Relationships Among Functional Health

RELATIONSHIPS AMONG DEPRESSIVE SYMPTOMS, SPIRITUAL WELL-BEING,

AND QUALITY OF LIFE IN PRIMARY LIVER CANCER PATIENTS IN KOREA

EUNSUK LEE

Submitted in partial fulfillment of the requirements

For the degree of Doctor of Philosophy

Dissertation Adviser: Dr. Joyce J. Fitzpatrick, PhD, MBA, RN, FAAN

Frances Payne Bolton School of Nursing

CASE WESTERN RESERVE UNIVERSITY

May, 2012

CASE WESTERN RESERVE UNIVERSITY

SCHOOL OF GRADUATE STUDIES

We hereby approve the dissertation of

EUNSUK LEE . candidate for the Doctor of Philosophy degree *.

(signed) Dr. Joyce J. Fitzpatrick . (chair of the committee)

Dr. Mary T. QuinnGriffin .

Dr. Elizabeth A. Madigan .

Dr. Smitha S. Krishnamurthi .

Dr. Haeok Lee .

(date) March 21, 2012 .

*We also certify that written approval has been obtained for any proprietary material contained therein.

Dedication

This dissertation is dedicated to:

My late grandparents, Hansun Maria Lee and Bockyee Lee, who taught me

the importance of education and caring, the virtue of patience,

and the value of lifelong learning.

My parents, Younsik Lee and Chungui Jang, who taught me morals and values, for their love and commitment to my education in making this dream come true in reality.

My sister, Eunkyung Agnes Lee, who paved the way and cleared the path before me

so that I could move forward; for her prayers, devotion,

and setting a good example of courageous footprints for my life journey.

And

My advisor, Dr. Joyce J. Fitzpatrick, for mentoring, encouraging, and inspiring me

to pursue my doctoral study through her Life Perspective Rhythm Model.

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TABLE OF CONTENTS

Page Title Page ······························································································· i

Committee Approval Sheet ········································································· ii

Dedication Page ····················································································· iii

Table of Contents·····················································································iv

List of Tables ························································································ vii

List of Figures ······················································································ viii

List of Appendices ···················································································ix

Acknowledgements ·················································································· x

Abstract ······························································································ xiii

CHAPTER 1: INTRODUCTION ·································································· 1 Introduction ······················································································· 1 Background and Significance ··································································· 2 Statement of the Problem ········································································ 7 Purpose ···························································································· 11 Conceptual Framework ········································································· 12 Assumptions ······················································································ 18 Research Questions ············································································· 18 Nursing Implications ············································································ 19

CHAPTER 2: REVIEW OF LITERATURE ···················································· 23 Introduction ······················································································ 23 Depressive Symptoms ·········································································· 23 Spiritual Well-Being ············································································ 29 Quality of Life ··················································································· 36 Relationships among Examined Variables··················································· 43 Depressive Symptoms and Quality of Life in Cancer Patients ························ 43 Spiritual Well-Being and Quality of Life in Cancer Patients ························· 47 Depressive Symptoms and Spiritual Well-Being in Cancer Patients ················ 50

CHAPTER 3: METHOD ··········································································· 54 Research Design ················································································ 54 Sampling ························································································· 54 Sample Selection ············································································ 54 Setting ························································································ 54

Inclusion and Exclusion Criteria ·························································· 55 Sample Size Determination ································································ 56 Definitions of the Study Variables ··························································· 59 Depressive Symptoms ······································································ 59 Spiritual Well-Being ········································································ 60 Quality of Life ··············································································· 61 Instruments ······················································································ 61 Demographic Data Collection Sheet ····················································· 61 The Center for Epidemiologic Studies Depression Scale (CES-D Scale) ·········· 62 Spiritual Well-Being Scale (SWBS) ····················································· 64 The 12-item Medical Outcomes Study Short Form Health Survey (SF-12v2) ···· 68 Data Collection ·················································································· 75 Methods ······················································································· 75 Procedure ····················································································· 75 Data Analysis ···················································································· 77 Quantitative Data Analysis ································································· 77 Qualitative Data Analysis ·································································· 79 Protection of Human Subjects ································································ 80

CHAPTER 4: RESULT ············································································ 81 Screening of the Data ·········································································· 81 Preliminary Data Examination ································································ 81 Regression Diagnostics ···································································· 81 Demographic Characteristics ································································· 86 Description of the Sample ································································· 86 Personal Profile ············································································· 87 Socioeconomic Profile ····································································· 88 Medical Profile ·············································································· 89 Summary of the Instrument Results by Demographic Characteristics ·············· 91 Predictor Variables ·············································································· 92 Depressive Symptoms ······································································ 92 Spiritual Well-being ········································································· 93 Dependent Variable ············································································· 94 Reliability of the SF-12v2 ·································································· 95 QOL-PCS ····················································································· 95 QOL-MCS ···················································································· 95 Research Question #1 ··········································································· 96 Relationship between Depressive Symptoms and Spiritual Well-Being ············ 96 Relationship between Depressive Symptoms and Quality of Life ··················· 97 Relationship between Spiritual Well-Being and Quality of Life ····················· 97 Research Question #2 ··········································································· 98 Research Question #2a ······································································ 98 Research Question #2b ···································································· 100 Research Question #3 ········································································· 102 Negative Themes ·········································································· 103 Positive Themes ············································································ 104

Summary ························································································ 104

CHAPTER 5: DISCUSSION ···································································· 107 Sample Characteristics ······································································· 109 Testing the Study Model ····································································· 112 Depressive Symptoms ········································································ 115 Spiritual Well-Being ·········································································· 118 Quality of Life ················································································· 120 Clinical Implications ·········································································· 123 Recommendations for Future Research ···················································· 125 Limitations ····················································································· 128 Summary ························································································ 130

Appendices ························································································· 133

Bibliography ······················································································· 291

LIST OF TABLES

Page

Table 1: Means, Standard Deviations, Skewness, and Kurtosis of the Study Variables ·· 84

Table 2: Personal Profile of the Patients ························································ 88

Table 3: Socioeconomic Profile of the Patients ················································· 89

Table 4: Factors Contributing to Cancer ·························································· 90

Table 5: Current Status and Treatment of HCC ················································ 90

Table 6: Duration of Illness since HCC Diagnosis ············································ 91

Table 7: Mean, Standard Deviation, Median, Actual Range, Possible Rage, and Cutoff

Point of Predictor Variables ···························································· 93

Table 8: Mean, Standard Deviations, Median, Actual Range, and Possible Range of Raw

Scores of Dependent Variable ························································· 96

Table 9: Research Question #1: Pearson’s Correlation Matrix Summary ·················· 98

Table 10: Research Question #2a: Regression Analyses Summary when Controlling

Duration of the HCC Illness ·························································· 100

Table 11: Research Question #2b: Regression Analyses Summary when Controlling

Duration of the HCC Illness ·························································· 101

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LIST OF FIGURES

Page

Figure 1: Theoretical model of the research study derived from Fitzpatrick’s Life

Perspective Rhythm Model (LPRM) ·················································· 13

Figure 2: Theoretical Substruction and Empirical Structure ·································· 16

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LIST OF APPENDICES

Page

Appendix A: Demographic Data Collection Form & Background Questionnaire ······ 133

Appendix B: The Center for Epidemiologic Studies Depression Scale (CES-D) ······· 140

Appendix C: The Spiritual Well-being Scale (SWBS) ······································ 143

Appendix D: The 12-iten Medical Outcomes Study Short Form Health Survey Version

2.0 (SF-12v2) ····································································· 146

Appendix E: IRB Approvals ····································································· 151

Appendix F: Informed Consent ································································· 155

Appendix G: Letter of Introduction ···························································· 190

Appendix H: Quotes from In-depth Interviews ··············································· 193

Appendix I: Non-repeating Rhythmicities through Interactions of the Patterns between

Human and Environmental Fields ············································ 287

Appendix J: Redrawing the Life Perspective Rhythm Model ······························ 289

Acknowledgements

I gratefully acknowledge the funding received from The Frances Payne Bolton

School of Nursing Alumni Research Grant at Case Western Reserve University, The

Susie Kim Fellowship Grant from the Global Korean Nursing Foundation, and The Case

Western Reserve University Research ShowCASE Award.

First of all, to those brave study patients who shared their lived experiences and provided priceless information for my dissertation, I extend my humble gratitude. I could not have finished this research without their willingness that made it possible to learn more about how to live meaningfully with liver cancer until the last moment.

I express my deepest gratitude to my advisor, Dr. Joyce J. Fitzpatrick, for her guidance and generous sharing of knowledge and experience as well as her insightful, expert advice during my entire dissertation process. Her passion for spirituality research and theory has been an inspiration to me, actually leading me down this dissertation path after I studied her Life Perspective Rhythm Model during my Master’s program.

Many thanks to my committee members, Dr. Mary T. Quinn Griffin, Dr. Elizabeth A.

Madigan, Dr. Smitha S. Krishnamurthi, and Dr. Haeok Lee who provided much time and support during the almost one year of waiting for the approval of the IRBs. Special thanks are also due to Dr. Barbara J. Daly, Dr. Sara L. Douglas, Dr. Mary K. Anthony, Dr.

Youngsook Park, Dr. Yeonghee Shin, and Dr. Seungkew Yoon, for their thoughtful comments and guidance which made it possible to navigate successfully between the

Case Cancer IRB and the IRBs in Korea.

I would like to thank Dr. Ronald L. Hickman who provided constructive feedback and facilitated creative thoughts. Dr. Hickman has become a role model for me as a

scientist, scholar, and a health care professional who has a sincere understanding of patients’ pain as well as family members’ burdens. As a doctoral student and a project manager, I had the privilege of interacting with him and his allowing me to learn research methodology has given me great research experience and broadened my perspectives in nursing research.

I am grateful to Dr. Haeok Lee, Dr. Seunghee Park Margevicius, Dr. Sunghee Nam,

Dr. Arax Balian, and Dr. Patricia Corrigan who have been wonderful resources of inspiration and encouragement throughout my years at Case Western Reserve University from the choice of research instruments to detailed advice for translating the entire transcript of the qualitative interviews. My special gratitude to Dr. Haeok Lee who has been a great mentor through her sharing of many updated research materials; she has gone above and beyond the call of a committee member’s duty both in the United States and in Korea. I would also like to thank Barb Boveington-Molter who has been a good friend and who kindly prepared my reception and congratulations sign.

I express my special gratitude to Dr. Mary Frances Murray, SND, who has been a truthful reviewer and who valued my potential capability as a researcher by giving me positive motivation to overcome any writer’s block. Without her selfless devotion, commitment, and prayers, I could not have run this long marathon to the finish line.

I would like to express my heartfelt appreciation to Sister Kathleen Mary Hine, SND and my best friend and prayer-mate, Sister Mary Kelley Rush, NND, who have been good listeners and counselors when I was going through the most difficult times in my life. They have supported me during my endless worries and dilemmas regarding the research process. Their belief in me has helped me to believe in myself. I would also like

to express my special thanks to Sister Mary Cecilia Liberatore, SND, who helped me find a place to stay during my data collection period in Korea. I am grateful as well for her prayers and kind encouragement during the very cold winter of my soul; she actually made me feel that I was not alone in the struggling moment. I also thank Sisters Margaret

Mary Gorman, Mary Ellen Beebe, Mary Patricia Griesmar, Mary Emilia Castelletti, Mary

Joela Leinberger, Ann Marie Teder, Eileen Marie Skutt, Mary Patricia Gannon, Mary

Roman Ress, and so many other Sisters of Notre Dame who have been ceaselessly praying for my doctoral dissertation journey.

I would like to thank my family members, especially my brother, Seungjae Lee and my sisters Eunkyung Agnes Lee, Eundeuk Christina Lee and Enjoo Lee, who have been looking after my parents in my place and who have strengthened me when the dissertation process was challenging and overwhelming. I also thank my very special niece, Yoonjeong Amelia Kim, who has been my mustard seed and who gave me the entire savings from her piggy bank when I left my homeland. May she always cherish her positive outlook and steadfast faith and hope in God. Much gratitude is extended to my uncle Hongsik Lee, my aunt Yeonsil Lim, and my late uncle Ilsang Jang, who have been a strong fortress for me, showing unwavering supports and understanding, practically and emotionally, from the beginning of my doctoral study until this moment.

Finally, I would like to give special thanks to my parents, Younsik Lee and Chungui

Jang for their prayers, unconditional love, and support; they willingly volunteered themselves as stepping stones for me so that I could cross the stream without freezing my feet to achieve my lifelong goals. “Mom and Dad, this is for you!”

xii

Relationships among Depressive Symptoms, Spiritual Well-Being, and Quality of Life

in Primary Liver Cancer Patients in Korea

Abstract

EUNSUK LEE

Primary liver cancer is the most common type of solid tumors affecting young to middle-aged individuals and the second leading cause of death in Korea. However, very little research has been conducted concerning the specific factors which contribute to quality of life in primary liver cancer patients. Considering Korea's sharply increasing incidence/mortality rates due to the disease, the issue of quality of life is expected to become more critical.

This study employs a theoretical framework based on Fitzpatrick’s Life Perspective

Rhythm Model. The research design employs mixed methodology both quantitative data

(a cross-sectional design) and qualitative data (a phenomenological approach). The purpose of this study is to explore the relationships among depressive symptoms, spiritual well-being, and quality of life as well as to examine the lived experiences of primary liver cancer patients in Korea. A total of 96 patients were consecutively recruited for quantitative data collection and 40 of these patients completed in-depth interviews.

To investigate participants’ demographic characteristics, a researcher-designed questionnaire was used. To measure the study variables, the CES-D Scale (Radloff, 1977) for depressive symptoms, the Spiritual Well-Being Scale (Paloutzian & Ellison, 1982) for spiritual well-being, and the SF-12v2 (Ware et al., 1996) for QOL were used. The instruments reported high reliabilities in this study: the CES-D (Cronbach’s α=.80), the

xiii

SWBS (Cronbach’s α=.89), and the SF-12v2 (Cronbach’s α=.89).

In summary, there were significant negative correlations: between depressive symptoms and spiritual well-being; between depressive symptoms and QOL-PCS; between depressive symptoms and QOL-MCS. There were significant positive correlations: between spiritual well-being and QOL-PCS; between spiritual well-being and QOL-MCS. In order to predict QOL-PCS in the regression equation, spiritual well- being was the strongest predictor when controlling duration of the HCC illness. In order to predict QOL-MCS in the regression equation, the strongest predictor was depressive symptoms when controlling duration of the HCC illness; spiritual well-being served as a moderator. Regarding the qualitative data analyses, in the negative theme category, 24 of the depressive symptom-related themes, 17 of the spiritual distress-related themes, and 6 of the other negative themes were identified. In the positive theme category, 20 themes were identified.

xiv

CHAPTER 1

Introduction

Cancer has been one of the major public health problems among all racial and ethnic groups causing fatal physical and psychological changes and frequently involved with emotional distress. Cancer has rapidly developed into a chronic health problem because of increased incidence/prevalence rates; these rates have made the disease a major health issue in Korea since 1983 (National Cancer Center of South Korea, 2008). The highest incidence rate of liver cancer is reported in the Eastern Asian countries including Korea and this increase will likely continue for some decades (Bosch, Ribes, Diaz, & Cleries,

2004).

In Korea in particular, primary liver cancer is the most common type of solid tumors affecting young to middle aged individuals and the second leading cause of death among cancer populations. The annual increases in incidence rate of liver cancer have been predominantly among men who report approximately 4 times higher rates of incidence than women. This rate translates to 38.4 per 100,000 men and 10.6 per 100,000 women being affected each year. Estimates from the year 2008 indicate that the annual mortality rate from liver cancer in Korea was 28.4 per 100,000 men and 7.3 per 100,000 women

(International Agency for Research on Cancer, 2010). Consequently, liver cancer patients often face challenges with complex interventions, complicated treatment regimens, and arduous decision-making experiences. Patients with life-limiting diseases may experience serious emotional challenges such as depressive symptoms and spiritual distress, all of which may lead to quality of life impairment. Therefore, a better understanding of the

relationship among depressive symptoms, spiritual well-being, and quality of life is urgently needed for liver cancer patients.

Thus, the purpose of this study is to explore the relationship among depressive symptoms, spiritual well-being, and quality of life in primary liver cancer patients in

Korea. This chapter addresses the background and significance, statement of the problem, purpose of the study, conceptual framework, assumptions, research questions, and the nursing implications.

Background and Significance

Cancer has been one of the world’s leading causes of death and it has continued to sharply increase morbidity and mortality that impact all dimensions of a person. It is estimated that one in two men and one in three women will be diagnosed with cancer during their lifetime (American Cancer Society, 2007). The U.S. Department of Health and Human Services reported that Asian Americans are the only major USA racial/ethnic group for which the annual number of deaths from cancer exceeds that for heart disease, although they have lower incidence and mortality rates from all cancers combined than all other racial/ethnic groups (National Center for Health Statistics, 2006). In addition,

Asian Americans have higher rates of cancers related to infectious conditions, particularly tumors of the liver, cervix, stomach, and nasopharynx, compared to a lower risk for cancers of the lung, colon and rectum, breast, and prostate (Jemal, et al., 2007). In

2008, an estimate of 749,000 newly occurred cases of liver cancer was reported worldwide and 695,000 cases died of liver cancer (International Agency for Research on

Cancer, 2010). One of the regions of high incidence rates is Eastern Asia including Korea

(International Agency for Research on Cancer, 2010).

According to cancer statistics in Korea, 12.2 % of the country’s overall mortality rate may be attributed to cancer (National Cancer Center of South Korea, 2008) evoking many burdens and reactions not only for the patient but also for the family as well. In

2008, 24.4 per 100,000 died of cancer and 70% of patients died within one year after being diagnosed (National Cancer Center of South Korea, 2008). In Korea, cancer was one of the top 10 leading causes of death in 2008 and the disease became distinctive and an important cause of suffering and death since 1983 (National Cancer Center of South

Korea, 2008). In particular, due to the high fatality (overall ratio of mortality to incidence of 0.93), liver cancer is the sixth most common newly diagnosed cancer and the third most common cause of cancer mortality in the world (International Agency for Research on Cancer, 2010). In addition, liver cancer remains the fifth most common cancer in men

(523,000 cases, 7.9% of the total) and the seventh in women (226,000 cases, 6.5% of the total) worldwide since 2000 (International Agency for Research on Cancer, 2010).

In 2008, Korea has been reporting a relatively high incidence rate of liver cancer and age-adjusted incidence rates for liver cancer in men were relatively high in Korea (38.4 per 100,000) compared with Japan (17.6 per 100,000) (International Agency for Research on Cancer, 2010). In addition, the number of deaths is almost the same as the incidence rate from liver cancer because of very poor prognosis (Parkin, Bray, Ferlay, & Pisani,

2005). This geographic variability in incidence of primary liver cancer is generally explained by the distribution of the Hepatitis B and C viruses that has been reported as the attributable risk for over 80% of liver cancer cases worldwide (Bosch, et al., 2004).

As noted above, these statistics signify not only the astoundingly high incidence rate of

liver cancer but also that approximately more than 1/20th of these cases were found in the

Korean population (National Cancer Center of South Korea, 2008).

Consequently, suffering with liver cancer itself may cause a persistent pain, aggravated symptoms, increased emotional exhaustion, and continuous spiritual distress.

A cancer diagnosis is a traumatic experience that leads to emotional distress such as depressive symptoms (Epping-Jordan, et al., 1999; Gregurek, Bras, Dordević, Ratković,

& Brajković, 2010). Accordingly, spiritual well-being has been found to be positively associated with a higher level of health status, both physically and psychologically, which represents major dimensions of quality of life (Koenig, George, & Titus, 2004). Spiritual well-being has been reported to be associated with a lower level of depressive symptoms

(Nelson, Rosenfeld, Breitbart, & Galietta, 2002). Therefore, as health professionals in the cancer care arena, it is pivotal to understand the whole person – physical well-being, psychological well-being, social well-being, and spiritual well-being.

Qualitative studies for the patients with various types of life-threatening events reported the need to restructure their life goals and priorities, the need to identify an existential view of their own mortality, and the need to deepen their spirituality as a result of the cancer experience (Carter, 1989; Duffy & Aquino-Russell, 2007; Sprung, Janotha,

& Steckel, 2011). As a result of this influencing experience, the early investigators used a qualitative approach for cancer and reported a type of epiphany or a major quantum change which was directly affected by cancer (Carter, 1993; Jarvis, 1996; Oktay &

Walter, 1991). Only patients with poor prognosis due to cancer know what it is like to live with such a terminal illness that is a unique experience for each individual. There is a considerable need for investigation into the relationship among depressive symptoms,

spiritual well-being, and quality of life in primary liver cancer patients (Gall, et al., 2005).

However, there have been no qualitative studies conducted to examine the lived experience of primary liver cancer patients in Korea. This study may provide information as to how liver cancer patients integrate their lived experience into their lives and find meaning through an in-depth interview. Thus, the explored phenomenon through this study may be partially explained.

A variety of factors has been examined in relation to depressive symptoms or quality of life in cancer populations but comparatively little attention has been paid to the contribution of depressive symptoms or spiritual well-being to the overall quality of liver cancer patients’ lives. There is not a single universally accepted definition of the quality of life of cancer patients. Most researchers agree that the concept is a multidimensional construct that includes domains of physical functioning and comfort, role functioning, general health status, psychological well-being, emotional functioning, social functioning, and mental health (Osoba, 2004; Schwarz, Bernhard, Flechtner, Hürny, & Küchler, 1994;

Stewart, Teno, Patrick, & Lynn, 1999). However, most quality of life instruments do not incorporate the positive aspects of the cancer experience which may lead to individual growth and development through resolution of dissonant reality (Cohen & Mount, 1992;

Pearce, Sanson-Fisher, & Campbell, 2007). Quality of life in cancer patients emphasizes the experience of living with a satisfactory functioning in the face of life-threatening illness even when a person is undergoing a near death experience (American Society of

Clinical Oncology, 1998; Chaturvedi, 2003; Ramchandani, 2001; Zebrack, 2000). Thus, identifying quality of life of liver cancer patients beyond the physical domain, including

healing and growth regardless of physical deterioration, is a more suitable definition for this study.

A recent qualitative phenomenological study highlighted the importance of a search for meaning and lived experience for the chronically ill population including cancer patients (Buki, et al., 2008; Demir, Donmez, Ozsaker, & Diramali, 2008; Donovan &

Flynn, 2007; Duffy & Aquino-Russell, 2007; Hughes & Arber, 2008; Kaiser, 2008;

Larsson, Hedelin, & Athlin, 2007; McKechnie, MacLeod, & Keeling, 2007; Tobin &

Begley, 2008). Spiritual beliefs may serve as a buffer for physical deterioration and emotional distress associated with chronic illnesses (Mytko & Knight, 1999). Examining spiritual well-being in liver cancer patients may provide useful information leading to interventions that improve health outcomes.

Liver cancer patients are initially treated with pharmacological and lifestyle regimens but advanced cancer can reach a point where medical treatment is no longer effective.

Organ transplants may be the only available treatment option for some individuals with irreversible organ damage; however, transplants are limited by the number of potential donors and compatibility (Shah, Levy, Adcock, Gallagher, & Grant, 2006). Thus, from this context, most of the cancer patients may be aware of the fact that they have to prepare themselves for the dying process and facing death itself at the very moment of being diagnosed with liver cancer.

Spirituality has been described as a beacon of light providing hope for life- threatening disease (Walton & St. Clair, 2000). Similarly, there is literature indicating that spirituality improves health and well-being (Krupski, et al., 2006). Incorporating the spiritual component into cancer care may have a profound effect on the patient’s ability

to thrive despite the progressive nature of cancer. There is literature that supports the connection among depressive symptoms, spiritual well-being, and meaning of life

(Carver & Antoni, 2004; Cordova, Cunningham, Carlson, & Andrykowski, 2001). Yet, as noted above, there is little information with regard to depressive symptoms, spiritual well-being, and quality of life among liver cancer patients in Korea despite the fact that this irreversible condition results in suffering and disability which could be mitigated by spiritual expression or emotional representation. In addition, little research has been done to empirically verify the effects of the liver cancer experience for the Korean population or establish the meaning of this experience. Thus, it is crucially required to examine the relationship among depressive symptoms, spiritual well-being, and quality of life in primary liver cancer patients in Korea.

Statement of the Problem

Primary liver cancer is a disease in which malignant cancer cells form in the tissues of the liver and affect the gastrointestinal system with progressive cachexia, hemorrhage, liver failure, or metastatic spread; it is mostly prevalent in males, particularly in those over 40 years of age, and the incidence rate increases with age (Lewis, Dirksen,

Heitkemper, Bucher, & Camera, 2010). In Korea, liver disease is one of the most prevalent types of chronically critically ill diseases and, therefore, is a major health problem and the leading cause of disability in working age adults (Park, et al., 2006). In

2010, approximately 10~50% of cancers in Asia have been reported as primary liver cancer (International Agency for Research on Cancer, 2010). Furthermore, increasing mortality and morbidity of cancer, including primary liver cancer, poses significant burdens of health care expenditures each year (Chang, et al., 2007).

Ninety percent of primary liver tumors originate in the parenchymal cells which cause hepatocellular carcinomas and a person with liver cirrhosis is about 40 times more likely to develop hepatocellular carcinomas than a person with a normal liver (Smeltzer,

Bare, Hinkle, & Cheever, 2008). There is no particular staging system for liver cancer, and the prognosis is almost always poor. The progress of the disease is rapidly fatal when the cancer is present and usually occurs within 2 months of diagnosis. The immediate cause of primary liver cancer is unknown; however, possible risk factors for primary liver cancer are as follows: exposure to the hepatitis B or C virus; family history of hepatitis or liver cancer; present history of liver cirrhosis; environmental exposure to hepatotoxic agents or carcinogens; or eating foods contaminated with aflatoxin (Lewis, et al., 2010).

Pathophysiological evidence of a primary liver cancer presents itself in unexpected weight loss, nausea, anorexia, weakness, unusual fatigue, fever, severe epigastric pain or right upper quadrant pain, jaundice, dependent edema, increased span of liver dullness, ascites, and a palpable mass or nodule in the right upper quadrant (Lewis, et al., 2010).

The accelerated decline of liver functioning due to liver cancer is considered irreversible and incurable, although using hepatitis B virus vaccines and screening of blood and blood products for hepatitis B and C viruses have contributed to prevention of the disease

(Bosch, et al., 2004; Springhouse Corporation, 2005). The pathophysiology of primary liver cancer is poorly understood and the prognosis is not always predictable. To confirm the accuracy of the physical examination of liver cancer, liver biopsy by a fine-needle aspiration or open biopsy, liver function studies, electrolyte studies (increased sodium retention, hypoglycemia, hypercalcemia, or hypocholesterolemia), serum tumor marker

tests (elevated alpha-fetoprotein above 500 mcg/ml), CT scan, MRI, ultrasonogram, and arteriography, can also be utilized.

Liver cancer patients live with recurrent and worsening symptoms that seriously impair daily functioning. In addition, acute symptom exacerbation, including pain, is the most commonly experienced life-threatening crisis in this population even though death is an inevitable human experience (Springhouse Corporation, 2005). Liver transplantation may be applied for some patients; however, the risk of cancer recurring is very high

(Lewis, et al., 2010).

Considering the rapidly exacerbated disease progress, the disease burden of primary liver cancer should be addressed by examining the multiple impairments that occur. Due to the progressively worsening symptoms, primary liver cancer patients experience dramatic changes and complex phenomena that are characterized by physical, behavioral, emotional, and social alterations that ultimately affect an individual’s quality of life.

Consequently, cancer symptoms directly affect patients’ functioning and daily activities sharply decline from initial loss of energy and functional capabilities which eventually lead to functional disability (Cohen & Mount, 1992). The progressive impairment from the disease has contributed to increased health care expenditures.

The psychological impact of the disease, such as depressive symptoms, is consistently interrelated with their impaired quality of life and the consequence of therapies (Reich, Lesur, & Perdrizet-Chevallier, 2008). During the cancer treatments, many patients experience depressive symptoms, emotional disturbance, fear, anxiety, or altered spirituality (negatively or positively) (McCoubrie & Davies, 2006). Results of previous studies report that depressive symptoms are one of the most prevalent factors in

cancer patients (Germino, Fife, & Funk, 1995; Van Wilgen, Dijkstra, Stewart, Ranchor,

& Roodenburg, 2006). All of these negative or positive responses influence overall quality of life which ultimately affects holistic human functioning (Delaney & Barrere,

2008; Seaward, 2010). Additionally, cancer patients commonly experience altered spirituality due to their declining and restricted physical, social, and emotional functioning. Spiritual well-being in cancer patients has been found to be associated with a lower level of depressive symptoms thus indicating a negative relationship between two variables (Nelson, et al., 2002). Although the processes of death and dying are natural in human development (as is the aging process), they have been masked in mystery. In this view, confronting death is usually envisioned as a dreadful phenomenon accompanied by excruciating pain and suffering or fear. Most studies in the literature often neglected to portray the meaningfulness of life at the end of life, despite the fact that this is a crucial key determinant to enhance human health in a crisis experience. In this context, conceptualizing and introducing the domains of quality of life, depressive symptoms, and spiritual well-being for patients confronting the death and dying process not only present controversial issues but also clinical complexities. Thus, both influencing variables

(depressive symptoms and spiritual well-being) were included in this study.

In summary, in spite of the fact that complex impairments due to primary liver cancer tremendously burden individuals, cancer is often described as leading to a heightened awareness of meaningfulness of life and rendering maximum development of human potentiality. The patient’s depressive symptoms and spiritual well-being may affect the quality of life. Thus, these concepts require empirical exploration to develop a conceptual framework with theoretical insight and to illuminate the importance of

spiritual well-being as well as quality of life for patients who are confronting the death and dying process. Due to the lack of empirical knowledge about the importance of depressive symptoms and spiritual well-being as well as knowledge about quality of life, progress in developing theoretical insight about these concepts requires empirical examination. Therefore, this study investigated two variables (depressive symptoms and spiritual well-being) that may significantly affect quality of life in the primary liver cancer patients. Reluctance to report depressive symptoms varies by cultural contexts in adults with cancer in Korea. Thus, in this study, general depressive symptoms of the primary liver cancer population, rather than clinically depressed symptoms, were examined.

Specific components of each domain have not been clarified in the primary liver cancer population. In addition, it is not known how these highly complex concepts correlate with each other. Thus, there is no research study conducted to address this complex phenomenon and its components. Spiritual well-being may be an explanatory factor to predict quality of life for patients with primary liver cancer because of its relationship to quality of life in other terminally ill populations. Therefore, this study investigated the relationships among depressive symptoms, spiritual well-being, and quality of life using Fitzpatrick’s Life Perspective Rhythm Model (LPRM).

Purpose

The primary purpose of this study is to explore the relationships among depressive symptoms, spiritual well-being, and quality of life for primary liver cancer patients in

Korea. The second purpose is to investigate the influence of the two predictor variables

(depressive symptoms, spiritual well-being) that predict quality of life. The final purpose

of the study is to examine the lived experiences of liver cancer patients by using a phenomenological approach for capturing a more complete, holistic, and contextual description through the in-depth interview. The relationship among the three study variables was examined based on the theoretical framework that is Fitzpatrick’s Life

Perspective Rhythm Model.

Mixed-method design was utilized combining quantitative and qualitative methods as follows: (1) A non-experimental, cross-sectional, descriptive correlational research design with one time point; (2) Phenomenological approach to in-depth interviewing guided by open-ended background questions to capture a more complete, holistic, and contextual description of the experiences of liver cancer patients’ perspectives. This study, then, will contribute to a much-needed foundation of theory-based studies by exploring the relationships among psychological manifestations, spiritual distress, and other cancer- related afflictions.

The ultimate goal is to improve and enhance quality of life at the end of life for liver cancer patients living in Korea, providing a new paradigm that may effectively assist patients in terms of cancer treatment and holistic care approaches through their spirituality and positive emotional coping.

Conceptual Framework

The conceptual framework underlying this study is the Life Perspective Rhythm

Model (Fitzpatrick, 1983). Four elements (temporal patterns, motion patterns, consciousness patterns, and perceptual patterns) in the Life Perspective Rhythm Model

(1983) are depicted in the schematic of Figure 1.

Martha Rogers’ Science of Unitary Human Beings (Rogers, 1980) serves as a developmental theory framework and principles for Fitzpatrick’s Life Perspective

Rhythm Model. The Life Perspective Rhythm Model is a dynamic, developmental, process-oriented framework in which human development is conceptualized as being characterized by non-repeatable rhythms (Fitzpatrick, 1983). In the Life Perspective

Rhythm Model, Fitzpatrick synthesizes Rogers’ concepts of rhythmicity (helicy, resonancy, and complementarity) and Caplan’s Crisis Theory (Tomey & Alligood, 1998).

The Life Perspective Rhythm Model has been utilized to guide various studies investigating human rhythmic patterns for populations in crisis, such as suicidal, elderly, terminally ill, cancer, and hospitalized individuals (Tomey & Alligood, 1998).

Figure 1. Life Perspective Rhythm Model (Fitzpatrick, 1983). Adapted from “Conceptual models of nursing: Analysis and application” by J. J. Fitzpatrick & A. L. Whall (Eds.), 1983, pp. 295-302.

The theoretical substruction and empirical construct for this study is conceptualized in the schematic of Figure 2. The major elements of the Life Perspective Rhythm Model are person, environment, health, nursing, rhythmic patterns, and meaningfulness of life

(Tomey & Alligood, 1998). The Life Perspective Rhythm Model rests on five major assumptions based on the conceptual underpinnings of Rogers’ premises: (1) human beings are integral and unified wholes, more than and different from the sum of their parts; (2) human beings and environments are open systems, continuously exchanging energy with each other; (3) the life process evolves irreversibly along the space-time continuum; (4) pattern and organization identify human beings and reflect their innovative wholeness; (5) human beings are characterized by the capability of abstraction and imagery, language and thought, sensation and emotion.

According to the Life Perspective Rhythm Model, the mutual continuous rhythmic interaction of patterns between the human field and the environmental field affect and may even change holistic human functioning; these altered holistic human functioning are intricately related to patterns of health. Patterns of health may be determined by manifestations of holistic functioning which ultimately affect quality of life (Tomey &

Alligood, 1998). The patterns of health are considered as the indices of human rhythmic patterns showing peaks and troughs throughout the life span (Fitzpatrick & Whall, 2005).

The changes in human rhythmic patterns manifest themselves as nonrepeating rhythmicities which are made by person-environment interaction and are best characterized through a crisis, such as experiencing illness, institutionalization or confronting death (Tomey & Alligood, 1998). Specifically, primary liver cancer may be considered one of the most representative examples of a life crisis experience confronting

death since the number of deaths is almost the same as the incidence rate from the disease due to the very poor prognosis (Parkin, et al., 2005). Consequently, the nonrepeating rhythmic patterns through life’s crisis experiences, such as primary liver cancer, may critically influence patterns of health.

Fitzpatrick’s definition of health focuses not only on the absence of disease but also on quality of life and maximum wellness. Fitzpatrick conceptualized health as a continuously evolving characteristic of the human dimension with full life potential.

More importantly, patterns of health can be more fully developed by heightened awareness of the meaningfulness of life. The meaningfulness of life is the most crucial key determinant of health which may be enhanced after a crisis experience. Individuals in the process of dying or confronting life-threatening crises may experience a maximum dimension of human health which is characterized by the intensified awareness of the meaning attached to life. As Fitzpatrick emphasizes, the meaning attached to life is the most pivotal core essential to maintaining human life and to enhancing quality of health.

Thus, in individuals suffering from terminally ill disease or even in the process of dying, health can be enhanced since heightened awareness of the meaningfulness of life can transcend death.

Quality of life is considered as an empirical indicator of patterns of health since quality of life incorporates the multidimensional concepts which include physical functioning, physical role functioning, bodily pain, general health status, vitality

(energy/fatigue), social functioning, emotional functioning, and mental health (Ware,

Kosinski, Turner-Bowker, & Gandek, 2002). In this study, quality of life is viewed as a manifestation of patterns of health and also as a crucial manifestation of person-

environment interaction to enhance meaningfulness of life for individuals. Depressive symptoms and spiritual well-being are hypothesized to be influencing predictors of quality of life.

In summary, all elements in the Life Perspective Rhythm Model (person, health, environment, and nursing) are conceptualized as open, holistic rhythmic systems best characterized by temporal, motion, consciousness, and perceptual patterns that may be enhanced by heightened awareness of the meaningfulness of life through life crises; meaning attached to life is viewed as an essential aspect to enhance and maintain human life (Fitzpatrick, 1983). This study was designed to explore patients’ complicated phenomena through life’s crises and to examine the multidimensional aspects of quality of life and relationship with the influencing predictors.

Theoretical Mutual, continuous, and rhythmic construct of interactions of the patterns the Life between human and change Holistic human functioning Perspective environmental fields Rhythm Model

Concepts Nonrepeating of human rhythmic patterns affect Patterns of health the research through life’s crisis experiences

Empirical Depressive Spiritual indicators symptoms well-being influence Quality of life

Measurement Spiritual CES-D Scale correlate Well-Being SF-12 tools or predict Scale

Figure 2. Theoretical substruction and empirical structure.

Despite various descriptions in previous investigations that focus on cancer populations, there is no compelling conceptual framework within which to elucidate the phenomenon of the relationships among depressive symptoms, spiritual well-being, and quality of life in primary liver cancer patients. Most of the theoretical frameworks or theories in the literature have elucidated the physiologic concept of health-death continuum from which health was conceptualized as the absence of disease. In other words, the death and dying process was viewed as the extreme deterioration of human functioning. Thus, the disease-specific models or linear construct of health-death concepts (with strict boundaries and cut-point to death) may not be able to expand the horizon regarding the meaningfulness attached to life particularly for those who are confronting the dying process through life-threatening crises.

Even though the Life Perspective Rhythm Model has not been utilized to study the

Korean population with primary liver cancer, it has been previously used in other studies of chronic illness or terminally ill cancer populations. In addition, most of the empirical research studies utilizing the Life Perspective Rhythm Model did not restrict application to specific populations. More importantly, Fitzpatrick’s model was constructed on the basis of concepts and principles as follows: the expression in the rhythmicities can be found in the dying process since health transcends death; death is not the end, but only a change in cosmic address (just as aging is postulated as a developmental process, dying is also hypothesized to be developmental); and the continuity of field patterning subsequent to dying, since the words “healthy” and “dying” are not mutually exclusive (Malinski,

1986). Therefore, this conceptual model is applicable for this research study. Furthermore, as a new trial for unexamined populations, this conceptual model for liver cancer patients

in Korea may facilitate continuous scholarly activities of a community of scholars and the development of nursing within a scope of inquiry which may lead to the advancement and enhancement of nursing science at a broader level.

Assumptions

The theoretical assumptions for this study include the following:

1. Patterns of health may be determined by manifestations of holistic functioning.

2. Nonrepeating human rhythmic patterns through life’s crisis experiences affect holistic

human functioning.

3. Quality of life is a manifestation of holistic human functioning.

4. Depressive symptoms, spiritual well-being, and QOL have correlations.

5. Depressive symptoms and spiritual well-being influence QOL.

Research Questions

In this study, individuals 20 years and older who were diagnosed with a primary liver cancer were asked to rate their depressive symptoms, spiritual well-being, and quality of life. Relationships among the study variables (depressive symptoms, spiritual well-being, and quality of life) were also analyzed. The following research questions were posed.

Q1. Is there a relationship between depressive symptoms, spiritual well-being, and

quality of life for patients with primary liver cancer in Korea?

Q2. To what extent do depressive symptoms and spiritual well-being predict the quality

of life for patients with primary liver cancer in Korea?

Q2a. To what extent do depressive symptoms and spiritual well-being predict the

quality of life from a physical health perspective for patients with primary liver

cancer in Korea?

Q2b. To what extent do depressive symptoms and spiritual well-being predict the

quality of life from a mental health perspective for patients with primary liver

cancer in Korea?

Q3. What is a patient’s lived experience of living with primary liver cancer in Korea?

Nursing Implications

The history of nursing highlights the compassionate care for dying patients using holistic approaches and postulates that human caring exists beyond the possibility of cure

(O'Brien, 2010). Given the high vulnerability of the liver cancer patients, findings from this study may guide others to a wide range of possibilities for future research.

Identifying and understanding the various relationships among the study variables will assist nurses and other healthcare professionals to provide adequate and cost-effective health care and to enhance the overall quality of life at the end of life in clinical practice.

The knowledge gained through this investigation will be directly useful for practicing nurses and clinicians to increase self-confidence by understanding the unique phenomenon of cancer experiences at the end of life. The results of this study may provide useful resources for health professionals targeting an increase in positive affect, spiritual connections and meanings, and health outcomes as well.

Measuring both the multidimensional and specific aspects of enduring the suffering associated with liver cancer, such as the phenomena of depressive symptoms, spiritual well-being, and quality of life, would be a challenge. By mitigating depressive symptoms and probing the influencing factors, nurses can promote spiritual well-being and quality of life, since depressive symptoms usually is a strong indication of a lack of positive affect (Sugawara, et al., 2012). All of this is in keeping with the Life Perspective Rhythm

Model and takes into account consideration for the person’s constantly changing patterns.

The measurement tools for this study are the Center for Epidemiologic Studies

Depression Scale (CES-D Scale) (Radloff, 1977) to measure depressive symptoms, the

Spiritual Well-Being Scale (SWBS) (Paloutzian & Ellison, 1982) to measure spiritual well-being, and the 12-item Medical Outcomes Study Short Form Health Survey Version

2.0 (SF-12v2) (Ware, Kosinski, & Keller, 1995) to measure quality of life. These three instruments were chosen because they measure the key concepts of the study variables; all have been globally verified with the English version and specifically validated with the Korean translated version. Models may be re-tested with more comprehensive, different measurement tools that better examine the constructs of emotional coping and spiritual connection. In addition to enhancing professional knowledge in the specific population under study, management of the quality of life for chronically critically ill patients who have end of life issues may be promoted through interdisciplinary collaborative research.

Some studies in the literature have suggested that spiritual meaninglessness results in an existential vacuum or crisis related to failure to discern connectedness to God (O'Brien,

2010; Wiklund, 2008). All of this may lead to negative affect such as the depressive symptoms that is often typical of cancer patients. Accordingly, researchers have noted that spiritually-focused therapies relieve depressive symptoms and, therefore, conclude that a spiritual connection with God may act as a buffer against painful experiences (Cole,

2005; O'Brien, 2010). These findings may be especially applicable to the liver cancer population who endure life-threatening prognoses and extremely painful experiences.

Regrettably, traditional regimens or protocols have been problem-focused, emphasizing

repairing the negative symptoms of psychological illness (depressive symptoms), instead of strengthening the positive emotions (spiritual well-being) (Seligman, Rashid, & Parks,

2006) which may provide a crucial buffer against terminally ill patients. Similar to Chang et al.’s suggestions (Chang, et al., 2007) for investigating the burden of liver cancer in

Asians, the study findings may significantly contribute to the development of culturally competent, practical protocols, management guidelines and/or nursing interventions for primary liver cancer patients in health care settings. The interventions by the health care professionals make a difference in the journey from being diagnosed with cancer until the final moments of life (Barnum, 2006).

In this context, the results of this research study may also be applied to the development of appropriate spiritual or positive emotional support interventions using holistic approaches through exploration of the effects on liver cancer patients.

Furthermore, this study may provide empirical confirmation of the study elements to develop adequate and proper tools in order to foster better communication among the patient, family, significant others, and healthcare professionals. Consequently, patients’ outcomes, especially in terminally ill cancer patients, including primary liver cancer patients, may be improved by focusing on factors that decrease quality of life. These efforts ultimately may achieve and maintain better quality of life for cancer patients.

Considering the close proximity of the nurse to the patient and family through day- to-day interactions, nurses stand in a crucial position to affect the quality of life for patients. Appropriate nursing assessment and discharge planning can be focused on identifying the influencing factors on quality of life for these cancer patients. Regardless of the composition of the cancer care team providing tremendously useful resources, it is

the nurse, as the pivotal component and primary coordinator, who is the common denominator, among the team, the patient and the family members (Ferrell & Coyle,

2006).

In terms of the clinical arena, the nurse, as health care provider for individuals, families, communities, and populations, has a moral obligation to identify patients’ emotional and spiritual needs as well as their physical and psychosocial needs. This is especially important since intrinsic power or energy, including spirituality, is a pivotal part of each person’s healing process and may eventually lead to enhanced quality of life representing health status. However, there is a lack of scientific inquiry investigating nursing’s new role and its importance in cancer care settings from the patient’s perspective.

Finally, potential cost savings in governmental expenses for cancer care, specifically in liver cancer, will serve as the basis for further research to influence health care policy changes throughout Korea, thereby leading to improved quality of life at the end of life.

The need definitely exists to further research in the multidimensional aspects of health, including aspects of psychological distress such as depressive symptoms, spiritual well- being, and quality of life to provide empirical evidence for future expanded roles for nurses in the rapidly changing health care system in Korea.

CHAPTER 2

Review of Literature

Introduction

The integrated review of literature for this study focused on three key variables: depressive symptoms, spiritual well-being, and quality of life. Liver cancer patients who are confronting a grim prognosis and dying process have a desperate desire to express their physical, psychological, social and spiritual needs as well as their lived experiences during the entire cancer journey. Considerable research on depressive symptoms, spiritual well-being, and quality of life among general cancer patients has been conducted but very little empirical research has been executed specifically targeting liver cancer patients. For this systematic review, the Cumulative Index of Nursing and Allied Health Literature

(CINAHL), the Pub Med-Medline, and the PsycINFO databases were searched using key words and limit options (English language only and publication date since 1985).

In this chapter, literature focused on defining the three key concepts was presented.

In addition, attention was also paid to the linkages between examined variables in cancer patients and to analyzing both theoretical and clinical studies in the literature.

Depressive Symptoms

A systematic search was performed using the Cumulative Index of Nursing and

Allied Health Literature (CINAHL), the Pub Med-Medline, and the PsycINFO databases.

Searching on the literature in English from 1985 to the present, in order to identify the extent to which depressive symptoms has been investigated in cancer patients, the key words entered were depression, depressive symptoms, or depressive feelings in cancer

patients. The CINAHL database yielded a total of 2,241 research articles, the Pub Med-

Medline yielded 9,260, and the PsycINFO yielded 2,754.

Researchers who studied the depressive symptoms in cancer patients or family members have paid more attention to palliative care settings or acute care settings in order to relieve psychological distress (Delgado-Guay, Parsons, Li, Palmer, & Bruera,

2009; Hallford, et al., 2011; McMillan & Weitzner, 2000; Mitchell, et al., 2011;

O'Connor, White, Kristjanson, Cousins, & Wilkes, 2010; Rayner, et al., 2011) than specifically to primary liver cancer patients. Most studies regarding depressive symptoms as the most common concern in cancer patients have focused on breast cancer patients, cancer survivors, or caregivers (Fann, et al., 2008; Liu, et al., 2011; Lueboonthavatchai,

2007). Less attention has been paid to studying the effect of depressive symptoms on the lifelong journey of primary liver cancer patients.

Theories to explain depressive symptoms utilized biochemical mechanisms, cognitive theory, learned helplessness theory, or sociocultural theories (Calarco & Krone,

1991). The biochemical disorder links its theory to a dysfunction in the cortisol secretion of the endocrine system which causes these symptoms of depression (Hauenstein, 1991).

Increased stress stimulates hypercortisol secretion in depressed patients; this is dysfunctional because it causes the depressive symptoms to remain (Calarco & Krone,

1991).

Beck proposed a theory that the cognitive content thought processes of depressed persons are distorted (Beck, Rush, Shaw, & Emery, 1987). Early in life, certain persons are predisposed to depressive symptoms which develop through negative thought processes regarding self-worth (Calarco & Krone, 1991). This negative schema is like a

virus that remains dormant until it is activated by a stressful situation at which time these maladaptive thought processes occur, causing a distortion in perception of the situation leading to feelings of depression (Calarco & Krone, 1991). This theory discounts the idea of the environment having any influence on a person’s depressive symptoms. Gender differences are not specifically addressed in this theory except that errors in cognition are more likely to be seen in women.

Another theory similar to Beck’s Cognitive Theory of Depression is learned helplessness theory which is a conditioned response to uncontrolled events based on a person’s perception of guilty feelings and feelings of hopelessness which leads to a depressed affect or lower self-esteem (Garber & Seligman, 1980).

According to the study of coping processes, hardy women often reported more adaptive behavior by mediating the life stresses protecting one from severe depressive symptoms, whereas less hardy women may have maladaptive behavior with more depressive symptoms (Rhodewalt & Zone, 1989). Their increased education may have meant that these women had greater resources to deal with their problems.

The study of spousal bereavement and mortality from cardiovascular disease, depressive symptoms as a mediator, increased the risk of mortality and thus exacerbated the overall health status in an elderly surviving spouse (Williams, 2005). Likewise, the study of depressive symptoms in husbands of breast cancer spouses found escape- avoidance coping detected as a full mediator between social support and depressive symptoms (Bigatti, Wagner, Lydon-Lam, Steiner, & Miller, 2011). In addition, the study of the development of a functional capacity for the elderly reported depressive symptoms as a mediator between sensory deficits and their functional health (Song & Lee, 1996).

The interventional study of prostate cancer patients (N=250) tested three individual variables (self-esteem, self-efficacy, and depressive symptoms) as potential moderators to predict physical functioning, mental functioning, and prostate-specific functioning

(Helgeson, Stephen, & Eton, 2006). The results showed that depressive symptoms moderated only to predict physical functioning. However, in the same prostate cancer population, depressive symptoms did not moderate to predict mental functioning or prostate-specific functioning.

Most studies of depressive symptoms in cancer research have been conducted with general cancer patients, non-primary liver cancer patients, or caregivers. A few studies were found highlighting depressive symptoms in primary liver cancer patients (Steel, et al., 2011). Interestingly, a study conducted in order to screen the depressive symptoms of terminally ill cancer patients (N=209) enrolled in a palliative care unit in Japan (Akechi, et al., 2006) reported that 22.5% (n=47) of the patients were experiencing depressive symptoms. This study concluded that 33 patients (15.8%) were diagnosed as having adjustment disorders (depressed mood in 11.5%; mixed emotional features in 4.3%), and

14 patients (6.7%) with major depression. The sample in Akechi’s study (2006) consisted of several types of cancer such as liver (7%, n=15), lung (38%, n=80), colon (12%, n=24), and head and neck (7%, n=15) indicating that the most frequent primary cancer sites were lung. However, Akechi’s study included only 15 patients with liver cancer. In addition, the methodological limitation of Akechi’s study was that there was no evidence of controlling for cultural differences between Asian participants and a Western style measurement tool (the Hospital Anxiety and Depression Scale). Asian patients are more likely to complain of somatic symptoms than depressive symptoms. Furthermore, there

was no evidence that the researchers encouraged open communication or full expression of patients’ emotions. Usually, in Asian cultures, internal or interpersonal harmony is highly valued rather than open and assertive expression. Without further explanation of the underlying cultural differences, these findings may have limitations.

Estimating the prevalence of depressive symptoms in cancer populations is difficult because many studies have used different diagnostic methods and the numerous variables affect levels of depressive symptoms and confound prevalence rates. Considering the fact that there was some inconsistent empirical evidence, assessing depressive symptoms in cancer patients needs to be reinvestigated not only to explore the above variables but also to identify possible influential factors made by pre-existing psychological disorders.

Many study findings indicated that a history of alcohol abuse or previous suicide attempts can increase the risk and level of depressive symptoms in a given population of cancer patients. Studies of elderly patients stated that depressive symptoms can be even more problematic since many elderly patient symptoms were atypical and can frequently include complaints of remembering details, somatic symptoms, and psychomotor agitation (Grassi, Malacarne, Maestri, & Ramelli, 1997). Furthermore, the study examining anxiety and depression of advanced cancer patients (N=1,439) who attended the Rapid Response Radiotherapy Program (RRRP) reported that 55% (n=792) patients suffered from depressive symptoms during their RRRP clinic visit (Salvo, et al., 2012).

Similarly, the study comparing depression and anxiety in adult cancer outpatients

(n=150) to non-cancer patients (n=268) reported that 66% of the cancer patients (n=99) were found depressed (Jadoon, Munir, Shahzad, & Choudhry, 2010). However, another study of hematologic cancer patients (N=199) after stem-cell transplantation reported that

only 17.5% (n=35) of these patients were classified as depressed (Prieto, et al., 2005).

Although studies in the literature demonstrated wide differences, the incidence rate of depressive symptoms in cancer patients gave clear evidence that must not be underestimated, considering that, on average, one in four cancer patients experience depressive symptoms (Delgado-Guay, et al., 2009).

Studies of many different populations demonstrated that the incidence of depressive symptoms were often associated with: the type of cancer (Doumit, Huijer, Kelley, El

Saghir, & Nassar, 2010), stage of the disease (Vodermaier, Linden, MacKenzie, Greig, &

Marshall, 2011), age (Harrison & Maguire, 1995; Jadoon, et al., 2010; Williamson &

Schulz, 1995), time since diagnosis (Fox, 1995), poorly controlled pain (Laird, Boyd,

Colvin, & Fallon, 2009), socio-economic difficulties (Rozniatowski, et al., 2005), or length of hospital stay or hospitalization itself (Guo, Young, Hainley, Palmer, & Bruera,

2007). In addition, the screening methods or interpretation of degree of depressive symptoms varied in the theoretical definition used by the investigators; for example, many studies defined words using slightly different terminology such as depressive symptoms, depressive syndrome, depression, or mood disorders (McDaniel, Musselman,

Porter, Reed, & Nemeroff, 1995).

As the majority of studies in the literature noted, it is clear that depressive symptoms affect many cancer patients’ overall health status (Jadoon, et al., 2010). Thus, health care professionals face an arduous task in identifying the symptoms. In order to more comprehensively examine depressive symptoms, quantitative measurement scales through a structured interview have been utilized as well as interviews using open-ended questions (Montazeri, et al., 2001; Sprung, et al., 2011). In many phenomenological

studies with Asian populations, due to culturally conservative hesitation, participants described culture-bound syndromes as having similar meaning to depressive symptoms; often the results presented a close connection between culture-bound syndromes and depressive symptoms. Nevertheless, most participants clearly manifested depressive symptoms (Juckett & Rudolph-Watson, 2010; Pang, 1999). Consequently, while qualitative interviews may be time-consuming and require more expertise in conducting them, they provide more comprehensive and holistic perspectives by capturing additional complicated phenomena (Doumit, et al., 2010; Streubert & Carpenter, 2010).

In summary, given limited resources, it would be impossible to undertake qualitative interviews with all cancer patients. However, in order to examine depressive symptoms in cancer patients, administering validated scales is equally as important as conducting in- depth interviews because using scales with limited validity may also provide questionable outcomes (Burns & Grove, 2005). Thus, the fact that the scales have been used before with cancer patients must be investigated. Fortunately, at present, there are a number of relatively validated psychometric measurements that have been used extensively with cancer patients, including the CES-D Scale. While these are not infallible, the validated scales offer an effective, inexpensive tool that can be used as a first step in the investigation of depressive symptoms before the qualitative interview is conducted.

Spiritual Well-Being

A systematic search was performed using the Cumulative Index of Nursing and

Allied Health Literature (CINAHL), the Pub Med-Medline, and the PsycINFO databases.

Searching only the literature in English from 1985 to the present, in order to identify the extent to which spiritual well-being was actually investigated in cancer patients, the key

words entered were spiritual well-being or spirituality in cancer patients. The CINAHL database yielded a total of 574 research articles, the Pub Med-Medline yielded 692, and the PsycINFO yielded 353.

The majority of studies of advanced cancer patients have paid significant attention to biological markers encompassing a wide variety of molecular changes, cancer tissues,

DNA, mRNA, transcription factors, cell surface receptors, or drug trials to predict the prognosis (Jiang & Chen, 2012; Ludwig, 2012; Sawyers, 2008; Zapatero, Martín, Cruz,

& Leaman, 2012). However, the needs of terminally ill cancer patients are no longer limited to biomedical outcomes. As noted in the literature regarding current cancer studies, rather than merely prolonging the life-span or increasing survival rate, improving or maintaining the persons' overall health status, including the spiritual dimension, has been a major concern in the final months or days of patients’ lives (Lin & Bauer-Wu,

2003). In spite of the fact that psychosocial and spiritual aspects are recognized as crucial dimensions, the notion of spiritual well-being in the research has been focused on hospice care or long-term care settings (Lin & Bauer-Wu, 2003). This complex and multifaceted structure of spiritual well-being as well as the concept of spiritual well-being has not been utilized in liver cancer studies because attributes of spirituality were often described as subjective feelings which were not always measurable. Considering that liver cancer has a very poor prognosis and less than a 10% five-year survival rate reported in advanced stage, most patients were facing impending death or the dying process (Habermehl,

Haase, Rieken, Debus, & Combs, 2011; Matthaei, et al., 2009).

One of the major challenges in the study of spirituality is that the concept of spiritual well-being has often been defined as synonymous with religious well-being (Dyson,

Cobb, & Forman, 1997; Kaut, 2000; Yeung & Chan, 2007). Some studies of terminal cancer at the end of life have reported that a dying person’s religious beliefs may be closely related to spiritual well-being or reflect the nature of spirituality (Kaut, 2000;

Koenig, et al., 2004; Levin, Larson, & Puchalski, 1997; Walsh, 2010).

In the literature, studies of general cancer populations postulated that spiritual interventions have been utilized in order to mitigate psychological distress and to increase satisfaction with care and well-being and to improve the efficacy of decision making

(Holt, et al., 2009; Kristeller, Rhodes, Cripe, & Sheets, 2005; Puchalski, et al., 2009).

The findings of Kristeller et al.’s study (2005) of cancer patients (N=118) reported that spiritual intervention enhanced patients’ ability to cope with cancer in an acceptable manner which ultimately led to a positive impact on quality of life. However, the majority of patients was Caucasian (91.5%, n=108) with Christian affiliation (81.3%, n=96) and had mixed diagnoses. In this context, the number of liver cancer patients was unclear. In order to assess the effect of spiritual intervention at three-time points, FACT-

G QOL, FACIT-Sp, and semi-structured interviews were used. Similarly, the study of newly diagnosed breast cancer patients (N=155) reported that religious or spiritual coping resources were significant in predicting the adjustment process during the early stages of breast cancer (Thuné-Boyle, Stygall, Keshtgar, Davidson, & Newman, 2012). This longitudinal study to examine the beneficial and harmful effects of religious or spiritual coping resources on adjustment measured religiosity/spirituality, strength of faith, belief in God, spiritual practices, and coping. Many studies linking spirituality and health status also presented a positive association between religious obligation and health status. The study findings stated that religious commitment was influential in improving negative

health outcomes including depressive symptoms, substance abuse, physical illness, and death (Anandarajah & Hight, 2001; Matthews, et al., 1998). Nevertheless, as noted in these studies, the inquiry failed to clarify the differences between spiritual distress and religious concerns.

Considering the growing need for the spirituality paradigm in cancer research, the definition of spiritual well-being must be explored as a broader and more comprehensive concept than religious well-being alone. Numerous studies looking at epidemiological and clinical relationships between religiosity and health status found significant positive correlations. A sense of meaning and purpose of life are present in persons who describe themselves as religious and this sense of purpose results in better outcomes (Koenig, et al., 2004). However, spiritual well-being is not synonymous with religiosity (Bredle,

Salsman, Debb, Arnold, & Cella, 2011; Dyson, et al., 1997). Most theories or findings of qualitative analysis which attempt to classify the concept of spiritual well-being have postulated key attributes such as a positive sense and purpose, fulfillment in life, hope or will to live, self-awareness, effective coping with stress, sense of confidence, a positive meaning attached to life, and a sense of connectedness with others or God (Dyson, et al.,

1997; Oldnall, 1996; Paloutzian & Ellison, 1982; Ross, 1995). More importantly, persons’ interactional relationships or sense of connectedness with others also considerably impact spiritual well-being (Hodge & Horvath, 2011; Lin & Bauer-Wu,

2003). Regardless of the existence of religious affiliation, the concept of spirituality or spiritual well-being is applicable to individuals who claim themselves as religious, non- religious, or anti-religious (Eichelman, 2007).

The need for spiritual integrity is basic to human beings in order to confront serious illness, including liver cancer, which may present the individual with a first experience of loss of control. This loss of control may inspire a first effort at finding meaning or purpose in life. Thus, a failure to identify spiritual needs is an influential factor leading to a patient’s incomplete or prolonged recovery (Ross, 1995). Thus, as is well recognized by many experts, including the spiritual well-being domain in the cancer arena has been emphasized as a pivotal research framework in order to investigate dying persons’ overwhelming concerns from patient-oriented perspectives (Adegbola, 2006).

Due to the complex nature of spirituality, spiritual distress is not always detectable by using cross-sectional descriptive research methods. Sometimes, spiritual needs are inadequately measured based on what the researcher intended to measure (Garrett, 2011).

Through qualitative interviews, patients’ spiritual needs, greatest concerns, and fears are identified more comprehensively. The majority of qualitative studies of spiritual needs in the literature classified major themes in health care settings: meaning, purpose and hope, relationship with God, spiritual practices, religious obligations, interpersonal connections, and professional staff interactions (Cavendish, et al., 2006; Conco, 1995; Conner & Eller,

2004; Emblen & Halstead, 1993; Fagerstrom, Eriksson, & Engberg, 1999; Hampton,

Hollis, Lloyd, Taylor, & McMillan, 2007; Meert, Thurston, & Briller, 2005; Moller,

1999; Shih, Wang, Hsiao, Tseng, & Chu, 2008; Simsen, 1986). As the classified themes addressed in qualitative studies, the theme of spirituality or spiritual well-being has not only been connected to religiosity or God but also interrelated with interpersonal connection and interaction with others or environment. Furthermore, findings of many phenomenological studies have supported the fact that cancer patients believe that the

death and dying process is a natural part of the life cycle (Adegbola, 2006). Thus, as many studies have noted, having positive relationships and connectedness with others

(family, friends, other patients, or the care team) were ultimately responsible for enhancing spiritual well-being in terminally ill cancer patients (Greisinger, Lorimor,

Aday, Winn, & Baile, 1997; Morasso, et al., 1999; Schulz, et al., 2008). Similarly, other studies presented that connectedness with others was associated with cancer patients’ heightened sense of hope (Ballard, Green, McCaa, & Logsdon, 1997; Benzein, Norberg,

& Saveman, 2001), with the meaning of life (Edser & May, 2007; Thomas & Retsas,

1999), and with overall quality of life (McMillan & Weitzner, 2000).

Most patients experiencing life-threatening circumstances have reported that feelings of fear, suffering, and hopelessness were mitigated by spiritual experiences and replaced by a clearer understanding of meaning and strength (Hall, 1998). Furthermore, spiritual intervention such as prayer, prayerful states and healing words reported positive results of health outcomes (Kaplar, Wachholtz, & O'Brien, 2004). A study examining the effects of spirituality (meaning of life and prayer) on a sense of well-being with breast cancer survivors (N=84) reported that meaning attached to life was positively related to psychological responses and negatively related to physical responses; prayer was positively related to psychological well-being (Meraviglia, 2006). According to

Meraviglia’s study (2006), spiritual well-being was conceptualized as the positive aspects of spirituality containing attributes of the meaning of life and prayer. Interestingly, the study findings postulated that meaning of life (a key element of spiritual well-being) partly mediated the effects of breast cancer on well-being in breast cancer survivors.

According to existential theory (Frankl, 1992), spirituality and emotional well-being are moderated by the degree of perceived life threat. However, contrary to theoretical predictions, a study examining the effects of spirituality on psychological adjustment to cancer with cancer patients (N=95) reported that spiritual well-being was correlated with low distress and high quality of life regardless of perceived life threat (Laubmeier,

Zakowski, & Bair, 2004). Interestingly, existential well-being but not religious well- being accounted for a major portion of the variance in these outcomes. Thus, spiritual well-being, particularly the existential component, is identified as a buffer that moderated the impact on reducing distress in cancer patients (Laubmeier, et al., 2004).

Study findings of the impact of death with terminal cancer patients (N=67) reported that self-awareness of their own death and dying process enhanced patients’ spiritual well-being (Payne, Hillier, Langley-Evans, & Roberts, 1996). The results analyzed by quantitative and qualitative analyses reported that patients witnessing another person’s death were significantly less depressed than those who did not have this experience. As a consequence, awareness of the dying process was more associated with being comforted than being spiritually distressed which eventually led to overall spiritual well-being.

During qualitative interviews, as a positive theme regarding death and dying, many patients expressed that a good death was categorized by symptom control, including dying in their sleep, no pain, quietness and dignity (Payne, et al., 1996). Likewise, a study of palliative care patients (N=11) using a phenomenological hermeneutic approach postulated that patients’ awareness of living in the terminal stage of cancer enhanced thoughts about spiritual well-being including meaning of life and the hope of life after

death (Benzein, et al., 2001). Again, there is no single research design that interprets the complex domain of spiritual well-being as well as mixed emotions.

There are a few studies available that have explored the effect of spiritual well-being on health outcomes for the liver cancer patients. The gaps and lack of knowledge about spiritual well-being in this population have been paid less attention than other cancer research areas. In many Asian cultures, in order to define spiritual well-being, the concepts of Karma, Chi, self-transcendence, or reincarnation have been commonly incorporated (Ting, 2011). Thus, in order to accumulate a body of knowledge regarding spiritual well-being in liver cancer studies, similarities and differences among cognitive concepts regarding both the definition and the cultural context must be examined. Based on the empirical evidence, the definition of spiritual well-being must be derived from inductive reasoning and using qualitative research methods that will ultimately lead to the development of instruments to measure spiritual well-being as well as spiritual nursing interventions.

Quality of Life

A systematic search was performed using the Cumulative Index of Nursing and

Allied Health Literature (CINAHL), the Pub Med-Medline, and the PsycINFO databases.

Searching only the literature in English from 1985 to the present, in order to identify the extent to which quality of life was actually investigated in cancer patients, the key words entered were quality of life and health-related quality of life in cancer patients. The

CINAHL database yielded a total of 5,755 research articles, the Pub Med-Medline yielded 23,183, and the PsycINFO yielded 1,868.

Many instruments are used in the literature to measure quality of life and they report different results across various populations. A few studies have been conducted to measure quality of life in primary liver cancer patients. In spite of the high mortality rate of liver cancer, there is not as yet a specifically conceptualized definition of quality of life in order to address the multifaceted phenomenon of living with primary liver cancer.

Quality of life is a multidimensional construct with complex domains. Thus, generally the definition of quality of life entails particular attributes such as physical functioning, physical role functioning, bodily pain, general health status, vitality, social functioning, emotional role functioning, and mental health status (McDowell, 2006; Rush,

First, & Blacker, 2007). The theoretical definition conceptualized in the previous chapter encompasses these attributes.

Assessing quality of life has been recognized as an indicator of health outcomes for cancer patients. Most patients reported no obvious pre-existing symptoms. Due to the silent and rapid progression of the disease as well as poor prognosis, many patients discover their illness to be at a terminal metastatic stage at the time of the diagnosis

(Bosch, et al., 2004). Thus, given the short timeframe to live, investigating quality of life as a key health outcome is extremely important. The majority of studies examining health status have chosen to use quality of life instruments in order to evaluate the long-term effects of surgical intervention (Chen, et al., 2004), chemotherapy (Taguchi, 1994), radiation (Shun, et al., 2008), psychosocial interventions (Rehse & Pukrop, 2003), or other non-surgical procedures (Wang, et al., 2005). However, these instruments’ applicability to the primary liver cancer population has not been established.

A study examining the effect of hepatectomy with liver cancer patients (N=36) reported that their postoperative quality of life was temporarily reduced 2~10 weeks after surgery; however, the quality of life 4 months after the operation was significantly increased (Chen, et al., 2004). The findings of this two-year follow-up study concluded that their overall quality of life was significantly increased over time compared with the preoperational baseline data.

Similarly, a study examining the link between coping styles and quality of life with

Chinese gastrointestinal cancer patients (N=180) reported that the active personality group and the situationally flexible personality group were associated with higher perceived controllability and psychological well-being than those in the passive personality group (Cheng, et al., 2012). Cheng et al.’s study (2012) sample was comprised of 115 Chinese adults who were men (68.9%, n=124) and colon cancer patients (63.9%, n=115). However, primary liver cancer patients in the sample were less than one half (36.1%, n=65). In order to assess quality of life, the SF-12 was used. The quality of life scores were measured and summarized into two main categories: physical well-being and psychological well-being. In this longitudinal study with two time-points, compared with the passive personality group, the active group and the flexible group reported higher psychological well-being at both time-points and higher physical well- being at time point 2 (12 months after the baseline data collection) than the control group with a 180 healthy community sample. These study findings may be supported by the theory of cognitive adaptation indicating that the impact of devastating stress can be ameliorated by positive beliefs or thoughts (Taylor, Kemeny, Reed, Bower, &

Gruenewald, 2000). In other words, positive beliefs such as optimism, personal control,

and a sense of meaning are known to be protective of mental health as well as physical health. The ability to find meaning during a life-threatening crisis is also correlated with a less rapid progression of the illness (Taylor, et al., 2000). Thus, psychological well-being as one of the components of quality of life, such as positive belief, meaning, and control, not only preserve mental health in the context of life-threatening events but also protect physical health.

A study examining the quality of life and psychosocial well-being of brain tumor patients (N=75) reported that quality of life was significantly correlated with anxiety, emotional well-being, and depressive symptoms (Janda, et al., 2007). The instruments used were the Functional Assessment of Cancer Therapy-General (FACT-G) to measure quality of life and the Hospital Anxiety and Depression Scale (HADS) to measure psychological well-being. The researchers interpreted that older age and being female were significant predictors of lower quality of life. Based on this clinically significant correlation between the FACT-G subscales and the HADS, the study results concluded that quality of life can be improved by alleviating emotional distress and by improving functional well-being. Therefore, low emotional well-being was most closely associated with high anxiety, while low physical well-being and functional well-being were correlated with high depressive symptoms. The study findings reported significantly lower levels of quality of life among brain tumor patients as compared with the general population. However, among 4 subscales of the FACT-G (physical well-being, social well-being, emotional well-being, functional well-being), the results as reported indicated that only 3 subscales (physical well-being, emotional well-being, functional well-being) were correlated with the HADS. Furthermore, as consistently noted in the literature, the

FACT-G used to measure quality of life in this study also gave heavier weight to the physical component of the quality of life domain. As a consequence, the major findings of this study failed to explain one of the key components of quality of life in cancer patients, namely, the spiritual domain.

A study investigating quality of life, symptom experience, physical health, psychological health, and perceived control of the effects of cancer with terminal cancer patients (N=58) reported that better physical health, greater control over the effects of cancer, and lower depression scores were significant predictors of higher quality of life

(Peters & Sellick, 2006). The most commonly prevalent symptoms were weakness, fatigue, sleeping during the day, and pain. Patients receiving home-based services (n=26) reported significantly less serious physical symptoms and distress, lower depression scores, better physical health, and higher quality of life than those receiving inpatient care

(n=32). Home-care patients also reported significantly better control over the effects of the cancer, cancer treatments, and the cancer progression than hospitalized patients. In order to assess quality of life, only 4 components (pain, family, social and financial quality of life, and global quality of life) were selected from the EORTC QLQ-C30

(Aaronson, et al., 1993) to avoid potential overlap with the Memorial Symptom

Assessment Scale (Portenoy, et al., 1994), the Palliative Performance Scale (Anderson,

Downing, Hill, Casorso, & Lerch, 1996), and the Hospital Anxiety and Depression Scale

(Zigmond & Snaith, 1983). However, the EORTC QLQ-C30 was designed to assess the generic aspects of quality of life; thus, it has limitations. In order to assess more completely the components of quality of life, a modular approach was adopted for additional disease-specific treatment measurements: lung, breast, head and neck, ovarian,

esophageal, gastric, multiple myeloma, cervix, esophagogastric, prostate, colorectal liver metastases, colorectal, brain, and endometrial modules. However, the instruments and disease-specific additional modules were also primarily focused on physical and psychological components. Regarding disease-specific treatment measurements, no primary liver cancer module has been developed.

Most quality of life instruments were found to have several limitations when applied to the context of liver cancer patients. One of the major assumptions in these theoretical models is that patients’ health is hypothesized to return to normal functioning. However, within Fitzpatrick’s model, that is an inappropriate assumption in primary liver cancer patients who are experiencing two extreme ends: fighting against cancer and impending death. According to the Life Perspective Rhythm Model (1983), quality of life as an indicative pattern of health is conceptualized as the non-repeatable rhythmicities across time and space. In addition, the majority of the quality of life instruments have given less weight to the emotional and spiritual health domains than to the physical health domains.

Furthermore, most quality of life instruments have failed to make accommodation for positive aspects of life-threatening events, particularly in the dying process. As noted earlier, liver cancer patients have a very poor prognosis in that the mortality rate is almost the same as the incidence rate. For this reason, in many health care settings, emotional and spiritual domains have often been the least of researchers’ concerns (Lane, 2005).

Significantly, overall quality of life can be enhanced by highlighting the emotional and spiritual domains at the end of life since that is the opportune time to reinforce growth and development (King & Hinds, 2011).

Considering over 60 theoretical models, a substantial number of conceptual models have been published regarding health-related quality of life since the 1960s (Taillefer,

Dupuis, Roberge, & LeMay, 2003). However, in many of these models, the principles or definition used to describe quality of life are not always clearly translatable or applicable to Asian cultures where the highest incidence and prevalence rates of primary liver cancer have been reported.

Most quality of life instruments, as many researchers stated, have limitations regarding the dimensions or factors that may influence quality of life but that are not always viewed as part of it especially in the particular culture in non-Western countries.

The external validity or content validity of quality of life instruments must be investigated a priori because most quality of life models entail psychometric components which are directly related to the cultural and linguistic context.

As noted in the literature, quality of life scores have provided vital information regarding the impact of disease and its treatment. In addition, quality of life outcomes have also been recognized as important prognostic variables which help to predict which patients are most likely to benefit from treatment (Bottomley, 2002; Rehse & Pukrop,

2003). Thus, in order to evaluate the effect of liver cancer treatments on physical, emotional, social and spiritual well-being, quality of life as a meaningful recovery indicator has been measured in many studies as well as liver function and tumor recurrence; all of these ultimately affect the survival rate.

The U.S. Food and Drug Administration has already confirmed the benefits of quality of life as a basis for approval of new anticancer drugs (Bottomley, 2002).

Although there is a strong consensus in the literature, some researchers and clinicians

remain unreasonably skeptical about the scientific reliability and validity of the assessment tools that are available for cancer populations as well as the lack of standardized terminology regarding the quality of life domains (Fallowfield, 2002;

Taillefer, et al., 2003). In addition, most studies in the literature investigating quality of life in cancer patients have clearly prioritized quantifiable data. In order to explore this complex phenomenon of the components of quality of life in liver cancer study, the methodologies that are used must utilize and integrate qualitative interviews through which importance of cultural context, a sense of meaning and purpose, interpersonal relationships, regret, stigma, self-awareness, transcendence, and other significant themes are captured. Thus, in order to provide a better understanding of the quality of life domain, sufficient modification of the models that already exist in the field as well as development of new theories and psychometrically solid instruments must be forthcoming based on empirical evidence.

Relationships among Examined Variables

Depressive Symptoms and Quality of Life in Cancer Patients

A systematic search was performed to examine the relationship between depressive symptoms and quality of life in cancer patients using the Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Pub Med-Medline, and the PsycINFO databases. In the literature in the English language from 1985 to the present, the CINAHL database yielded a total of 635 research articles, the Pub Med-Medline yielded 1,515, and the PsycINFO yielded 363.

In the cancer study literature, the use of the terms depressive symptoms, depression, and symptoms of depression were fairly interchangeable. In many studies, almost half the

cancer patients reported that depressive symptoms were one of the most distressing symptoms they experienced, eventually having a significant impact on their quality of life.

A large number of studies have reported that depressive symptoms are closely associated with various components of quality of life including impairment in role functioning and social functioning (Matsushita, Matsushima, & Maruyama, 2005; Mystakidou, et al.,

2005). In addition, depressive symptoms are also a known risk factor for non-adherence to treatment in patients with cancer (DiMatteo, Lepper, & Croghan, 2000). Despite its high prevalence and its consequences for the patients’ well-being, very little research has been devoted to this symptom in primary liver cancer patients.

A longitudinal study exploring the changes and relationships between depressive symptoms and quality of life in advanced liver cancer patients receiving a stereotactic radiotherapy (N=99) (Shun, et al., 2008) reported that depressive symptoms (β=-1.44; p<.05), performance functional status (β=-4.36; p<.05), the level of albumin (β=.12; p<.05), and overall symptom severity (β=-.48; p<.05) were significantly associated with changes in quality of life. In this longitudinal study, quality of life and depressive symptoms were measured before the stereotactic radiotherapy as baseline data and 3 weeks and 6 weeks data were collected for purposes of comparison. Additional data were collected every week during the entire stereotactic radiotherapy. The short form of the

Profiles of Mood States-Depression (POMS-D) (Shacham, 1983) to measure depressive symptoms and the Functional Living Index-Cancer (FLIC) (Schipper, Clinch, McMurray,

& Levitt, 1984) to measure quality of life were used. The samples of Shun et al.’s study

(2008) were mostly middle-aged males (68.7%, n=68), less than college education

(76.8%, n=76), and not employed (80.8%, n=80). The study findings demonstrated that

depressive symptoms were the second greatest contributor in predicting quality of life.

Thus, the researchers concluded that decreasing depressive symptoms, maintaining good functional status, and minimizing severity of distress symptoms could improve quality of life during the stereotactic radiotherapy. However, the long-term effects of stereotactic radiotherapy were not discussed. Thus, a potential contamination of the sample by maturation or diffusion effects was not controlled.

A study assessing the relationships among psychological characteristics, quality of life, and coping style among digestive cancer patients in Japan (N=85) reported that the higher the score regarding emotion-oriented coping style, the greater the deterioration in

QOL subscales (Matsushita, et al., 2005). The EORTC QLQ C30 to measure quality of life, the Hospital Anxiety and Depression Scale, and Zung’s Self-Rating Depression

Scale to measure depression and anxiety, were used at 3 time points (before surgery, before discharge, 6 months after discharge). To investigate patients’ coping style, the

Coping Inventory for Stressful Situations was used. As shown in the demographic characteristics, most patients were middle-aged males (62.4%, n=53) and the majority were stomach cancer patients (43.5%, n=37). Depression scores before discharge were significantly higher than the scores before surgery; interestingly, no significant differences were reported between depression scores before discharge and the scores 6 months after discharge. No significant difference in anxiety scores was found among the

3 time points. The study results reported that lower depression scores in patients significantly predicted higher levels of global quality of life, emotional function, and cognitive function subscales. In other words, the study findings reported that a patient’s psychological state was related to some quality of life subscales and that some of those

quality of life subscales were related to coping style. Therefore, in order to predict overall quality of life, it was very important to identify a patient’s coping style: an emotion- oriented coping style was more significantly related to a maladjusted personality and to psychological distress such as depression, than to a task-oriented coping style. Thus, in the health care setting, patients with an emotion-oriented coping style must be paid more attention. However, the analysis was unclear regarding whether the coping style was a mediator between the psychological state and quality of life. In addition, in the study sample, the number of liver cancer patients was only two (2.4%). Thus, in order to generalize these findings for liver cancer patients, sufficient sample size must be required.

Another study examining functional status, depressive symptoms, and health-related quality of life with recently diagnosed cancer patients (N=170) reported that a higher functional status (p<.001) and a lower level of depressive symptoms (p<.001) were associated with higher quality of life (Pinquart, et al., 2006). The majority were middle- aged males (55.8%, n=95), non-curative cancer stage (59.9%, n=102), and non-

Hodgkin’s lymphoma (25.6%, n=44) or leukemia (18.2%, n=31). The study findings reported that functional status moderated quality of life, indicating that stronger functional impairments were related to lower quality of life in patients with low and average levels of depressive symptoms, but not in those with high levels of depressive symptoms. Thus, the study findings concluded that functional decline did not additionally impair quality of life when patients’ depressive symptoms were already serious. However, the number of liver cancer patients was only one in this study sample. Therefore, these research findings need to be retested to confirm external validity.

In summary, as noted in many studies, depressive symptoms have been a key element in predicting quality of life. The majority of cancer patients face physical and psychosocial problems. As a result, they also experience depressive symptoms, anxiety, social isolation, loneliness, helplessness and hopelessness. Thus, either as predictors, moderators, or mediators, psychological factors affect the patients’ overall quality of life.

Spiritual Well-Being and Quality of Life in Cancer Patients

A systematic search was performed to examine the relationship between spiritual well-being and quality of life in cancer patients using the Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Pub Med-Medline, and the PsycINFO databases. In the literature in the English language from 1985 to the present, the CINAHL database yielded a total of 162 research articles, the Pub Med-Medline yielded 289, and the PsycINFO yielded 69.

Most studies examining the relationship between spiritual well-being and quality of life have focused on the general cancer population. In many theories, the underlying hypothesis is that spiritual well-being has a generally positive correlation with quality of life (Sawatzky, Ratner, & Chiu, 2005). Thus, the conceptualization of spirituality as part of a quality of life framework contributed to the development of multidimensional quality of life instruments such as the Quality of Life-Cancer Survivors Instrument (Ferrell, Dow,

& Grant, 1995), the Mental, Physical, and Spiritual Well-Being Scale (Vella-Brodrick &

Allen, 1995), the McGill QOL Scale (Cohen, Mount, Strobel, & Bui, 1995), the FACT-G

(Weitzner, et al., 1995), the Spiritual Well-Being Scale (Paloutzian & Ellison, 1982), and many other instruments.

As noted in the literature, spiritual well-being is associated with several indicators of well-being such as self-esteem, assertiveness, and meaning and purpose of life (Koenig, et al., 2004). A higher spiritual well-being in cancer patients was correlated with lower levels of anxiety about death (Chibnall, Videen, Duckro, & Miller, 2002), lower depression (Bekelman, et al., 2009), and higher life satisfaction (Tate & Forchheimer,

2002). Thus, many study findings also reported that the existential domain of spiritual well-being was an important predictor of overall quality of life for persons with various stages of cancer (Astrow, Wexler, Texeira, He, & Sulmasy, 2007).

A study investigating the relationships among communicative acts, social well-being, spirituality, and quality of life at the end of life with newly-admitted cancer patients

(N=50) reported that spiritual well-being was the greatest predictor (β=.34) of overall quality of life (Prince-Paul, 2008). The JAREL Spiritual Well-Being Scale (Hungelmann,

Kenkel-Rossi, Klassen, & Stollenwerk, 1996) to measure spiritual well-being, and the single item Quality of Life at the End of Life Scale (Steinhauser, et al., 2004) to measure quality of life were used. The results demonstrated that there were statistically significant and positive correlations between spiritual well-being and the single item indicator of quality of life (r=.64; p<.01), indicating that the overall model significantly predicted quality of life at the end of life. The majority in Prince-Paul’s study (2008) were males

(56.0%, n=28), over 55 years of age (74.0%, n=37), Caucasian (84.0%, n=42), Christian affiliation (90.0%, n=45), and lung cancer patients (34.0%, n=17). Thus, the findings of the study lacked cultural diversity. In Prince-Paul’s study (2008), the duration of illness was not measured. For example, the researcher did not address how long patients had been diagnosed nor their treatment experiences. As more time passed, there could have

been more possibilities of an adjustment or maturation effect which also might affect the overall quality of life score. The methodological limitation of Prince-Paul’s study (2008) was the participants’ characteristics. Participants who were accepted by the researcher for this study had already been diagnosed with advanced cancers and had also been enrolled in a hospice program. This ultimately led to the possibility of a convenience sample selection bias. In addition, this study sample included only three liver cancer patients and no Asians. The average age of the patients was 60.38 (range=35~80), yet, only 4 patients were in the 35~45 year range. Without additional data about this age group, the results may not be generalizable since the different age groups may have been significantly different in developmental tasks and relationships.

A study exploring the relationships among spiritual well-being, quality of life, and psychological adjustment with breast cancer patients (N=142) reported that high spiritual well-being was associated with a better quality of life and use of specific adjustment styles (e.g., fighting spirit) (Cotton, Levine, Fitzpatrick, Dold, & Targ, 1999). The findings also reported that the use of the helpless/hopeless adjustment style was correlated with low quality of life. The majority were Caucasian (84%, n=109) while the number of Asians was small (9.0%, n=12). Furthermore, the results reported that spiritual well-being did not significantly predict overall quality of life although spiritual well- being was correlated with both quality of life and psychological adjustment. Thus, the relationships among these variables were more complex and, perhaps, indirectly impacted the outcome variable. Longitudinal studies need to be conducted to confirm the fact that the relationship between spiritual well-being and quality of life is consistent over time.

In summary, spiritual beliefs and practices may improve the quality of a person’s life by buffering the negative effects of the cancer experience on physical and emotional health. Thus, spirituality has often been included in theoretical models of the quality of life domain (Sawatzky, et al., 2005). However, the fact is unconfirmed that the spirituality component is a substructure of quality of life or a partially overlapping concept with quality of life. Further research is needed to clarify the relationship between these variables using populations with various types of cancer patients including liver cancer.

Depressive Symptoms and Spiritual Well-Being in Cancer Patients

A systematic search was performed to examine the relationship between depressive symptoms and spiritual well-being in cancer patients using the Cumulative Index of

Nursing and Allied Health Literature (CINAHL), the Pub Med-Medline, and the

PsycINFO databases. In the literature in the English language from 1985 to the present, the CINAHL database yielded a total of 63 research articles, the Pub Med-Medline yielded 93, and the PsycINFO yielded 53.

According to Fredrickson’s broaden-and-build theory (Fredrickson, 2004), positive emotions (joy, interest, contentment, love, etc.) expand an individual’s momentary thought-action repertoire. As evidenced in the literature, spiritual beliefs or spirituality often affect a cancer patient’s coping mechanism (Gall, et al., 2005). Spirituality entails an individual’s beliefs, ethical codes and spiritual practices that unite an individual to a moral community. Spirituality can be conceptualized as one’s interconnectedness to other people, a Higher Being, or a higher, transcendent reality that may not necessarily be a deity (Gall, et al., 2005). Thus, spirituality often involves a search for meaning and

purpose in one’s life through transcendence beyond the biopsychosocial awareness of everyday experiences.

The study findings in the literature have consistently reported that positive affect was correlated with lower distress among cancer patients (Carver & Antoni, 2004). In other words, intensity of spiritual pain is not only correlated with physical pain or severity of illness but also correlated with depressive symptoms (Mako, Galek, & Poppito, 2006).

Thus, many studies of breast cancer patients reported that coping through the use of emotional expression increased positive affect as time passed (Staton, Webster, Hiller,

Rostosky, & Leukefeld, 2003). This positive affect is also associated with meaning.

A study of metastatic solid tumor patients (N=240) which examined the impact of spiritual intervention, consisting of a Kriya Yoga program and melatonin, reported that a spiritual therapeutic approach may improve the survival time of untreatable metastatic solid tumor patients (Messina, et al., 2011). Similarly, a study of palliative care patients

(N=160), tested with a series of standardized instruments, reported that spiritual well- being was negatively correlated with a desire for hastened death, hopelessness, and suicidal ideation (McClain, Rosenfeld, & Breitbart, 2003). The findings reported that spiritual well-being was the strongest predictor of each outcome variable. In addition, depressive symptoms were highly correlated with the desire for hastened death in low spiritual well-being patients. Thus, based on the study findings, researchers postulated that spiritual well-being provided some protection against end-of-life despair for terminal cancer patients who were facing impending death.

A study of breast cancer survivors (N=763) also reported that perceptions of positive meaning were correlated with higher levels of positive affect (Bower, et al., 2005). In

other words, breast cancer survivors preferred positive emotion words over negative emotion words, indicating that positive affect increased spiritual meaning during the cancer journey. These coping skills included reliance on personal factors, engaging in spiritual coping behavior, finding spiritual connections through utilizing support resources, and meaning-making. Thus, spirituality and coping mediated emotional distress by explaining the situation through an attribution to the will of God (Gall, et al.,

2005). The meaning-making role of spirituality is conceptualized as cognitive reappraisal which is crucial to successful adjustment to a life-threatening situation. Thus, meaning- making as a key role of spirituality contributes to buffer the negative effects of stress through its influence on thinking, emotions, and behavior (Vachon, 2008). Consequently, through this meaning-making process, the individual deals more effectively with the stressful situation within the context of spirituality and this ultimately leads to a higher level of well-being (Gall, et al., 2005). In other words, the inability to make meaning aggravates psychological distress which may eventually lead to ineffective coping behaviors (Emmons & McCullough, 2004). In many studies of terminally ill patients, higher spiritual well-being is significantly correlated with less emotional distress (Mako, et al., 2006; Nelson, et al., 2002).

A study examining the contribution of spirituality and spiritual coping to anxiety and depression in gynecological cancer patients (N=100) reported that younger women with a more advanced cancer stage and more negative spiritual coping skills had a greater tendency towards anxiety (Boscaglia, Clarke, Jobling, & Quinn, 2005). This study finding reported that younger age, later stage of disease, and greater use of negative religious coping significantly predicted a higher level of depression. However, in this

study, spirituality did not significantly affect the depressive symptoms. Although low spirituality was not a statistically strong predictor in depressive symptoms (β=-.38, p=.053), a lower level of spirituality was associated with a higher level of depressive symptoms.

In summary, as noted in the literature, spirituality is a key factor that contributes to good mental health during the cancer journey by giving meaning and purpose to life through a sense of connectedness with the self, others, the significant environment, God, or a Higher Being (Krok, 2008). During life-threatening illnesses, spirituality has been found to be positively associated with psychosocial adjustment. Thus, spiritual well-being was negatively correlated with psychological symptoms including depressive symptoms by providing a unique contribution to the prediction of hopefulness and a sense of peace.

Through this process of expressing positive emotions, negative affect can be alleviated.

Therefore, depressive symptoms were inversely related to attachment, security, and spiritual well-being.

CHAPTER 3

Method

Research Design

A mixed-method design, combining quantitative and qualitative methods at all stages of the data collection and analysis, was used. For quantitative data collection, a descriptive, cross-sectional, correlational design was used to examine relationships among depressive symptoms, spiritual well-being, and quality of life. For qualitative data collection, a phenomenological method of in-depth interviewing guided by open-ended questions was used. The aim of the mixed-method design was to examine the existing relationships and interrelationships within a specific time period and situation as well as to explore a more complete, holistic, and contextual description of the experiences from the study of participants’ perspectives (Polit & Beck, 2004).

Sampling

Sample Selection

The target population consisted of Korean liver cancer patients, over 20 years of age, who were diagnosed with primary liver cancer. A convenient sample of primary liver cancer patients who agreed to participate in this study was consecutively recruited from both the Keimyung University Hospital Dongsan Medical Center (DMC) in Daegu and the Catholic University of Korea Catholic Medical Center Seoul St. Mary’s Hospital

(CMC) in Seoul until the target sample size was reached.

Setting

The data were collected via face-to-face interviews at inpatient or outpatient clinics using a conference room.

The Keimyung University Hospital Dongsan Medical Center (DMC) is a 1,000-bed university hospital in Daegu with a 4,000 average daily patient census. The DMC was established in 1899 as a charity hospital by American Presbyterian missionaries and was certified as the first general hospital in the Daegu area in 1905. Since that time, this medical center has been extended to include 26 clinical departments. The Catholic

University of Korea Catholic Medical Center Seoul St. Mary’s Hospital (CMC) is a

1,200-bed university hospital with a 5,000 average daily patient census in the Seoul area.

The CMC opened in l977 and was extended to include 40 clinical departments.

To support homogeneity of cancer care settings, the researcher selected the hospitals based on similar average quality of healthcare services provided throughout different units. The DMC and CMC are credentialed as two of the most outstanding teaching hospitals in Korea. The patients were identified from general medical, internal medical, or palliative care units in the hospitals. After obtaining informed consent, patients’ data were collected at the hospitals via face-to-face interviews and the patients’ medical profile data were collected through electronic medical records (EMR) to ensure the accuracy of the medical profile data.

Inclusion and Exclusion Criteria

The eligibility criteria, both inclusion and exclusion, were designated by the researcher in order to select participants that best reflected the meaningful and representative characteristics of the target population (Polit & Beck, 2004).

Inclusion criteria were as follows: (1) participants who were 20 years or older; (2) participants who had already been informed of the diagnosis of primary liver cancer by a physician prior to the onset of this study (with at least 4 weeks having passed since the

diagnosis); (3) participants who had the ability to communicate and to respond to questions in the Korean language; and (4) participants who provided informed consent to be interviewed face-to-face.

Exclusion criteria were as follows: (1) patients diagnosed as secondary liver cancer patients due to metastasis; (2) patients with unstable psychiatric illness, severe dementia, or a diagnosis of mental illness/cognitive impairment; (3) patients with severe cardiovascular complications, or unstable myocardial infarction (patients with unstable health status were excluded to avoid the potential risk for decreased quality of life not associated with cancer); or (4) patients who displayed a lack of ability to provide discernible verbal communication. There were no exclusion criteria based on gender, race, educational background, socioeconomic status or marital status because no evidence suggests that these variables influence the depressive symptoms, spiritual well-being, or quality of life in primary liver cancer patients.

Sample Size Determination

A power analysis was used to estimate the sample size needed for this study. The estimated sample size was calculated based on data from similar studies: Al-Dgheim’s

(2005) correlational study with two time points of advanced prostate cancer patients and

Prince-Paul’s (2008) correlational cancer research with end-of-life patients were used as the relevant literature. According to Al-Dgheim’s study focused on examining relationships among pain, coping strategies, and quality of life in advanced prostate cancer patients, the required sample size was 72 for multiple regression (number of predictor variables=8, alpha=.10, effect size of f2=.25, power=.90) while the actual sample size was 15 (number of predictor variables=8, alpha=.05, effect size of f2=.77,

power =.99) (Al-Dgheim, 2005). In Prince-Paul’s end-of-life research to examine relationships among communicative acts, social well-being, spirituality, and quality of life in cancer patients, the required sample size was 46 (number of predictor variables=3, alpha=.10, large effect size of f2=.35, power=.95), and the actual sample size was 50

(Prince-Paul, 2008).

The sample size was determined to decrease the likelihood of making Type I and

Type II errors. A power analysis was conducted using G*Power 3.1 (Faul, Erdfelder,

Lang, & Buchner, 2007). In order to calculate sample size, four parameters were used: (1) significance level (alpha), (2) beta level, (3) power (1-beta), and (4) effect size. In this study, the sample size was estimated based on multiple regression analysis to examine the relationships among the study variables and to answer the research questions.

Significance level (alpha, α). The level of significance (alpha) is the probability of making a Type I error by rejecting the null hypothesis when the null hypothesis is actually true (Aberson, 2010). A Type II error occurs when the null hypothesis is regarded as true even though it is false (Aberson, 2010). The relationship between a Type

I error and a Type II error is as follows: as the probability of a Type I error decreases (by setting a more extreme level of alpha), the risk of a Type II error increases (i.e., the risk of making a Type I error is greater with a .05 level of alpha than with a .01 level). On the other hand, as the risk of a Type II error decreases (by setting a less extreme level of alpha), the probability of a Type I error increases. In other words, it is not possible to decrease both types of errors simultaneously without a corresponding increase in sample size. Therefore, in this study, alpha was chosen at the level of .05 based on an analysis of the risks and benefits of a Type I or Type II error. In many nursing studies, the two-tailed

alpha of .05 is a conventionally accepted level to ensure effective sample size and statistically significant findings (Tabachnick & Fidell, 2007).

Effect size (gamma, γ). Effect size is defined as an index of the strength of the effects of the predictor variables on the dependent variable (Tabachnick & Fidell, 2007). The effect size is the degree to which the phenomenon is present in the population, measuring the strength of relationships between the means of two variables in the population and expected variation of the particular sample being studied (Aberson, 2010). As effect size increases, the power also increases. Small effect size requires larger samples. There are no prior data that determined the exact effect size for this particular population. However, studies of other types of cancer (McCoubrie & Davies, 2006; Reisine, et al., 2005;

Schroevers, Ranchor, & Sanderman, 2004; Vernon, et al., 1997), studies of patients with other ethnic backgrounds (Conerly, Baker, Dye, Douglas, & Zabora, 2002; Daaleman,

1999; Makambi, Williams, Taylor, Rosenberg, & Adams-Campbell, 2009), studies in other Asian countries (Hayashi, et al., 2011; Irie, Miyata, & Kasai, 2005; Lue, Chen, &

Wu, 2010; Nishiyama, Ozaki, & Iwata, 2009; Yang, Soong, Kuo, Chang, & Chen, 2004), and studies in non-Asian countries (Conerly, et al., 2002; Hann, Winter, & Jacobsen,

1999; Olson, Presniak, & MacGregor, 2010) have consistently reported the effect sizes between a medium and large effect size based on the validation of the CES-D Scale, the

SWBS, and the SF-12 scales. Generally, a medium effect size for multiple regression is an R2 of .15 (Aberson, 2010). Considering this fact, a medium effect size of .15 was chosen for this study based on the validation of the CES-D Scale, the SWBS, and the SF-

12 scales.

Power. No previous data exist reporting the level of power for this particular population in Korea. For power analysis, the estimated power approached a level of .95

(i.e., a value of .05 beta: β=1- power of .95) based on the studies in the literature.

Therefore, considering the chosen alpha level of .05, the power of .95 was determined.

Sample size. In summary, the sample size for this study was calculated by using the following parameters: a significance level (alpha) of .05, a medium effect size of .15, a power level of .95, a value of .05 beta (β=1- power of .95), and the number of predictors of two. These parameters for power analysis based on multiple regression were entered into the G*Power 3.1 software program (Faul, et al., 2007). Thus, given these parameters, the calculated sample size was 96 subjects.

Definitions of the Study Variables

In this study, the predictor variables are depressive symptoms and spiritual well- being and the dependent variable is quality of life. Theoretical and operational definitions for each study variable are as follows.

Depressive Symptoms

Theoretical definition. Depressive symptoms involve objective indications, disorders, and/or complex symptom clusters and often follows severe life disappointments such as a death in the family, loss of job, or a personal catastrophe (McDowell, 2006). The theoretical definition of depressive symptoms includes affective components such as depressed mood, feelings of guilt, feelings of worthlessness, feelings of helplessness and hopelessness, psychomotor retardation, loss of appetite, loss of energy or fatigue, and sleep disorders (insomnia or hypersomnia), anger, anxiety, hostility, diminished ability to

think or concentrate, markedly diminished interest or pleasure in most or all daily functioning, all of which may last hours or even days (McDowell, 2006).

Operational definition. The operational definition of depressive symptoms is the participant’s total score on the Korean version of the Center for Epidemiologic Studies

Depression Scale (CES-D Scale) which was originally developed by Radloff (1977) and translated and validated for the Korean populations (Cho & Kim, 1998). The 20-item

CES-D Scale is a 4-point Likert scale (0~3) and higher scores indicate more severe depressive symptoms; a score of 16 or higher indicates depressive symptoms experienced in the previous week.

Spiritual Well-Being

Theoretical definition. The theoretical definition of spiritual well-being is an innate feeling and pervasive life perception along with a sense of harmonious interconnectedness with self, significant others, community, environment, nature, and

God or a Higher Being, which reflects a personal satisfaction with life, a realization of the ultimate purpose, direction, affirmation, hopefulness, and meaning of life (Paloutzian

& Ellison, 1982; Reed, 1987).

Operational definition. The operational definition of spiritual well-being is the participant’s overall score on the Korean version of the Spiritual Well-Being Scale

(SWBS) which was originally developed by Paloutzian and Ellison (1982) and translated and validated for the Korean populations (Choi, 1991): the 20-item SWBS is a 6-point

Likert scale with a higher score indicating greater spiritual well-being (Paloutzian &

Ellison, 1982).

Quality of Life

Theoretical definitions. There is not as yet a universally agreed upon definition regarding quality of life for primary liver cancer patients since the concept differs for each person. It is generally agreed that the theoretical definition of quality of life is a multidimensional construct and includes complex domains such as physical functioning, physical role functioning, and general health status including an overall sense of well- being, vitality, social functioning, emotional functioning, and mental health (McDowell,

2006; Rush, et al., 2007).

Operational definition. The operational definition of quality of life is the patient’s summary scores on the SF-12v2 PCS and SF-12v2 MCS calculated by the Korean version of the 12-item Medical Outcomes Study Short Form Health Survey Version 2.0

(SF-12v2) (Ware, et al., 2002).

Instruments

Demographic Data Collection Sheet

A researcher-designed questionnaire was used to collect demographic characteristics including personal profile, socioeconomic profile, and medical profile data from

Keimyung University Hospital Dongsan Medical Center (DMC) and Catholic University of Korea Catholic Medical Center Seoul St. Mary’s Hospital (CMC) (see Appendix A).

Personal profile data were collected including age, gender, marital status, religious preferences, and general health status. Socioeconomic profile data were collected including current employment status, credentials earned, and annual household income.

Medical profile data were also collected including contributing factors to cancer (family history of cancer, history of prior cancer, alcohol use, and smoking), current status and

treatment of HCC (type of HCC, cancer stage, type of treatment), and duration of HCC illness.

The Center for Epidemiologic Studies Depression Scale

The Center for Epidemiologic Studies Depression Scale (CES-D Scale) (Radloff,

1977) was developed to measure depressive symptoms in community populations. This scale has also been used in many studies as a screen for the presence of depressive illness.

Items were selected to represent the major components of depression on the basis of clinical literature and factor analytic studies. Components include depressed mood, feelings of worthlessness, feelings of hopelessness, loss of appetite, poor concentration, and sleep disturbance. The scale does not include items for increased appetite or sleep, anhedonia, psychomotor agitation or retardation, guilt, or suicidal thoughts. The CES-D

Scale items were selected from a pool of items from previously validated existing depression scales, including Beck’s Depression Inventory (Beck, Ward, Mendelson,

Mock, & Erbaugh, 1961), Zung’s Self-raging Depression Scale (Zung, Richards, & Short,

1965), Raskin’s Depression Scale (Raskin, Schulterbrandt, Reatig, & McKeon, 1969), and the Minnesota Multiphasic Personality Inventory (Dahlstrom & Welsh, 1960).

The CES-D Scale is a 20-item, self-administered scale designed to measure the frequency of the occurrence of depressive symptoms during the past week in adults in the general population (Radloff, 1977); it takes about 5 minutes to complete for a majority of individuals. Four of the items are worded in a positive direction to control for response bias. Subjects were asked to rate each item on a scale from 0 to 3 indicating “how often you have felt or behaved in the following ways during the past week including today”.

Responses are rated on a 4-point Likert scale: 0=rarely or none of the time (less than 1 day); 1=some or a little of the time (1~2 days); 2=occasionally or a moderate amount of time (3~4 days); and 3=most or all of the time (5~7 days). A possible range of the total score is 0 to 60; higher scores indicate more severe depressive symptoms. Total severity is calculated by reversing scores for items 4, 8, 12, and 16. For these oppositely worded items, a‘0’ response contributes three points to the overall score; therefore, a higher score indicates more depressive symptoms. A score of 16 or higher indicates a positive indicator for depressive symptoms experienced in the previous week (Radloff, 1977).

Studies for general populations that used the CES-D Scale have reported alpha coefficients with .85~.90, split-half reliability with .76~.85, and test-retest reliability with .51~.67 (Radloff, 1977; Schein & Koenig, 1997; Stommel, et al., 1993). Robert’s study for black and white respondents, using the CES-D Scale, verified reliability with alpha of .85 in different ethnic contexts (Roberts, 1980). In elderly populations, the CES-

D Scale has also been reported to have good internal consistency with alpha of .87~.92

(Davidson, Feldman, & Crawford, 1994). Correspondingly, the CES-D Scale also has been commonly used to measure depressive symptoms in cancer patients. The CES–D in cancer patients reported good internal consistency with alpha of .80~.90 and test-retest reliabilities with alpha of .40~.70 (Devins, et al., 1988; Hann, et al., 1999; Radloff, 1977;

Van Wilgen, et al., 2006).

Studies in which the CES-D Scale was employed for the measurement of depressive symptoms in adult cancer populations have reported good construct validity and internal consistency with alpha of .80~.90 (Andrykowski, et al., 1996; Badger, et al., 2005; Hann, et al., 1999; Katz, Kopek, Waldron, Devins, & Tomlinson, 2004; Kurtz, Kurtz, Stommel,

Given, & Given, 2002; Mortimer, et al., 2005; Reisine, et al., 2005; Schroevers, et al.,

2004; Van Wilgen, et al., 2006; Vernon, et al., 1997; Visser & Smets, 1998).

The CES-D Scale has been translated into various languages including Korean (Cho

& Kim, 1998), Chinese, Indian, Japanese, French, Greek, and Spanish (Gupta, Punetha,

& Diwan, 2006; Naughton & Wiklund, 1993). Additionally, the CES-D Scale has been widely used with Asian populations including Korean (Noh, Kaspar, & Chen,

1998), Vietnamese (Ngo, Tran, Gibbons, & Oliver, 2000), Chinese (Hong, Chan, Zheng,

& Wang, 1992; Rankin, Galbraith, & Johnson, 1993), and Japanese (Iwata, Saito, &

Roberts, 1994). The reliability and validity of the CES-D Scale have also been tested and verified in Korean populations (Bae & Cho, 2004; Hur, 2008; Jang, Kim, & Chiriboga,

2005; Mackinnon, McCallum, Andrews, & Anderson, 1998; Noh, Avison, & Kaspar,

1992; Noh, et al., 1998).

In summary, the CES-D Scale has been established as a valid and reliable measurement tool of depressive symptomatology in cancer patients. Moreover, the CES-

D Scale does not require license permission and is royalty-free for the purpose of academic research. Thus, considering the nature of the target population for this clinical study, the CES-D Scale is appropriate for use in measuring psychological symptoms for patients with primary liver cancer (see Appendix B).

Spiritual Well-Being Scale (SWBS)

The Spiritual Well-Being Scale (SWBS) (Paloutzian & Ellison, 1982) was developed to measure spirituality for both individual and group spiritual well-being in community populations. The scale was originally developed and standardized on students attending religiously-oriented colleges. The scale has also been used in many studies as a general

indicator of well-being. Items were selected to represent the major components of spiritual well-being on the basis of the literature and factor analytic studies. The Spiritual

Well-Being Scale assesses two components of spirituality: religious well-being (a connection to a higher power) and existential well-being (a sense of purpose and meaning in life experiences). The 20-item SWBS is divided into two subscales: the 10 odd- numbered items are the Religious Well-Being Subscale (RWBS) and the 10 even- numbered items are the Existential Well-Being Subscale (EWBS). The 10-item Religious

Well-Being Subscale provides a self-assessment of one’s relationship with God and the

10-item Existential Well-Being Subscale provides a self-assessment of one's sense of life purpose and life satisfaction. Thus, the SWBS provides an overall measure of spiritual well-being as well as subscale scores for religious well-being and existential well-being.

Therefore, overall spiritual well-being is derived by adding the responses to all 20 items, ultimately leading to an exploration of one’s relationship with God and one’s sense of life purpose and life-satisfaction.

The SWBS items were incorporated from a pool of items from previously existing validated scales such as Moberg’s measures of religious well-being and existential well- being (Moberg, 1983). Validity has been reported through factor analysis on the 20 items:

206 students were selected from three religiously-oriented colleges and asked to cluster the items. The total SWBS scores have been reported to correlate positively with the

Purpose of Life Test, Intrinsic Orientation, and Self-Esteem Scales. The Spiritual Well-

Being Scale reported negative correlations with the UCLA Loneliness Scale (Ellison,

1983). The Spiritual Well-Being Scale has been employed with various populations

(Boivin, Kirby, Underwood, & Silva, 1999; Fehring, Miller, & Shaw, 1997; Gioiella,

Berkman, & Robinson, 1998; Mytko & Knight, 1999; Phillips, Mock, Bopp, & Dudgeon,

2006).

The SWBS is a 20-item, self-administered scale designed to measure overall spiritual well-being in adults in the general population and it takes about 5 minutes to complete

(Paloutzian & Ellison, 1982). The SWBS is composed of 20 items, 10 of which assess religious well-being specifically and 10 of which assess existential well-being. Among 20 items, 9 of the items are worded in a negative direction to control for response bias. Thus, reverse coding is needed for negatively worded items. Subjects were asked to rate each item on a scale from 1 to 6 with instructions to select “the choice that best indicates the extent of your agreement or disagreement as the question reflects your personal experience”. Responses are rated on a 6-point Likert Scale: 6=strongly agree,

5=moderately agree, 4=agree, 3=disagree, 2=moderately disagree, and 1=strongly disagree. Both the RWB and the EWB subscales have possible range of score of 10 to 60.

Thus, a possible range of total score of the SWBS is 20 to 120; higher scores indicate greater spiritual well-being. The total score of spiritual well-being is calculated by reversing scores for items 1, 2, 5, 6, 9, 12, 13, 16, and 18. For these oppositely worded items, ‘1’ response contributes 6 points to the overall score; therefore, a higher score indicates greater spiritual well-being (Paloutzian & Ellison, 1982).

High reliability has been demonstrated for the SWBS. Studies for general populations test-retest reliability coefficients for the Religious Well-Being Subscale with alpha of .82~.99, coefficients for the Existential Well-Being Subscale with alpha of .73~.98, and coefficients for the total Spiritual Well-Being Scale with alpha of .82~.99

(Bufford, Paloutzian, & Ellison, 1991). Fernander et al.’s study examining spiritual well-

being in black and white male drug users reported that reliability of the RWBS with alpha of .94 and the EWBS with alpha of .82 (Fernander, Wilson, Staton, & Leukefeld, 2004).

In elderly populations, internal consistency (alpha coefficients) has also been reported for the RWBS with alpha of .82~.94, for the EWBS with alpha of .78~.86, and for the total

SWBS with alpha of .89~.94 (Bufford, et al., 1991; Fehring, et al., 1997; Potter &

Zauszniewski, 2000). Correspondingly, the SWBS also has been commonly used to measure spiritual quality of life for patients in the face of terminal illness such as HIV

(Phillips, et al., 2006; Tuck, McCain, & Elswick, 2001) or cancer (Gioiella, et al., 1998;

Mytko & Knight, 1999; Tang, Aaronson, & Forbes, 2006). The SWBS is probably the best instrument available to assess spiritual well-being for both research and clinical purposes. The SWBS has been shown to be well validated for patients with cancer, having good internal consistency with alpha of .78~.94 and high test-retest reliability

(.82~.99) (Fehring, et al., 1997; Gioiella, et al., 1998; Mytko & Knight, 1999; Paloutzian

& Ellison, 1982).

Although the Spiritual Well-Being Scale is Judeo-Christian oriented, the SWBS is non-sectarian and has been translated into several languages including Korean (Cheung, et al., 2004). Significantly, the SWBS has been extensively used across many religions and disciplines, especially in Korean populations (Cheung, et al., 2004; Kang, Song, Cho,

& Kang, 2004). The reliability and validity of the SWBS have also been tested and verified in Korean populations (Kim & Song, 2003; Kwon & Kim, 2003; Lee, 2002).

In summary, the Spiritual Well-Being Scale has been constantly utilized in diverse fields of research to examine various target populations such as males and females, housewives, high school and college students, young adults and senior adults, religious

individuals and non-religious individuals, patients who are making progress in a rehabilitation program, patients following surgery, chronically critically ill patients, even patients in the face of terminal illness (Bufford, et al., 1991; Miller, 1985; Tuck, et al.,

2001). Thus, the SWBS has been reported as a valid and reliable measurement tool of spiritual well-being in a health care setting as well as in a community setting (Bufford, et al., 1991; Ellison, 1983). Thus, considering the demonstrated, acceptable levels of reliability and validity of this scale, the SWBS may be appropriate for use in this study measuring spiritual well-being for primary liver cancer patients (see Appendix C).

The 12-item Medical Outcomes Study Short Form Health Survey Version 2 (SF-12v2)

Description. The SF-12 was originally developed by Ware et al. (1996) and translated and validated for the Korean populations (Han, Lee, Iwaya, Kataoka, &

Kohzuki, 2004). The 12 item SF-12v2 has two summary scores (SF-12v2 PCS, SF-12v2

MCS) with a higher score of SF-12v2 PCS (Physical Component Summary) representing a greater quality of life from a physical health perspective and with a higher score of SF-

12v2 MCS (Mental Component Summary) representing a greater quality of life from a broad mental health perspective (Ware, Kosinski, & Keller, 1996). The 12-item Medical

Outcomes Study Short Form Health Survey Version 2 (SF-12v2) was derived from the

SF-36 (Ware, et al., 1996). The SF-36 itself was developed as a generic measure of perceived health status from the 136 items used in the RAND (Research And

Development) Medical Outcomes Study (MOS) (Ware, 1996). Consequently, the SF-

12v2 is a generic measure that accurately reproduces the physical and mental summaries that are based on the SF-36 (Ware, et al., 1996). The SF-12 has been reported to be reliable and valid in clinical and population-based research studies in the United States

(Jenkinson, et al., 1997; Salyers, Bosworth, Swanson, Lamb-Pagone, & Osher, 2000;

Sanderson & Andrews, 2002; Sugar, et al., 1998) and many other countries (Gandek, et al., 1998; Lim & Fisher, 1999). The SF-12 scale has also been the most widely used of

MOS scales to monitor practical outcomes and has been proven to be relevant across age, disease, and treatment groups as well as in measuring the full range of health status, including quality of life (Salyers, et al., 2000; Ware, Kosinski, et al., 1995).

The SF-12v2 is a 12-item, self-administered scale, designed to measure overall quality of life in patients 14 years and older; it takes about 2 minutes to complete for a majority of individuals (Ware, et al., 1996). The SF-12 was derived and standardized on patient populations to measure multidimensional definitions for health concepts including quality of life. The SF-12v2 has internal reliability and consistency of .90~.93 and confirmed concurrent, convergent, predictive, and content validity (Gandek, et al., 1998;

Salyers, et al., 2000; Sanderson & Andrews, 2002).

The SF-12 has been translated into more than 30 languages and has been adapted in more than 40 countries including Korea (Rush, et al., 2007; Salek, 1998). In addition, the

SF-12 has been extensively used across many cultures and disciplines, especially in

Asian populations (Ware, Keller, Gandek, Brazier, & Sullivan, 1995). The reliability and validity of the SF-12 have been tested and verified in Korean populations (Ware, Keller, et al., 1995).

The SF-12v2 is comprised of 8 subscales, each one containing multiple choice questions with 3 or 5-point scales: Physical Functioning (PF), Role Physical (RP), Bodily

Pain (BP), General Health (GH), Vitality (VT), Social Functioning (SF), Role Emotional

(RE), and Mental Health (MH). The SF-12v2 is analyzed by calculating the Physical

Component Summary (SF-12v2 PCS) score and the Mental Component Summary (SF-

12v2 MCS) score. The 6-item SF-12v2 PCS is composed of 4 subscales: PF (2 items), RP

(2 items), BP (1 item), and GH (1 item). The 6-item SF-12v2 MCS is also composed of 4 subscales: VT (1 item), SF (1 item), RE (2 items), and MH (2 items).

The detailed description of the 8 subscales is as follows:

1) The Physical Functioning (PF) subscale is a 2-item subscale (items: 2a, 2b) used to measure the presence and severity of limitations in performing physical activities including moderate activities (i.e., moving a table, pushing a vacuum cleaner, bowling, or playing golf) and climbing several flights of stairs. Participants’ responses vary among three levels (1=yes, limited a lot, 2=yes, limited a little, 3=no, not limited at all). For statistical analysis, Physical Functioning subscale items were coded as follows: yes, limited a lot (1), yes, limited a little (2), and no, not limited at all (3). Thus, the possible range of raw scores for the PF subscale is from 2~6 with higher scores indicating better physical functioning.

2) The Role Physical (RP) subscale is a 2-item subscale (items: 3a, 3b) used to measure role limitations due to physical health problems including the level of perceived accomplishments and the limitations incurred in performing work or other activities.

Participants’ responses vary among five levels (1=all of the time, 2=most of the time,

3=some of the time, 4=a little of the time, 5=none of the time). For statistical analysis, the

RP subscale items were coded as follows: all of the time (1), most of the time (2), some of the time (3), a little of the time (4), and none of the time (5). Thus, the possible range of raw scores for the RP subscale is from 2~10 with higher scores indicating better role physical functioning.

3) The Bodily Pain (BP) subscale is composed of a 1-item (item 5) summative subscale used to measure the extent of interference with both work outside the home and house work due to pain during the previous four weeks. Participants’ responses on the questionnaire vary among five levels (1=not at all, 2=a little bit, 3=moderately, 4=quite a bit, 5=extremely). For statistical analysis, the BP subscale item was reversely coded as follows: not at all (5), a little bit (4), moderately (3), quite a bit (2), and extremely (1).

Thus, the possible range of raw scores for the BP subscale range is 1~5 with higher scores indicating a lack of bodily pain.

4) The General Health (GH) subscale is composed of 1 item (item 1) used to measure participants’ general health status. Participants’ responses on the questionnaire vary among five levels (1=excellent, 2=very good, 3=good, 4=fair, 5=poor). For statistical analysis, the GH subscale item was reversely coded as follows: excellent (5), very good

(4), good (3), fair (2), and poor (1). Thus, the possible range of raw scores for the GH subscale is from 1~5 with higher scores indicating better general health status.

5) The Vitality (VT) subscale is a 1-item subscale (item 6b) used to measure subjective feelings with regard to personal energy level. Participants’ responses on the questionnaire vary among five levels (1=all of the time, 2=most of the time, 3=some of the time, 4=a little of the time, 5=none of the time). For statistical analysis, the VT subscale item was reversely coded as follows: all of the time (5), most of the time (4), some of the time (3), a little of the time (2), and none of the time (1). Thus, the possible range of raw scores for the VT subscale is from 1~5 with higher scores indicating more vitality.

6) The Social Functioning (SF) subscale is a 1-item subscale (item 7) used to measure the extent to which physical health or emotional problems have interfered with social activities (like visiting friends, relatives, etc.) during the past 4 weeks. Participants’ responses on the questionnaire vary among five levels (1=all of the time, 2=most of the time, 3=some of the time, 4=a little of the time, 5=none of the time). For statistical analysis, the VT subscale item was coded as follows: all of the time (1), most of the time

(2), some of the time (3), a little of the time (4), and none of the time (5). Thus, the possible range of raw scores for the SF subscale is from 1~5 with higher scores indicating better social functioning.

7) The Role Emotional (RE) subscale is a 2-item subscale (items: 4a, 4b) used to measure problems with work or other activities, including the level of perceived accomplishments and limitations incurred in performing work or other activities, as a result of emotional problems such as feelings of depression or anxiety during the previous 4 weeks. Participants’ responses on the questionnaire vary among five levels

(1=all of the time, 2=most of the time, 3=some of the time, 4=a little of the time, 5=none of the time). For statistical analysis, the RE subscale items were coded as follows: all of the time (1), most of the time (2), some of the time (3), a little of the time (4), and none of the time (5). Thus, the possible range of raw scores for the SF subscale is from 2~10 with higher scores indicating better role emotional performance.

8) The Mental Health (MH) subscale is a 2-item subscale (items: 6a, 6c) used to measure different dimensions of mental health including, feeling calm and peaceful and feeling downhearted and depressed. Participants’ responses on the questionnaire vary among five levels (1=all of the time, 2=most of the time, 3=some of the time, 4=a little of

the time, 5=none of the time). For statistical analysis, item 6c (“Have you felt downhearted and depressed?”) was coded as follows: all of the time (1), most of the time

(2), some of the time (3), a little of the time (4), and none of the time (5), while item 6a

(“Have you felt calm and peaceful?”) was reversely coded as follows: all of the time (5), most of the time (4), some of the time (3), a little of the time (2), and none of the time (1).

Thus, the possible range of raw scores for the MH subscale is from 2~10 with higher scores indicating better mental health.

After data entry, items and subscales were calculated in six steps: step 1) item recoding for the 4 items (items: 1, 5, 6a, 6b) that require reverse recoding; step 2) computing 8 subscale raw scores by summing across items in the same scale (raw scores of the 8 subscales); step 3) transforming raw subscale scores to a 0~100 scale

(transformed scores); step 4) computing z scores of the 8 subscales by utilizing the transformed scores (z-score); step 5) computing aggregated scores of SF-12v2 PCS and

SF-12v2 MCS by utilizing z-scores (aggregated scores); and, finally, step 6) computing summary scores of SF-12v2 PCS and SF-12v2 MCS by utilizing the aggregated scores of

SF-12v2 PCS and SF-12v2 MCS (SF-12v2 PCS and SF-12v2 MCS scores).

In summary, the SF-12v2 PCS and SF-12v2 MCS scores have reported the ability to account for most of the variance in the 8 subscales, and also to differentiate well between groups known to differ in the occurrence and seriousness of physical and mental illness, acute symptoms, age, and self-reported changes in health status (Ware, et al., 1996). The

SF-12v2 provides summary scores of SF-12v2 PCS and SF-12v2 MCS, as well as individual subscale scores for PF, RP, BP, GH, VT, SF, RE, and MH.

Many studies have confirmed the interpretation of the SF-12v2 PCS as a measure of quality of life from a physical health perspective by generating statistically significant differences in SF-12v2 PCS scores between one or more groups. Correspondingly, the

SF-12v2 MCS also has been reported as the most valid instrument for measuring quality of life from a mental health perspective as well as distinguishing between groups identified on the basis of mental illness diagnosis, thus supporting concurrent validity.

Therefore, the overall quality of life is derived by interpreting summary scores of SF-

12v2 PCS and SF-12v2 MCS, ultimately leading to self-assessments of one’s own health status. Additionally, the SF-12 has been constantly utilized in diverse fields of research in order to examine a wide variety of patient populations with varied medical conditions such as males and females, young adults and senior adults, chronic disease patients, psychiatric patients, critically ill patients, and patients in the face of terminal illness

(Clart, Rieker, Propert, & Talcott, 1999; Rush, et al., 2007). The SF-12 allows for easy interpretation and presentation of results (McDowell, 2006; Ware, Kosinski, et al., 1995).

Furthermore, the SF-12 has been reported as a valid and reliable measurement tool to assess the full range of health status in health care settings including quality of life. The

SF-12 has also been successfully used in cross-sectional studies with different populations. Thus, considering the verified acceptable levels of reliability and validity of this scale, the SF-12 may be suitable for use in this study measuring quality of life for primary liver cancer patients (see Appendix D).

Data Collection

Methods

In order to collect the data for this study, three methods were used: (1) face-to-face interviews with structured instruments, (2) medical profile data collection from electronic medical records (EMR), and (3) in-depth interviews with open-ended questions. After obtaining informed consent, initial screening of the medical profile data (factors contributing to cancer, current status and treatment of HCC, duration of HCC illness) was collected through electronic medical records. A structured face-to-face interview with instruments (CES-D Scale, SWBS, and SF-12v2) in a hospital setting was used. The face- to-face structured interviews helped participants self-respond accurately to the Likert

Scales in the instruments. In order to explore the lived experiences of patients with primary liver cancer, an unstructured in-depth phenomenological interview of each participant was conducted. The interview was recorded by two voice recorders.

Procedure

Participants’ data were collected using the following steps:

1. The investigator obtained authorization and IRB approval from both hospitals (the

DMC and the CMC) by submitting official documentation regarding the Ph.D

student’s status, the research proposal, and IRB application form prior to the data

collection.

2. After obtaining IRB approval from Case Western Reserve University in Cleveland,

Ohio, USA, the DMC, and the CMC in Korea (see Appendix E), the researcher

explained the purpose of this study and the eligibility criteria to all care team

members in during team meetings.

3. The investigator contacted the primary care team members assigned to the patient.

The primary team members included selected hospitals’ head nurses and nursing staff members in the units as well as physicians and surgeons.

4. After obtaining authorization from both hospitals, the care team screened clinical databases and the new admission report every morning in order to select potential subjects who met eligibility requirements for this study.

5. After the care team members confirmed that the patients were capable of informed consent and willing to participate in this study, all eligible participants were given an informed consent form with a letter of introduction, in the Korean language, regarding this study (see Appendix F). The informed consent for the potential subjects was explained by the researcher along with the letter of introduction (see

Appendix G). The informed consent was signed before beginning the research study. The informed consent from the patients was obtained at either inpatient units or outpatient clinics using conference rooms to ensure patients’ privacy and a secure environment.

6. After obtaining patients’ consent to participate in this study, the medical profile data were collected by the researcher’s review of patients’ electronic medical records (see Appendix A).

7. Self-reported data (background open-ended questions, demographics, CES-D

Scale, SWBS, and SF-12v2) were administered to the consenting participants by the researcher via face-to-face interviews (see Appendices A~D). These data were collected at either inpatient units or outpatient clinics using conference rooms to

ensure patients’ privacy and a secure environment. During the interview process,

the individual’s right to stop or continue the interview was again explained.

8. Measurement tools were administered by giving individual forms to each

participant. If the subject preferred, the investigator read the questionnaires so that

the participants could circle or mark their answers.

9. If the participants preferred to complete the instruments from the packet by

themselves, the completed instruments were collected by the researcher who also

examined each one for missing data. To collect quantitative data,

approximately12 minutes were allotted for each participant. Immediately after

completing each instrument, the investigator reviewed the respective instrument

to minimize the incidence of missing data. The completion of the qualitative data

collection required an average of 20~35 minutes.

Data Analysis

Quantitative Data Analysis

A subject’s ID number was assigned to each participant. For the purpose of data analysis, this ID number was placed on each instrument. A codebook was developed prior to data collection. Immediately after the data collection from a subject, the data were carefully checked and data cleaning was thoroughly executed.

After careful examination of the entire data if there were continuously repetitive patterns or significant amounts of missing data which could influence the key variables, outliers and extreme values of cases in the raw data were also examined by analyzing frequency distributions and residual scatterplots.

All data were entered into SPSS 20 (IBM Corporation, 2012) for statistical analysis.

All raw data entered into the computer were checked for errors through a data cleaning process. All demographic characteristics (personal profile, socioeconomic profile, medical profile) were analyzed by univariate descriptive statistical analyses (percentages, frequency, mean, standard deviation, median, range, skewness, and kurtosis). There were no missing data.

To examine correlations between age and depressive symptoms scores, spiritual well-being scores, QOL-PCS scores, and QOL-MCS scores, Pearson’s correlation was performed. To compare subgroup scores of depressive symptoms, spiritual well-being,

QOL-PCS, and QOL-MCS in terms of gender, marital status, and current employment status, independent samples t-tests were utilized. To compare subgroup scores of depressive symptoms, spiritual well-being, QOL-PCS, and QOL-MCS in terms of religious preferences and credential earned, one-way ANOVA tests were performed. An alpha less than or equal to .05 was set in determining all statistical significance through descriptive analyses.

Prior to conducting multiple regression analysis, regression diagnostic tests were performed with attention to zero mean, residual normality, independence, homoscedasticity, multicollinearity, outliers, and influence (Cook’s Distance). Outliers were analyzed by examining Cook’s D to evaluate whether there were influential data points. Multiple regression analyses were performed with depressive symptoms, spiritual

2 well-being, and quality of life data. The amount of variance accounting for (R adj) and the significance of predictor variables were also analyzed.

Qualitative Data Analysis

An unstructured in-depth phenomenological interview was conducted, guided by open-ended questions. The open-ended questions were presented after the quantitative data were collected. Interviews were conducted until saturation was achieved. A total of

40 primary liver cancer patients were interviewed. The average response time for the qualitative data questions was 26.72 minutes with a range of approximately 20 to 35 minutes. Interviews were recorded using two voice recorders. The recorded interviews were transcribed verbatim into Korean by the researcher. All the recorded interviews were reviewed individually by the researcher for accuracy by listening to each file while simultaneously reading the transcription. The transcribed Korean text was translated into

English and examined by two bilingual experts. In order to reduce discrepancies between

Korean transcription and English translated text, back translation from English into

Korean was executed and confirmed by two bilingual experts. Finally, the verified

English version of the transcription was used to conduct qualitative data analyses which was categorized into themes based on Giorgi’s method (Giorgi, 2005).

Following categorization of the themes and the emergence of the core variables, the researcher conducted the steps of concept modification and integration and moved to a theoretical level. As the researcher read the transcribed interviews, key words and phrases were highlighted. Words and phrases from the interviews were integrated with the stories of participants to analyze patterns, variations or relationships (Streubert & Carpenter,

2010). Throughout the process of qualitative data analysis, ATLAS.ti 6 program

(Scientific Software Development, 2011) was used.

Protection of Human Subjects

Considering the sensitive and emotionally distressing nature of cancer research, human subject protection guidelines were followed with strict confidentiality.

Institutional Review Board (IRB) permissions to conduct this study were obtained from the Keimyung University Hospital Dongsan Medical Center in Daegu (DMC) in Korea and the Catholic University of Korea Catholic Medical Center Seoul St. Mary’s Hospital

(CMC) in Seoul in Korea, and also from Case Western Reserve University in Cleveland,

Ohio in the United States.

The interviews were conducted in a manner that assured patients’ privacy and in a comfortable environment, using a conference room. During the interview, if the patient displayed aggravated symptoms, fatigue, or being emotionally overwhelmed by distress, the interview was stopped and reported immediately to the health care team in order to provide support for the patient. Patients who demonstrated depressive symptoms during the interview were also reported and referred to the care team.

To ensure full data security protection, each subject was given a code number to protect the respondent’s identity. Informed consent was obtained prior to the interview and a cover letter with study information was given to each participant. In addition, subjects were asked to consent to the release of their medical records in order to collect medical profile information which was obtained from each hospital’s electronic medical records. All collected data were coded with numbers and the participants’ registry files were kept separately from the code books. The researcher used a password protected computer. The researcher will keep a master list of the participants’ records with names; the code book will be kept in a locked and secure place for 3 years.

CHAPTER 4

Results

The results of the statistical data analyses are presented in this chapter in order to address the purpose of this study and to answer the research questions. Thus, this chapter is organized into 9 sections: screening of the data, preliminary data examination

(including regression diagnostics), data analyses results of demographic characteristics

(description of the sample, personal profile, socioeconomic profile, medical profile, and summary of the instrument results by demographic characteristics), predictor variables

(depressive symptoms and spiritual well-being), dependent/outcome variable (quality of life), research question 1, research question 2, research question 3, and summary.

Screening of the Data

Data were screened and double-checked for the purpose of data cleaning. No data were missing. The database was screened prior to analyses for accuracy in terms of outliers, such as unusual frequencies, means, or standard deviation, any of which would indicate inaccurate data entry or mishandled/missing data.

Preliminary Data Examination

Unequal variances (heteroscedasticity) are one of the most common violations of assumptions. In the preliminary data inspection, regression diagnostics were performed as well as examination of homogeneity (Burns & Grove, 2005).

Regression Diagnostics

The main statistical analysis methods used were Pearson’s correlation and multiple regression to examine the relationships among the predictor variables and the dependent variable. To ensure accuracy and decrease biased statistical results as well as to examine

a model fit, the assumptions for multiple regression were inspected by conducting regression diagnostic tests: testing for zero mean, testing for residual normality, testing for independence, testing for homoscedasticity, testing for multicollinearity, testing for outliers, and testing for influence (Cook’s Distance).

For the outcome measurement, although the SF-12v2 scale does not have a single total score calculated, two components’ summary scores were available for interpretation:

1) SF-12v2 PCS (Physical Component Summary) and 2) SF-12v2 MCS (Mental

Component Summary). Thus, for regression diagnostics, the SF-12v2 PCS and the SF-

12v2 MCS were entered separately, one variable at a time, in the dependent variable dialog box. For each entry, two predictor variables (CES-D, SWBS) were entered simultaneously in the independent variable dialog box.

Testing for zero mean. Testing for zero mean is a good confirmation of the correctness of the residuals. The mean of the standard residual should be zero, and the SD of the standard residual should be approximately 1. For the SF-12v2 PCS, one of the subscales of the SF-12v2, the mean of the standard residual was zero and the SD of the standard residual was 0.989. In addition, for the SF-12v2 MCS, another subscale of the

SF-12v2, the mean of the standard residual was zero, and the SD of the standard residual was 0.989. Therefore, the assumption was met.

Testing for residual normality. A normal distribution for single variables was supported using statistical tests of skewness and kurtosis, as well as graphic testing, including histograms and normal probability plots. The normal distribution of the histogram is determined by the absolute skew values not falling outside of 1.0, presenting a unimodal pattern with a normal curve (Mertler & Vannatta, 2010).

As described in Table 1, the absolute values of skewness for predictor variables

(depressive symptoms, spiritual well-being) were all within acceptable ranges of ǀ1.0ǀ, demonstrating unimodal patterns for each variable. Therefore, no substantially skewed distribution curves were detected in the predictor variables. Moreover, in the calculated kurtosis graphs of the predictor variables, no extreme flat or peaked distributions were detected. Likewise, the absolute values of skewness of the subscales (SF-12v2 PCS, SF-

12v2 MCS) for the dependent variable (QOL) were also within acceptable ranges of ǀ1.0ǀ, representing unimodal patterns for each subscale. Hence, no considerably skewed distribution curves were observed in the dependent variable. Furthermore, the calculated kurtosis graphs of the subscales of the dependent variable also verified the fact that no extreme flat or peaked distributions were detected. In addition, for the SF-12v2 PCS, comparison between the observed residuals with the expected residuals showed a straight line. The standard residual minimum and maximum were within -2.5~2.0, therefore falling within ±3SD in the SF-12v2 PCS. Similarly, for the SF-12v2 MCS, comparison between the observed residuals with expected residuals showed a straight line as well.

The standard residual minimum and maximum were within -1.7~2.3, also falling within

±3SD in the SF-12v2 MCS. Therefore, the assumption of normality was satisfied.

Testing for independence. To ensure independence, the value of one residual should not influence other residuals. For this study, the predictor variables were collected at one time point; therefore, independence of residuals could not occur. The Durbin-Watson statistic should be approximately 2.0; much higher values (>2.5) or lower values (<1.5) indicate that there is a problem with independence. For the SF-12v2 PCS, the Durbin-

Watson statistic was 2.0; for the SF-12v2 MCS, the Durbin-Watson statistic was also 2.0.

There were no problems of autocorrelation; therefore, the data did not violate the assumption of independence.

Table 1 Means, Standard Deviations, Skewness, and Kurtosis of the Study Variables (N=96)

Mean Actual Possible Variables Scales (±SD) Range Range Skewness Kurtosis

Depressive CES-D Scale1 19.89 4~46 0~60 .50 -.74 Symptoms (±11.28)

Spiritual SWBS2 58.15 36~92 20~120 .55 .10 Well-Being (±12.63) RWBS2a 29.63 18~47 10~60 .45 -.32 (±6.68) EWBS2b 28.52 18~45 10~60 .58 -.01 (±6.50)

QOL SF-12v23 SF-12v2 PCS3a 35.88 20.32~55.33 0~100† .37 -.19 (±7.90) SF-12v2 MCS3b 44.67 26.87~62.60 0~100† -.20 -.03 (±7.60)

Notes: 1 Higher scores indicate higher levels of depressive symptoms. Cutoff score of 16 is indicative of significant or mild depressive symptomatology. 2 Higher scores of SWBS indicate higher spiritual well-being. There is no cutoff point. 2a Higher scores of RWBS (odd-numbered items) indicate higher religious well-being. 2b Higher scores of EWBS (even-numbered items) indicate higher existential well- being. 3 Total score of SF-12v2 is not calculated. However, sub-scores (SF-12v2 PCS, SF-12v2 MCS) are calculated. 3a Higher scores of the SF-12v2 PCS (Physical Component Summary) indicate higher QOL from a physical health perspective. 3b Higher scores of the SF-12v2 MCS (Mental Component Summary) indicate higher QOL from a broad mental health perspective. † The possible range of raw scores

Testing for homoscedasticity. To confirm homoscedasticity, the variance of the residuals at one point should actually be equal to the variance at another point on the scatter plot. For both the SF-12v2 PCS and the SF-12v2 MCS, clusters were evenly and

randomly scattered around the zero line. Hence, the assumption of homoscedasticity was satisfied.

Testing for multicollinearity. To examine multicollinearity, low values of Tolerance

(Tolerance≤.20) indicate a potential problem of multicollinearity and much lower values of Tolerance (Tolerance≤.10) indicate a multicollinearity problem. For further examination, the VIF (variance inflation factor) value should be less than 10 (Tabachnick

& Fidell, 2007). The effect of multicollinearity would limit the ability of each variable to predict any other variables: a high multicollinearity indicates problems with close interrelationships among the independent variables (Tabachnick & Fidell, 2007). In this study, the Tolerance value was .31, and the VIF value was 4.88 which did not exceed 10.

Thus, the estimated values of the Tolerance and the VIF between predictor variables in this study were within the acceptable range. Therefore, no multicollinearity problem was detected.

Testing for outliers. The effect of outliers on the equation must be considered in the regression analysis and managed by deletion or transformation if they exist (Mertler &

Vannatta, 2010). The formula for calculation of Leverage Point is 3*(number of predictors + 1)/number of samples=3*(2+1)/96=.09. In the residual statistics of this study, the Leverage Values for both SF-12v2 PCS and SF-12v2 MCS were .19, both of which were greater than .09. In this study, with 2 predictors and 96 samples, any value with a leverage point greater than .09 needs to be examined for outliers. On the scatter plots, some outliers were detected. Nevertheless, the regression models were statistically significant for both SF-12v2 PCS (p<.05) and SF-12v2 MCS (p<.05). Thus, for further

assessment of the outliers, before deletion or transformation of the data, the Cook’s

Distance (Cook’s D) and the standardized residuals were examined.

Testing for influence. The Cook’s Distance (Cook’s D) measures the combined influence of a case being an outlier on y and x or the set of x’s. In other words, a point that has a greater Cook’s D from the rest of the sample population of the points is said to have higher leverage since it has a greater influence on the slope or coefficients of the regression equation. The value of Cook’s D greater than 1.0 indicates that the problematic outliers exert significant influence on the regression equation. In this study, the value of Cook’s D was 0.06 for the SF-12v2 PCS and 0.21 for the SF-12v2 MCS equations. Thus, the outliers did not significantly influence the data points in order to support generalizability of the sample to the population. Therefore, the detected outliers in the sample were retained in the analysis as suggested by Tabachnick and Fidell (2007).

In summary, as the result of the regression diagnostic tests, the assumptions of zero mean, residual normality, independence, homoscedasticity, absence of multicollinearity, and absence of significant outliers, were all satisfied.

Demographic Characteristics

Description of the Sample

Data were collected over a three-month period from two university hospitals (DMC,

CMC) in South Korea. There were 188 potential patients diagnosed with primary liver cancer who were referred within the 3 months. The 188 potential subjects were initially screened through reviewing patients’ medical records or verbal communication by the care team in order to inspect the inclusion/exclusion criteria for the study. The screened list of patients was referred to the researcher to proceed to face-to-face interviews. Within

3 months, the total number of patients on the screened list from the care team was 96. For quantitative data collection, 96 patients agreed to participate and were consecutively recruited. Out of 96 patients on the screened list for qualitative data collection, 40 patients were also consecutively recruited until a point of data saturation was reached.

Therefore, there were no missing data and the response rate was 100%. The demographic characteristics are described in three components: personal profile (Table 2), socioeconomic profile (Table 3), and medical profile (Table 4~Table 6). The comparison results of subgroup scores of depressive symptoms, spiritual well-being, QOL-PCS, and

QOL-MCS, in terms of demographic characteristics, were also summarized as well as the association between age and the study variables.

Personal Profile

The mean age of the sample was 60.89 years (SD=10.03) with a median age of 60 years and a range of 34~89 years. Of the participants, 74.0% (n=71) were male and

26.0% (n=25) were female. A total of 80.2% (n=77) of the respondents were married while 19.8% (n=19) were not married. As depicted in Table 2, according to the dichotomized religious preferences, a total of 88.5% (n=85) reported their religious preferences, while 11.5% (n=11) reported that they did not have any religious preferences.

Of these participants, 52.0% (n=50) reported some type of Christian affiliation, primarily

Protestant denomination (38.5%, n=37) followed closely by those who were Buddhist

(36.5%, n=35). The majority of respondents reported their general health status as “fair”

(59.4%, n=57) while only a few reported their health status as “good” (7.3%, n=7) (Table

2).

Socioeconomic Profile

As presented in Table 3, more than half of the participants had no jobs (51.0%, n=49) while less than half were employed (49.0%, n=47). Thus, the annual household incomes were low or very low: the majority reported low annual income (49.0%, n=47), and 29 respondents (30.2%) reported very low annual income. A total of 51.0% (n=49) of the respondents earned a high school diploma, a GED, or some college education; 34.4%

(n=33) reported less than a high school education, while only 14.6% (n=14) earned a bachelor’s degree (Table 3).

Table 2 Personal Profile of the Patients (N=96)

Variables Frequency (%) Mean (SD)

Age (years) 60.89 (10.03) Gender Male 71 (74.0) Female 25 (26.0) Marital Status Married 77 (80.2) Not married 19 (19.8) Religious Preferences Catholic 13 (13.5) Protestant 37 (38.5) Buddhist 35 (36.5) None 11 (11.5) Religious vs. Non-Religious Preferences Yes 85 (88.5) No 11 (11.5) Christian Affiliation vs. Non-Christian Affiliation Yes 50 (52.1) No 46 (47.9) General Health Status Very poor 14 (14.6) Poor 18 (18.8) Fair 57 (59.4) Good 7 ( 7.3)

Table 3 Socioeconomic Profile of the Patients (N=96)

Variables Frequency (%)

Current Employment Status Employed 47 (49.0) Not employed 49 (51.0) Credentials Earned Less than high school 33 (34.4) High school diploma/GED/Some college 49 (51.0) College (bachelor’s degree) 14 (14.6) Annual Household Income Very low 29 (30.2) Low 47 (49.0) Middle 19 (19.8) High 1 ( 1.0)

Medical Profile

Factors contributing to cancer. As described in Table 4, only 9 patients (9.4%) had a family history of cancer(s). None of the respondents had a prior history of cancer(s).

Thirty one patients (32.3%) had a history of alcohol use, and 33 patients (34.4%) were ex-smokers.

Current status and treatment of HCC. The participants’ current status and treatment of

HCC are summarized in Table 5. Most patients diagnosed were (67.7%, n=65) HCC with hepatitis B, 26 patients (27.1%) were HCC with hepatitis C, and a few patients (5.2%, n=5) were HCC with hepatitis A. The majority of the patients had localized cancer

(82.3%, n=79) and a substantial number of the patients had metastatic advanced stage of cancer (17.7%, n=17). All of the patients were receiving chemotherapy; of these patients,

42.7% (n=41) were receiving radiation therapy; 41 patients (42.7%) had simply a trans- arterial chemoembolization procedure; 27 patients (28.1%) had a trans-arterial chemoembolization combined with radio frequency ablation procedures; a very small

number of cases (9.4%, n=9) had non-liver-related surgery due to metastatic cancer found in other parts of the body (Table 5).

Table 4 Factors Contributing to Cancer (N=96)

Variables Frequency (%)

Family History of Cancer(s) No 87 (90.6) Yes 9 ( 9.4) History of Prior Cancer(s) No 96 (100.0) History of Alcohol Use No 65 (67.7) Yes 31 (32.3) History of Cigarettes, Cigars, or Tobacco Smoking Non-smoker 63 (65.6) Ex-smoker 33 (34.4)

Table 5 Current Status and Treatment of HCC (N=96)

Variables Frequency (%) Type of HCC1 HCC with hepatitis A 5 ( 5.2) HCC with hepatitis B 65 (67.7) HCC with hepatitis C 26 (27.1) Cancer Stage Localized 79 (82.3) Metastatic advanced 17 (17.7) Type of Treatment(s) Chemotherapy 96 (100.0) Radiation therapy 41 (42.7) Surgery 9 ( 9.4) TACE2 41 (42.7) TACE & RFA3 27 (28.1) Note: 1 HCC: Hepatocellular carcinoma, also known as primary liver cancer 2 TACE: Trans-arterial chemoembolization 3 RFA: Radio frequency ablation

Duration of HCC illness. In the total population sample of the study, the mean duration of the illness since the HCC diagnosis was 1.75 years with a median value of

1.27 years (SD=1.66) and a range of 0.08~5.98 years. As categorized in Table 6, the majority of the patients in the total population (46.9%, n=45) had less than 1 year of duration of the HCC illness and only a few of these (7.3%, n=7) reported 5 years or more.

Table 6 Duration of Illness since HCC Diagnosis (N=96)

Duration Frequency (%)

< 1 year 45 (46.9) 1 year ~ less than 2 years 17 (17.7) 2 years ~ less than 3 years 13 (13.5) 3 years ~ less than 4 years 8 ( 8.3) 4 years ~ less than 5 years 6 ( 6.3) 5 years or more 7 ( 7.3)

Summary of the Instrument Results by Demographic Characteristics

There was no evidence reported in the literature that suggested age, gender, marital status, religious preference, current employment status, credential earned, or family history of cancer influenced depressive symptoms, spiritual well-being, or quality of life in primary liver cancer patients. In order to examine correlations, Pearson’s correlation was conducted to inspect the associations: between age and depressive symptoms; between age and spiritual well-being; between age and QOL-PCS; between age and

QOL-MCS. None of the study variables were significantly correlated with age.

In order to compare subgroup scores of depressive symptoms, spiritual well-being,

QOL-PCS, and QOL-MCS in terms of gender, marital status (married/not married), current employment status (employed/not employed), family history of cancer (yes/no), and cancer stages (localized/metastatic advanced), independent samples t-tests were

performed. None of the study variables were significantly correlated with these demographic factors.

In order to compare subgroup scores of depressive symptoms, spiritual well-being,

QOL-PCS, and QOL-MCS in terms of religious preference, credential earned, and type of HCC, one-way ANOVA tests were performed. As for subgroup scores of depressive symptoms, spiritual well-being, QOL-PCS, and QOL-MCS, no statistically significant differences were found in terms of these demographic factors.

Interestingly, the only demographic factor that presented significant correlations in terms of the study variables was the duration of the HCC illness in years. There was a significant positive correlation between the duration of the HCC illness in years and depressive symptoms (r=.97, p<.05). In addition, there were significant negative correlations between the duration of the HCC illness in years and spiritual well-being

(r=-.87, p<.05); between the duration of the HCC illness in years and QOL-PCS (r=-.40, p<.05); and between the duration of the HCC illness in years and QOL-MCS (r=-.51, p<.05).

Predictor Variables

Depressive Symptoms

Reliability of the CES-D Scale. The reliability of the CES-D Scale was calculated using item analysis and internal consistency. In this study, the examination of the coefficient of reliability revealed an excellent internal consistency for the entire CES-D

Scale with a Cronbach’s alpha of .80.

Results of the CES-D Scale. Depressive symptoms were measured by using the CES-

D Scale, asking the participants to circle how often they had felt or behaved in a certain

way during the previous week. A score of “0” indicated “rarely or none of the time

(<1day)”, “1” indicated “some or a little of the time (1~2 days)”, “2” indicated

“occasionally or a moderate amount of the time (3~4 days)”, and “3” indicated “most or all of the time (5~7 days)”. Table 7 presents the mean, standard deviation, median, actual range, possible range, and cutoff point for participants with depressive symptoms. The mean score for depressive symptoms was 19.89 (SD=11.28) with a median score of 18.00, and a range of 4~46. The cutoff point of the CES-D is 16 with higher scores indicating a higher level of depressive symptoms. In other words, scores of 16 or greater on the CES-

D are traditionally interpreted as suggestive of clinically significant depression. In this study, 57 patients (59.4%) reported that their CES-D scores were 16 or greater.

Table 7 Mean, Standard Deviation, Median, Actual Range, Possible Range, and Cutoff Point of Predictor Variables (N=96)

Actual Possible Cutoff Point (≥16) Variable Mean (±SD) Median Range Range n (%)

CES-D Total Score 1 19.89 (±11.28) 18.00 4~46 0~60 57 (59.4)

SWBS Total Score 2 58.15 (±12.63) 57.00 36~92 20~120 - RWBS Subtotal Score 2a 29.63 (± 6.68) 29.00 18~47 10~60 - EWBS Subtotal Score 2b 28.52 (± 6.50) 27.00 18~45 10~60 -

Note: 1 Higher scores indicate higher levels of depressive symptoms. Cutoff score of 16 is indicative of significant or mild depressive symptomatology. 2 Higher scores of SWBS indicate higher spiritual well-being. There is no cutoff point. 2a Higher scores of RWBS (odd-numbered items) indicate higher religious well-being. 2b Higher scores of EWBS (even-numbered items) indicate higher existential well- being.

Spiritual Well-Being

Reliability of the SWBS. The reliability of the SWBS was calculated using item analysis and internal consistency. In this study, the inspection of the coefficient of reliability revealed a highly reliable internal consistency for the RWBS (10 items 93

Cronbach’s α=.84) and also for the EWBS (10 items: Cronbach’s α=.75). In addition, the overall SWBS was found to be highly reliable (20 items: Cronbach’s α=.89) in this study.

Results of the SWBS. Spiritual well-being was measured by using the SWBS, asking the participants to circle the extent of their agreement or disagreement regarding which questions reflected their personal experiences. Table 7 describes the descriptive statistics for the SWBS, including mean, standard deviation, median, actual range, and possible range as well as presents the descriptive statistics for two subscales. The total score of

SWBS is calculated by aggregating scores of the two subscales (RWBS, EWBS). On the

Religious Well-Being Subscale (RWBS), the lowest religious well-being score possible is

10 and the highest is 60. In this study, the mean score for religious well-being was 29.63

(SD= 6.68) with a median score of 29.00 and a range of 18~47. Higher scores of the

RWBS indicate higher religious well-being. On the Existential Well-Being Subscale

(EWBS), the lowest existential well-being score possible is 10 and the highest is 60. In this study, the mean score for existential well-being was 28.52 (SD= 6.50) with a median score of 27.00 and a range of 18~45. Higher scores of the EWBS indicate higher existential well-being. Correspondingly, the lowest spiritual well-being score possible on the SWBS is 20 and the highest is 120. In this study, the mean score for spiritual well- being was 58.15 (SD=12.63) with a median score of 57.00 and a range of 36~92. There is no cutoff point; higher scores of SWBS indicate higher spiritual well-being.

Dependent Variable

The dependent variable in this study was quality of life. In order to measure quality of life, the SF-12v2 was used. However, a total score of the SF-12v2 instrument for measuring quality of life is not calculated by simply summing all 12 items. Instead, there

are two summary sub-scores available to interpret the results: 1) SF-12v2 PCS (Physical

Component Summary), representing QOL-PCS (quality of life from a physical health perspective); and 2) SF-12v2 MCS (Mental Component Summary), representing QOL-

MCS (quality of life from a broad mental health perspective).

Reliability of the SF-12v2

The reliability of the SF-12v2 was calculated using item analysis and internal consistency. In this study, the investigation of the coefficients of reliability revealed a good internal consistency for the SF-12v2 PCS (6 items: Cronbach’s α=.78) and the SF-

12v2 MCS (6 items: Cronbach’s α=.85). Consequently, the overall SF-12v2 was found to be highly reliable (12 items: Cronbach’s α=.89).

QOL-PCS

Table 8 presents the descriptive statistics for the SF-12v2 PCS, including mean, standard deviation, median, the actual range, and the possible range of raw scores. The subtotal summary score of SF-12v2 PCS is calculated based on the aggregated scores of 4 subscales (PF, RP, BP, GH) by using the scoring formula. On the SF-12v2 PCS, the lowest raw score of QOL-PCS is 0 and the highest is 100. In this study, the mean score for the SF-12v2 PCS was 35.88 (SD=7.90) with a median score of 34.99, and a range of

20.32~55.33. Higher scores of SF-12v2 PCS indicate higher quality of life from a physical health perspective.

QOL-MCS

Quality of life from a broad mental health perspective was measured by using the

SF-12v2 MCS asking the participants to circle the extent to which the questions reflected their conditions relative to their health functioning. Table 8 presents the descriptive

statistics for the SF-12v2 MCS, including mean, standard deviation, median, the actual range, and the possible range of raw scores. The subtotal summary score of SF-12v2

MCS is calculated based on the aggregated scores of 4 subscales (VT, SF, RE, MH) by using the scoring formula. On the SF-12v2 MCS, the lowest raw score of QOL-MCS is 0 and the highest is 100. In this study, the mean score for the SF-12v2 MCS was 44.67

(SD=7.60) with a median score of 45.44 and a range of 26.87~62.60. Higher scores of

SF-12v2 MCS indicate higher quality of life from a broad mental health perspective.

Table 8 Mean, Standard Deviation, Median, Actual Range, and Possible Range of Raw Scores of Dependent Variable (N=96)

Instrument Actual Possible Variable /Components Mean (±SD) Median Range Range

QOL SF-12v2 1 SF-12v2 PCS1a 35.88 (±7.90) 34.99 20.32~55.33 0~100† SF-12v2 MCS1b 44.67 (±7.60) 45.44 26.87~62.60 0~100†

Note: 1 Total score of SF-12v2 is not calculated. However, sub-scores (PCS, MCS) are calculated. 1a Higher scores of the SF-12v2 PCS (Physical Component Summary) indicate higher QOL from a physical health perspective. 1b Higher scores of the SF-12v2 MCS (Mental Component Summary) indicate higher QOL from a broad mental health perspective. † The possible range of raw scores

Research Question #1

The first research question is: “Is there a relationship between depressive symptoms, spiritual well-being, and quality of life for patients with primary liver cancer in Korea?”

Relationship between Depressive Symptoms and Spiritual Well-Being

There was a significant negative correlation between the CES-D Scale and SWBS

(r=-.94; p<.01). The lower the scores of depressive symptoms reported, the higher the scores of spiritual well-being reported by the respondents (Table 9).

Relationship between Depressive Symptoms and Quality of Life

There was a significant negative correlation between the CES-D Scale and SF-12v2

PCS (r=-.47; p<.01): the lower the scores of depressive symptoms reported, the higher the scores of quality of life from a physical health perspective reported by the patients

(Table 9). Accordingly, there was a significant negative correlation between the CES-D

Scale and SF-12v2 MCS (r=-.49; p<.01): the lower the scores of depressive symptoms reported, the higher the scores of quality of life from a mental health perspective reported by the patients (Table 9).

Relationship between Spiritual Well-Being and Quality of Life

There was a statistically significant positive correlation between the SWBS and SF-

12v2 PCS (r=.58; p<.01): the higher the scores of spiritual well-being reported, the higher the scores of quality of life from a physical health perspective reported by the patients (Table 9). Similarly, there was a statistically significant positive correlation between SWBS and SF-12v2 MCS (r=.48; p<.01): the higher the scores of spiritual well- being reported, the higher the scores of quality of life from a mental health perspective also reported by the patients (Table 9).

In summary, in spite of the fact that there were statistically significant correlations between the predictor variables, further diagnostic tests demonstrated no multicollinearity problem. The predictor variables were assessed for Tolerance and value inflation factor

(VIF). In this study, the Tolerance value was .11, and the VIF value was 8.88 which did not exceed 10. The estimated values of the Tolerance and the VIF between predictor variables in this study were within the acceptable range (Mertler & Vannatta, 2010), indicating there was no multicollinearity problem detected.

Table 9 Research Question #1: Pearson’s Correlation Matrix Summary (N=96) Variable 1 2 3 4

1. CES-D Scale -.94** -.47** -.49** 2. SWBS .58** .48** 3. SF-12v2 PCS -.36** 4. SF-12v2 MCS

**p<.01

Research Question #2

The second research question is: “To what extent do depressive symptoms and spiritual well-being predict the quality of life for patients with primary liver cancer in

Korea?” Despite the fact that there is one dependent variable (QOL), to verify the extent of prediction to the QOL, for the purpose of data analysis, the second research question was divided into two sub-questions because the QOL measurement scale (SF-12v2) does not have a single total score calculated: 2a) “To what extent do depressive symptoms and spiritual well-being predict the quality of life from a physical health perspective (QOL-

PCS) for patients with primary liver cancer in Korea?”; 2b) “To what extent do depressive symptoms and spiritual well-being predict the quality of life from a broad mental health perspective (QOL-MCS) for patients with primary liver cancer in Korea?”

Research Question #2a

The first sub-question of the original research question 2 is: “To what extent do depressive symptoms and spiritual well-being predict the quality of life from a physical health perspective (QOL-PCS) for patients with primary liver cancer in Korea?”

summary of the instrument results by demographic characteristics, duration of the HCC illness in years was the only demographic factor which was significantly correlated with the study variables including QOL-PCS. Thus, duration of the HCC illness in years was entered into the first step of the regression as a control variable. Then, in the next independent dialogue box, predictor variables were entered as well as the interaction term in order to examine a potential moderator. Table 10 displays the unstandardized regression coefficients (B), the standardized errors of B (SEB), and the standardized regression coefficients (of the predictor variables. As summarized in Table 10, in the final regression equation, the predictor variables (depressive symptoms, spiritual well-

2 being) significantly predicted the QOL-PCS (R adj=.37, F(3,91)=14.64, p<.05) when controlling for duration of the HCC illness. Therefore, the final regression model accounts for 37% of the explained variance in terms of QOL-PCS when controlling for duration of the HCC illness.

A summary of regression coefficients is presented in Table 10 which indicates that spiritual well-being was the most significantly contributed predictor to the regression equation, while the depressive symptoms made a very small contribution to the final regression equation which was not statistically significant. In addition, the existence of a possible moderator variable was also tested by examining the interaction term between depressive symptoms and spiritual well-being (CES-D*SWBS). However, the interaction term between depressive symptoms and spiritual well-being was not statistically significant (t=-0.28, p=.779), indicating that the spiritual well-being did not moderate the relationship between depressive symptoms and QOL-PCS.

Table 10 Research Question #2a: Regression Analyses Summary when Controlling Duration of the HCC Illness (N=96)

Variable B SEB  t Sig Step 1 Duration of the HCC illness -1.88 .45 -.40 -4.19 .000* Step 2 Duration of the HCC illness 1.09 2.96 .23 .37 .714 CES-D Scale .32 .82 .46 .39 .698 Spiritual Well-Being Scale .65 .19 1.05 3.50 .001* Interaction Term -.00 .01 -.17 -.28 .779 Note: Dependent variable: SF-12v2 PCS (SF-12v2 Physical Component Summary) 2 * R adj=.37; p<.05

Research Question #2b

The second sub-question of the original research question 2 is: “To what extent do depressive symptoms and spiritual well-being predict the quality of life from a broad mental health perspective (QOL-MCS) for patients with primary liver cancer in Korea?”

A hierarchical regression analysis was performed to examine the extent to which these predictor variables (depressive symptoms, spiritual well-being) in this research question predicted the QOL-MCS in primary liver cancer patients. In the dependent dialogue box, QOL-MCS was entered as an outcome variable. As described in the summary of the instrument results by demographic characteristics, duration of the HCC illness in years was the only demographic factor which was significantly correlated with the study variables including QOL-MCS. Thus, duration of the HCC illness in years was entered into the first step of the regression as a control variable. Then, in the next independent dialogue box, predictor variables were entered as well as the interaction term in order to examine a potential moderator. Table 11 displays the unstandardized regression coefficients (B), the standardized errors of B (SEB), and the standardized regression coefficients (of the predictor variables. As summarized in Table 11, in the

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final regression equation, the predictor variables (depressive symptoms, spiritual well-

2 being) significantly predicted the QOL-MCS (R adj=.33, F(3,91)=12.51, p<.05) when controlling for duration of the HCC illness. Therefore, the final regression model accounts for 33% of the explained variance in terms of QOL-MCS when controlling for duration of the HCC illness.

A summary of regression coefficients is presented in Table 11: the standardized regression coefficient (of depressive symptoms seemed to be the greatest contributor to the regression equation. However, the contribution made by depressive symptoms did not show a strong statistical significance (t=-1.87, p=.065) due to the existence of a moderator. On the other hand, spiritual well-being as the second largest contributor made a significant contribution to the final model. As described in Table 11, the interaction term (CES-D*SWBS) between depressive symptoms and spiritual well-being was statistically significant in terms of QOL-MCS (t=3.17, p<.05). Therefore, the spiritual well-being moderated the relationship between depressive symptoms and QOL-MCS.

Table 11 Research Question #2b: Regression Analyses Summary when Controlling Duration of the HCC Illness (N=96)

Variable B SEB  t Sig Step 1 Duration of the HCC illness -2.35 .40 -.51 -5.81 .000* Step 2 Duration of the HCC illness 1.99 2.93 .44 .68 .499 CES-D Scale -1.52 .81 -2.25 -1.87 .065 Spiritual Well-Being Scale .39 .19 .65 2.11 .037* Interaction Term .04 .01 2.00 3.17 .002* Note: Dependent variable: SF-12v2 MCS (SF-12v2 Mental Component Summary) 2 * R adj=.33; p<.05

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Research Question #3

The third research question is: “What is a patient’s lived experience of living with primary liver cancer in Korea?“ A total of 40 patients out of the 96 participants completed the in-depth interviews; the response rate was 100%. In order to answer this research question, it was important to understand the experience of and close personal relationships among depressive symptoms, spiritual well-being, and quality of life. To achieve these ends, four open-ended questions were designed to guide the in-depth interviews (see Appendix A):

1. Please explain your experiences with regard to any changes in your “Chi” since

being diagnosed with primary liver cancer.

2. Please describe any changes experienced in your status of inner peace and

harmony since being diagnosed with primary liver cancer.

3. Please describe the most difficult experience you have had since living with

primary liver cancer.

4. Please explain anything else you would like to share about your experiences as

related to cancer treatments (such as chemotherapy, radiation therapy, or surgery,

etc.).

The qualitative data were analyzed and both negative and positive themes emerged.

These themes were categorized according to: depressive symptom-related themes, spiritual distress-related themes, other negative themes, and positive themes (see

Appendix H).

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Negative Themes

Depressive symptom-related themes. All participants (n=40) expressed depressive symptom-related themes and the most commonly occurring theme in this category was exhaustion due to the illness. In order of common occurrence, the themes related to depressive symptoms were categorized as follows: exhaustion (n=32), sadness (n=27), anger (n=20), nervousness (n=19), helplessness (n=17), ambivalence (n=17), hopelessness (n=16), irritability (n=16), frustration (n=14), feelings of being neglected

(n=10), guilty feelings (n=9), loss of interest (n=9), confusion (n=6), loss of appetite due to the illness (n=5), worthlessness (n=5), denial (n=5), suicidal thoughts (n=4), problems remembering details (n=4), problems making decisions (n=2), loneliness (n=2), feeling of being humiliated (n=1), feeling of being ignored (n=1), insomnia (n=1), and problems concentrating (n=1).

Spiritual distress-related themes. Of the 40 participants, 38 patients reported spiritual distress-related themes. The most commonly occurring theme was fear. In order of common occurrence, the themes related to spiritual distress were categorized as follows: fear (n=21), anguish (n=16), emptiness (n=12), negative Karma (n=11), punishment from

God (n=11), unfairness (n=9), purposelessness (n=7), unresolved forgiveness (n=7), feelings of being abandoned by God (n=5), loss of connectedness to God (n=5), loss of connectedness to someone or something (n=4), concerns (n=4), bargaining with God

(n=4), feelings of being abandoned by someone (n=1), feeling betrayed by God (n=1), feeling betrayed by someone (n=1), and loss of trust in God (n=1).

Other negative themes. Of the 40 participants, 38 patients reported other negative themes. There were other negative themes reported which were not classified as

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depressive symptom-related themes or spiritual distress-related themes. The most commonly reported theme was regret (n=31) followed by themes of stigma (n=25), bodily pain (n=8), weakness (n=3), embarrassment (n=1), and irony (n=1).

Positive Themes

There were also positive themes identified during the in-depth interviews.

Interestingly, all participants (n=40) also reported positive themes. The most commonly occurring positive theme was acceptance. In order of common occurrence, the themes related to spirituality were categorized as follows: acceptance (n=37), connectedness to someone or something (n=33), life satisfaction (n=25), meaningfulness (n=14), transcendence (n=13), life lessons (n=12), connectedness to God (n=11), love (n=9), appreciation of someone (n=8), faith in God (n=7), appreciation of God (n=5), dignity

(n=5), prayers for someone (n=5), reincarnation (n=5), hope (n=4), forgiveness (n=4), positive Karma (n=3), recollecting good memories (n=3), relief (n=3), and suggestions for care team (n=1).

Summary

This chapter provided statistical descriptions of the research sample and the study variables including depressive symptoms, spiritual well-being, quality of life, and content analysis. Quantitative data were analyzed to test the research model by examining predictors (depressive symptoms, spiritual well-being) and by testing relationships among the study variables.

In research question 1, there were significant negative correlations: between depressive symptoms and spiritual well-being; between depressive symptoms and QOL-

PCS; between depressive symptoms and QOL-MCS. There were significant positive

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correlations: between spiritual well-being and QOL-PCS; between spiritual well-being and QOL-MCS.

In research question 2, using hierarchical regression analyses, two predictor variables

(depressive symptoms, spiritual well-being) significantly predicted overall quality of life: in order to predict QOL-PCS in the regression model, spiritual well-being was the strongest and statistically significant contributor; in order to predict QOL-MCS in the regression equation, depressive symptoms made the largest contribution but not a statistically significant contributor due to the existence of the significant interaction effect between depressive symptoms and spiritual well-being. Therefore, spiritual well-being moderated the relationship between depressive symptoms and QOL-MCS. Attention will be turned to these results for clinical applicability in order to develop spiritual intervention programs focused on facilitating patients’ spiritual well-being and awareness of themselves and of the meaning attached to life.

In research question 3, qualitative data were analyzed using a phenomenological approach to understand the experience of living with liver cancer and to identify potential targets for future nursing interventions. As a result of the qualitative data analysis, in the negative theme category, 24 of the depressive symptom-related themes (n=40), 17 of the spiritual distress-related themes (n=38), and 6 of the other negative themes (n=38) were identified. In the positive theme category, 20 themes (n=40) were classified. In the content analysis, all patients reported mostly negative themes (see Appendix H).

However, the patients who reported negative themes also articulated positive themes.

Based on the content analyses, the patients who showed critical spiritual distress or serious depressive symptoms and who needed immediate medical attention were referred

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to their doctors for further assessment or consultation. Findings from the qualitative analyses were important in capturing more detailed insight into the research models noted in the quantitative analyses and in identifying areas of needed intervention.

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CHAPTER 5

Discussion

The purpose of this chapter is to discuss the major findings of this study in relation to the conceptual framework and interpretation of results. Major findings are then compared to previous research. Limitations of the study are discussed and recommendations for future research as well as implications for clinical practice are presented.

A mixed-method design was used to explore associations among depressive symptoms, spiritual well-being, and quality of life in primary liver cancer patients in

Korea. Additionally, content analyses with qualitative data were performed. Qualitative interviews of 40 patients were analyzed to explore the experience of living with primary liver cancer and to identify potential targets for nursing intervention.

Utilizing the two predictors (depressive symptoms and spiritual well-being) on QOL-

PCS in primary liver cancer patients, the hierarchical regression model revealed that spiritual well-being was statistically significant and the greatest predictor of QOL-PCS when controlling duration of the HCC illness. When controlling duration of the HCC illness, the second greatest predictor of QOL-PCS was depressive symptoms but the contribution made by depressive symptoms was not statistically significant. The final regression model was statistically significant, explaining 37% of the variance in terms of

QOL-PCS (p<.05).

Using the same predictors on QOL-MCS, the hierarchical regression model revealed that the greatest predictor of QOL-MCS was depressive symptoms but the contribution made by depressive symptoms did not show a powerful statistical significance due to the existence of the interaction effect between depressive symptoms and spiritual well-being.

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Consequently, although spiritual well-being was the second largest contributor to the final regression model, the contribution made by spiritual well-being was statistically significant. Thus, in the final regression model, spiritual well-being made a small but statistically significant contribution. Therefore, spiritual well-being served as a significant moderator between depressive symptoms and QOL-MCS. The overall regression model was statistically significant, explaining 33% of the variance in terms of

QOL-MCS (p<.05).

As outlined in chapter 1 and summarized in chapter 2, most of the current research studies using Fitzpatrick’s Model focused on an exploration of the elements of spiritual well-being or life satisfaction; for example, studies targeting nurse practitioners, adolescents, or cancer patients see if there were similarities or differences in the populations (Tomey & Alligood, 1998).

There seems to be some overlap between depressive symptoms, spiritual well-being, and quality of life domains (Bekelman, et al., 2009). Since there has been very little empirical investigation among the mental health domain, the spiritual domain, and the quality of life domain in primary liver cancer patients, this study aimed to provide an additional understanding of how these three domains may be potentially linked to one another. It is also postulated that the mental health domain and the quality of life domain may interact or be linked in some way to the spiritual domain. Thus, a primary purpose of this study was to explore the relationships among depressive symptoms, spiritual well- being, and quality of life. Using the CES-D, the SWBS, and the SF12v2, the investigator examined and sought to understand more fully which variables most significantly contributed to the quality of life in primary liver cancer patients. Furthermore, the Life

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Perspective Rhythm Model (1983) was examined for its applicability to primary liver cancer patients in Korea. Additionally, this study provided the foundation for future intervention studies designed to increase the quality of life in cancer patients, specifically exploring the influence of spirituality on the quality of life and further examining the link between the mental health domain and the spiritual domain. With these goals in mind, it was the investigator’s design to increase the understanding of how depressive symptoms, spiritual well-being, and overall quality of life were connected among these three important domains.

Sample Characteristics

The final sample included 96 patients for quantitative and 40 for qualitative data analyses. There were no refusals to investigate their depressive symptoms, spiritual well- being, and quality of life. However, only 40 patients participated in completing the in- depth interviews. Not all the participants who finished the quantitative data collection were available to proceed to the in-depth interviews because of the high mortality rate and rapid turnover of their admission/discharge status. In addition, the average length of hospital stay was about 5~7 days. After the quantitative data collection, by the time the researcher contacted the patients again, many of them were either deceased or transferred to the intensive care unit because of their aggravated hepatic coma. The care team did not want the researcher to contact the patients during the intensive care unit admission. The physical and mental deterioration or loss of contact was anticipated.

It was unclear how much significant information about their illness and experiences living with liver cancer was addressed through the quantitative data collection, and it is unknown if the deceased or the transferred patients experienced more or less significant

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themes than those interviewed. However, according to the qualitative responses from the study, being diagnosed and living with liver cancer certainly contributed to depressive symptoms and spiritual distress. It is also possible that patients who did not have the opportunity to participate in the study may have struggled to a greater degree with psychological or spiritual distress.

Although 96 patients were willing to participate in the study, 56 (58.3%) patients were unable to complete the in-depth interviews: 41 males and 15 females. Although the results of the study reported that gender did not affect depressive symptoms, spiritual well-being, or quality of life, the researcher was unable to explore more extensively the lived experience of the patients who did not participate. It may be that men were less willing to talk about their feelings and were more influenced by their cultural background or discipline than by being exhausted.

The study participants were mostly males (74%, n=71), middle-aged, with high school or less education, and low socioeconomic status (79.2%, n=76). Most of the patients resided in or close to metropolitan areas. Interestingly, some of the patients had a history of alcohol use, all patients were smokers or ex-smokers, and half of the patients were laborers who had multiple responsibilities for their family members. All patients had a prior history of hepatitis or being a hepatitis carrier without the delta agent. These findings are consistent with other studies in the literature (Michielson, Francque, & Van

Dongen, 2005; Michielson & Ho, 2011; Reddy & Ukomadu, 2003; Seeff & Hoofnagle,

2006).

High depressive symptoms, spiritual distress and low quality of life were found in the patients who had a shorter duration of the illness. The duration of HCC illness may

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have been associated with struggling with family members, financial burdens, or heavy responsibilities as a heads of households. The results may also have been related to the fact that, for many middle-aged Korean men, this may have been the first life-threatening experience from which they were unable to recover. Although the patients recognized that they had a life-limiting, incurable illness, it was extremely hard for them to express their emotional pain or spiritual distress. Considering their cultural context, almost all participants expressed that verbalizing pain and spiritual struggles are not recommended behavior for Korean men. During the in-depth interviews, many patients reported that they did not know what to do to face their reality because they had never experienced anything like this before. Moreover, most of the participants also reported that they experienced difficulties and challenges in understanding their estimated timeframe or prognoses as well as their individually unique experiences living with liver cancer. What made the patients extremely anxious was that the symptoms and the progress of the liver cancer they were experiencing were not held in common with many other patients.

As mentioned previously, the sample was mostly composed of males (74.0%, n=71).

This was consistent with the population at the liver cancer clinics. According to the

National Cancer Center of South Korea (2008), primary liver cancer is a leading cause of death in middle-aged Korean men. Likewise, the majority of the participants were between the ages of 46~55 (32.3%, n=31). What was surprising was that 85.4% (n=82) of the total sample had earned a high school diploma or had less than a high school education although there were no significant differences in the outcomes among the various educational credentials earned. Most of the patients (82.5%, n=33) who participated in the qualitative part of the study were also high school graduates or had

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some high school education. Regardless of the credentials earned, during the in-depth interviews all participants verbalized that they had access to technology including internet and that it was not difficult to find information regarding the causes of their present illness, treatments, procedures, or side effects.

Testing the Study Model

The study model conceptualized in Chapter 1 (Figure 1) was guided by the work of

Fitzpatrick (1983) on human rhythmic patterns for populations experiencing crisis.

During the in-depth interviews, many patients described their experiences of living with liver cancer as a life-threatening crisis or a cruel fate given by God. As highlighted in the previous chapters, Fitzpatrick’s Life Perspective Rhythm Model is multidimensional and includes the physical, psychological, social and spiritual domains. Despite the high incidence/mortality rate of the disease, research has not been conducted to develop conceptual frameworks for investigating quality of life that is specific to primary liver cancer. More importantly, in dying patients who have suffered from chronically critically ill malignant disease with loss of mental or physical functioning, it is extremely important to strengthen the positive features of their remaining capabilities rather than to focus on the negative aspects of what has been lost (Thomas & Retsas, 1999). Although the conceptual framework was not confirmed, the findings from quantitative and qualitative data present supportive evidence that depressive symptoms and spiritual well-being are associated with overall quality of life in terms of both physical and mental health perspectives.

Fitzpatrick views individuals as open systems, a unified whole in continuous mutual interaction with the environment. As many patients expressed through the qualitative data,

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they experienced loss of energy (Chi), loss of appetite, or increased irritability due to the unpleasant stimulation from the hospital facility or from the health care team. The examples of stressors or negative stimuli described by the patients included the uncomfortable hospital bed, the annoying sound of a choir singing in the hospital lobby at

Christmas, the high density of dry air, the strong smell of the hand lotion or perfume that the care team used, or the noise or crying from other patients’ rooms. These findings support Fitzpatrick’s premise that human beings and environments are open systems, continuously exchanging energy with each other.

Patients who attended hospice or liver cancer education programs were not always satisfied either with the presentation or with the instructor’s attitude. The patients asserted that they wanted to be treated like unique individuals and not as part of a cancer patients’ group. This is consistent with the conceptual underpinning of Fitzpatrick’s model that one of the major assumptions is that human beings are integral and unified wholes, more than and different from the sum of their parts.

Most of the participants indicated that they had a religious preference of either

Buddhism or of a Christian affiliation. Although there was no significant difference in the study outcomes in terms of religious preference, most of the participants believed that their connectedness to God or a Higher Being would certainly help them find a better place after death. They also believed that death was a part of the natural sequence of the life process, evolving beyond this limited space-time frame. Patients often compared their dying experiences to moving their physical address from the current world into the next world. In addition, the majority of the participants had a strong faith in reincarnation or resurrection after death. These findings are in accordance with one of Fitzpatrick’s

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principles: dynamic rhythmicities exist in the aging or dying process. Thus, health can be enhanced by focusing on the spiritual dimension even if the patients’ physical health is deteriorating. Therefore, these closely linked four domains (person-environment-health- nursing) explain what spirituality entails within human existence and how spirituality is a critical dimension of physical, psychological, social, and spiritual well-being.

As participants were getting close to the terminal stage of liver cancer, most of them wanted to reflect on their lives especially regarding the meaningfulness attached to life.

Patients who had a longer duration of the HCC illness showed heightened awareness of the meaning of life. The meaning attached to life is considered to be a positive indicator of human rhythmic patterns throughout the cancer experience. In Fitzpatrick’s model, the human rhythmic patterns are conceptualized as the indices of health status. Consequently, the nonrepeating, rhythmic patterns on a continuum from crisis to heightened awareness of the meaning of life impact overall quality of life. As shown through the components of the qualitative interviews, patients who expressed life satisfaction or strong connectedness to God, verbalized less psychological or spiritual pain. The qualitative findings through the interviews support the principles of the study model. Based on the study findings, the non-repeating rhythmicities through the mutual and continuous interactions between human and environmental fields were drawn to demonstrate the dynamic rhythmicities existing in liver cancer patients who were experiencing the death and dying process (see Appendix I).

As many patients mentioned, understanding the cultural context is crucial in interpreting the qualitative data. However, the Life Perspective Rhythm Model has no explicit description of cultural diversity. In the context of the interview, most of the

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Buddhist patients strongly postulated that death was not the end and that life and death were not mutually exclusive dimensions. Thus, the physical, psychological, and spiritual domains of quality of life require experts in each area with effective interdisciplinary processes for the coordination of care. This study may contribute to the elucidation of the applicable role of Fitzpatrick’s spiritual variables to individuals who are experiencing a life crisis such as a chronically critically ill malignant disease, and, in particular in this research study, for the first time, primary liver cancer in Korean patients. Consequently, a better understanding of the findings concerning the relationships and the predictors to enhance quality of life are beneficial to liver cancer patients as well as to their family members. Patients’ depressive symptoms and spiritual well-being scores highlight the need for emotional as well as informational support from the health care team. In the same way, the findings are also important to the development of nursing interventions specifically targeted to address patients’ unique concerns. Based on the study findings, the Life Perspective Rhythm Model was redrawn in order to incorporate cultural context which generates multiple patterns of health (see Appendix J). Thus, new theoretical insights and creative activities prompted by this study may contribute to filling gaps in theory development as well as expanding empirical knowledge about the concept of quality of life for primary liver cancer patients.

Depressive Symptoms

More current studies have been conducted emphasizing the importance of providing emotional or psychological support research in palliative care settings than in liver cancer clinics. As a consequence, depressive symptoms in liver cancer patients have received less attention than invasive clinical trials or cytological study. In addition, the current

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studies of depression in cancer patients have focused on breast cancer populations (Fann, et al., 2008). The need to investigate how depressive symptoms impact a person’s overall health status is a critical need. As a majority of the participants expressed, the depressive symptoms they were experiencing not only caused emotional distress but also affected their physical and spiritual health domains. The qualitative findings and statements reflect that the biochemical disorder in depressed patients closely link to hypercortisol secretion which ultimately leads to negative manifestations both physically and emotionally. These findings are consistent with those of other investigations (Calarco & Krone, 1991;

Germino, et al., 1995). The phenomenological studies of cancer patients (Carter, 1989;

Doumit, et al., 2010) are also consistent with these findings.

The many depressive symptom-related themes found were also consistent with other current studies in the literature (Carter, 1993; Doumit, et al., 2010; Rhodewalt & Zone,

1989). As many patients stated during the in-depth interviews, patients’ perceptions of ambivalence, guilty feelings, and feelings of hopelessness, helplessness, or worthlessness were directly causing a depressed affect. Likewise, in findings related to cultural context, especially in Asian cultures, inner peace or harmony was more highly valued rather than assertive expression. The same findings were also presented in the current literature targeting Japanese liver cancer patients (Akechi, et al., 2006).

Although there were no significant differences in depressive symptom scores in terms of the cancer stage, gender, age, or socio-economic status, all participants not only highlighted the heightened importance of open expression, but also the need to seek intervention programs in order to ease emotional pain. The hospitals used for data collection were established by Christian-affiliated foundations. Thus, hospice or the

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patients’ education programs provided were not always in tune with the beliefs of

Buddhist patients. During the qualitative interviews, many of the respondents expressed emotional/psychological distress as part of the culture-bound syndromes or religious pain rooted in guilt. Thus, in most patients, the expression of the depressive symptoms was closely connected with the culture-bound syndromes which were also related to their religious contexts. Therefore, examining the relationship between depressive symptoms and spiritual well-being yielded a significant correlation. Likewise, many patients expressed that they were utilizing support resources by finding spiritual connections to nature or to a Higher Being in order to cope with their life-threatening crisis. Although some studies concluded that spirituality served as a mediating factor to reduce depressive symptomatology (Gall, et al., 2005; Simoni & Ortiz, 2003), in the quantitative data analysis, no mediator or moderator was detected. However, through the qualitative interview, many respondents stated that they utilized their spiritual beliefs to make sense of their terrible stressors by explaining the situation as the will of God. As can be categorized by the participants’ statements in the phenomenological study, there was a strong message that linked the depressive symptoms and the spiritual domain. During the interview, most participants used the words “spirituality, spiritual well-being, or religious well-being” interchangeably. In summary, in many contexts of the in-depth interviews, expressions of depressive symptoms and emotional distress connoted spiritual distress as well. Thus, with the current literature providing the groundwork, the findings of this study add a further imperative to additional investigations that need to be conducted.

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Spiritual Well-being

Most studies regarding primary liver cancer have focused on pharmacological or radiological interventions, clinical procedures, or minimizing side effects (Garcea, Lloyd,

Aylott, Maddern, & Berry, 2003; Helton, 2004; Tao & Yang, 2012). The importance of spiritual well-being focused on patients’ quality of life has been investigated in a variety of research settings including chronically critically ill patients, terminally ill patients, or cancer patients (Beery, Baas, Fowler, & Allen, 2002; Bekelman, et al., 2009; Gioiella, et al., 1998; O'Neil & Kenny, 1998; Shaffer, 1991; Thoresen, 1999; Tuck, et al., 2001).

There was a positive correlation between spiritual well-being and quality of life. In addition, spiritual well-being was the most significant contributing predictor to quality of life from a physical health perspective. Additionally, many of the respondents who focused on their spiritual distress postulated negative themes which may diminish quality of life. More expression of negative spiritual coping methods such as anger at God was related to poorer quality of life. These findings in the literature are consistent with studies of quality of life at the end of life (Hills, Paice, Cameron, & Shott, 2005; Laubmeier, et al., 2004; Prince-Paul, 2008; Tarakeshwar, et al., 2006).

Most respondents acknowledged that their physical, emotional, social functioning, or roles had changed due to their illness. Accordingly, spiritual well-being, as the major predictor, was associated with less emotional distress and better quality of life regardless of perceived life threat. Interestingly, many patients who were experiencing impending death expressed that their connectedness to God or to a Higher Being, to hope, or to internal peace was greater than at the beginning of being diagnosed with liver cancer.

Spiritual well-being, particularly a sense of meaning, inner peace, and connectedness,

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was associated with an ability of the patients to continue to enjoy life despite high levels of depressive symptoms or emotional distress. Although the participants were manifesting extreme levels of fatigue, loss of energy, or pain, respondents often expressed that their hope about life after death or reincarnation was strengthening their diminishing physical health. This is consistent with the results found in the literature

(Krupski, et al., 2006; Nelson, et al., 2002; O'Mahony, et al., 2005; Whitford, Olver, &

Peterson, 2008; Zavala, Maliski, Kwan, Fink, & Litwin, 2009) that the spiritual well- being domain significantly contributes to the quality of life in cancer patients.

The findings through the interpretation of the qualitative data in the present study reported that the emerging importance of the spiritual needs of liver cancer patients was strongly postulated. During the in-depth interviews, 6 patients among 40 claimed themselves as atheists saying that they did not believe in God. However, there was an urgent need detected to seek spiritual supports through content analysis. Although the participants did not have any religious preference, all of them expressed undying hope about reunion in paradise with their family members who were already deceased. They believed that their hope of reincarnation, their hope of resurrection, and their hope of reunion with their loved ones would help them strengthen positive energy (Chi).

Regardless of the respondents’ religious preference, many patients verbalized their belief in the existence of Karma. As a consequence of Karma, some patients actually wanted to be reborn as a certain type of object (flower, cloud, rain, or pebble etc.) that are said to feel no pain. These results demonstrate that the spiritual well-being domain has relevance to overall quality of life even when patients are facing death. Therefore, the most significant finding of this study is the fact that an individual’s health can be enhanced by

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facilitating the spiritual domain. In striking contrast to these results, most studies and theoretical models have hypothesized that a person’s health or quality of life reaches zero at the end of life (Korn, 1993). Thus, the findings of this study are consistent with the results in the literature which state that the contribution of the spiritual domain to overall quality of life is significant (Cotton, et al., 1999; Salsman, Yost, West, & Cella, 2011;

Tarakeshwar, et al., 2006; Whitford, et al., 2008). During the in-depth interviews, respondents often identified spiritual well-being by the use of the words Karma, self- transcendence, Chi, or inner peace. This is the first study exploring the relationships and qualitative context for liver cancer patients. For further examination regarding these relationships, cultural components must be included in order to examine whether the spiritual and cultural domains are empirically distinct or conceptually linked to quality of life. Prior to interpretation of the qualitative data, careful translation and concept analyses of the content coupled with the knowledge of culture and religious background need to be validated.

Quality of Life

Most studies in the literature addressing quality of life in cancer patients have been focused on quantitative measurements (Ling, Lui, & So, 2012). Therefore, results from the investigations contain limited perspectives to confirm the influence of qualitative themes on the overall quality of life. Respondents’ expressions encompassed a multidimensional construct including negative and positive themes which were related to the description of quality of life. There is no single definition or instrument that is able to cover every aspect of health-related quality of life. For instance, the SF-12v2 used for this study has 8 subscales measuring physical functioning, role physical, bodily pain, general

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health, vitality, social functioning, role emotional, and mental health. However, in this study, the SF-12v2 failed to measure the commonly-emerged themes (regret, stigma, embarrassment, forgiveness, etc.) which were often described as key elements of quality of life. In the studies of cancer pain and quality of life, qualitative data were incorporated in order to interpret the results more comprehensively (Berterö, 2008; Ferrell, et al.,

1995; Prince-Paul, 2008). In this study, the score measuring depressive symptoms was the most influential predictor for quality of life from a broad mental health perspective.

According to the findings, depressive symptoms had a strong, negative relationship with quality of life. The spiritual well-being had a strong, positive relationship with quality of life. These findings are supported in current cancer studies in the literature (Kandasamy,

Chaturvedi, & Desai, 2011; Prince-Paul, 2008; Tarakeshwar, et al., 2006; Whitford, et al.,

2008).

Most respondents were afraid of revealing the nature of their illness. Many patients felt they had to decline socializing or visiting friends. The commonly emerged theme was that of stigma which affected respondents’ vitality, social functioning and, often, mental health as well, indicating that persons with end stage liver cancer were experiencing extreme deterioration in most parts of the quality of life domain. However, the SF-12v2 was unable to capture the complex phenomena expressed during the in-depth interviews since the instrument gave heavier weight to the physical domains. Limitations of quantitative instruments in this regard were also found in other cancer studies (Thomé,

Dykes, & Hallberg, 2004).

During the in-depth interview, most of the patients verbalized that there were a number of positive feelings experienced in the dying process as well as negative feelings.

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Living with liver cancer and facing impending death actually allowed respondents to reflect on the meaning of life. There was no significantly different quality of life in terms of the patient’s stage of cancer. The quality of life construct was highly individualized for each patient. As reported in the literature, positive psychological aspects have a strong impact on overall quality of life (Andrykowski, et al., 1996; Bloch, et al., 2007; Compas

& Luecken, 2002). However, there is a lack of empirical evidence regarding how positive psychological aspects and expression and their potential effects impact the quality of life domain.

As many patients expressed, dying with respectful dignity was as important as living with good quality of life as a liver cancer patient. Much remains to be investigated about this complex domain underlying unique, non-repeatable rhythmicities (death and dying).

Often respondents stated that higher levels of positive emotion, life satisfaction, hope, meaningfulness attached to life, or appreciation, help them enhance their overall quality of life. The findings from this study provide initial evidence regarding liver cancer research using both quantitative and qualitative data. Patients who expressed appreciation in their daily life were more likely to express having helped someone with a personal problem or having offered emotional support to another relative regarding the hassles or conditions of social comparison. That is consistent with the studies in the literature

(Emmons & McCullough, 2004). In order to investigate changes over time focusing on these study variables, a longitudinal study design with multiple time points needs to be utilized. Lastly, in order to obtain the additional information that patients felt important and to capture significant elements or concepts, utilizing journals or field notes reported by patients, needs to be considered.

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Clinical Implications

The liver cancer care professionals must rely on the interdisciplinary team to respond to the multidimensional needs of the patients who are facing a life-threatening crisis. It is doubtful that the liver cancer patients in this study were only seeking concrete information. Since most of the patients have access to television and computer, they are very aware of general information about liver cancer, treatments, procedures, and side effects. It may be that the patients were searching for deeper support to better cope with the situation and to relieve their anxiety and spiritual distress. In addition, the liver cancer patients may have been seeking reassurance that there was still some meaningfulness attached to their lives. Even though all accredited liver cancer clinics in Korea must comply with regulations and guidelines from the Ministry of Health and Welfare, the daily care protocols may differ. Naturally, nurses have more of an opportunity to lay the groundwork for assessing emotional and spiritual needs of patients as they spend more and more time with both patients and family members. Liver cancer patients’ feelings of emotional and spiritual distress were often verbalized during the interviews. However, in the current environment, the average length of stay in liver cancer clinics is 5~7 days.

Thus, nurses and other health care providers must offer support efficiently and swiftly in terms of cost-effectiveness. If nurses can more efficiently prioritize their necessary tasks, they will be better able to target the important emotional and spiritual needs of their patients in the limited time available. These findings and suggestions may increase opportunities to establish feasible goals encompassing the physical, psychological, social, spiritual, and existential aspects of care. More practically, in order to prevent nausea or irritability, these findings help to improve cancer care guidelines or protocols at cancer

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centers by alerting care team members to not wear perfume or use any strongly scented shampoo or lotion.

Finally, the findings of this study indicate that liver cancer patients were experiencing depressive symptoms and spiritual distress to a greater or lesser extent.

Most of the patients scored above the cutpoint in the CES-D Scale and indicated at least more than one theme of spiritual distress. During the in-depth interviews, patients indicated that they wanted to help and support other liver cancer patients who were going through the same life-threatening crisis. Many of the patients actually had to travel far to receive cancer treatments. Within the very limited time, patients did not have enough opportunity to get hands-on emotional and spiritual support even from the health care team. In earlier findings regarding the relationship between psychological and spiritual needs, improving patients’ psychological and spiritual well-being may well have a positive impact on patients’ quality of life. In other words, providing liver cancer patients with opportunities for greater emotional and spiritual support along with clinical support may well improve their overall quality of life.

Hospital admission procedures for the liver cancer clinic visits are conducted with the primary nurse, the cancer coordinator, the physicians, surgeons, and often the social worker. According to the results from the in-depth interviews conducted during this study, the nurse is the primary health team member most likely to have direct interaction with patients and family members. Nurses are the ones most intimately involved in cancer care and have the opportunity to make a difference in patients’ quality of life until their final days. Nurses play a key role in assessing and assisting patients to achieve an overall improved quality of life. Earlier assessment of emotional and spiritual needs is likely to

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decrease patients’ distress and ultimately improve their holistic wellness. Therefore, providing education programs for nurses and thereby improving their knowledge regarding patients’ emotional and spiritual needs may impact health care outcomes.

Teaching liver cancer patients and family members about the disease process, treatments, procedures, and side effects using face to face sessions or computer assisted instruction may be feasible ways to help patients gain confidence as they struggle to understand the cancer experience. The findings of this study may also support the continued need for an interdisciplinary approach to cancer care as well as help create a set of clinical practice guidelines focused on spiritual well-being and quality of life. Most importantly, liver cancer researchers must begin to use and build the evidence base for practice.

The findings of this study, including patients’ suggestions, are very helpful in developing a feasible and more applicable nursing intervention for both liver cancer patients and family members. Considering the limited timeframe and budget, and in order to provide emotional and spiritual supports, using computer technology should also be considered in patient education programs. The findings from this study have the potential to serve as additional empirical evidence for subsequent primary liver cancer research.

Recommendations for Future Research

Using mixed methods design is a new phenomenon in this area because most of the previous studies focused on molecular levels or on the quantitative approach. More qualitative research is needed to understand the experience of living with liver cancer in order to further define the concept. Deeper, qualitative investigations need to occur in order to explore the concept of stigma or spiritual distress and its potential inclusion or exclusion in the quality of life construct.

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This is the first study exploring the lived experiences and predictors of quality of life outcomes in the primary liver cancer population. It is important to understand how psychological and spiritual aspects impact liver cancer patients’ well-being. Further research examining the relationship between psychological and spiritual well-being in patients and their ultimate health status are needed.

The depressive symptoms, spiritual well-being, quality of life, and experience living with liver cancer need to be examined over time since a cross-sectional study was unable to capture the peaks and valleys of the experiences. A longitudinal design or triangulation method may explore more insightful information regarding the benefits and burdens associated with the cancer journey. Very little is known about how quality of life in persons who are dying or facing impending death changes regarding both the terminal stage of liver cancer in patients as well as the effect of this situation on their family members. This requires longitudinal investigation to understand this phenomenon and to measure the potential effect of the psychological and spiritual aspects in this process. A larger sample size is, likewise, needed to assess relationships among the study variables at multiple time-points. A multiple time point would involve enrolling the participants at their admission to the clinic and follow-up on them throughout their treatments and decision making phases.

No intervention studies were found in the current literature. Findings from this study may assist in developing the nursing interventions described earlier in this chapter.

Comparing the psychological and spiritual well-being of the patients who are randomized to the intervention group with those receiving routine care would help identify the effectiveness of such an intervention. Future intervention studies that build upon the

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findings from this study need to test for the effects of nursing interventions to enhance the quality of life for liver cancer patients.

In order to incorporate a cultural specific context into the experience of living with liver cancer, research instruments need to be designed. Currently most of the instruments measuring psychological or spiritual aspects have been tested in general populations or with other types of cancer patients only. For instance, the CES-D Scale items are specific to the tasks of measuring depressive symptomatology in the general population. The limitation of the CES-D scale is that it does not cover all of the depressive symptoms that liver cancer patients are typically experiencing: ambivalence, anger, nervousness, helplessness, guilty feelings, confusion, denial, or suicidal thoughts.

Regarding measuring patients’ subjective response to their quality of life, it is not known whether patients who were diagnosed more recently differ from those who were diagnosed more than a year ago. Further examination of this phenomenon may allow researchers to provide additional support in developing a conceptual framework investigating why the physical component may take on less importance and the spiritual domain take on greater importance as the patient comes closer to death. Since this research model was not repeatedly confirmed, revisions or validation of the model is required. Only selected significant contributing factors or demographic characteristics should be included as predictors of outcomes. The duration of the HCC illness are known to influence depressive symptoms, spiritual well-being, and quality of life. Thus, the duration should continue to be included in the future model. As for the additional predictors that were supported in the initial model, retesting is required in order to revise the research model. In order to develop a research model centered on quality of life and

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spiritual well-being, subsequent testing and concept analyses must take place since the construct of quality of life is multidimensional, dynamic, and not static.

Based on the qualitative data reported in this study, the additional themes emerged

(ambivalence, stigma, pain, weakness, guilt, embarrassment, irony) may help to explain the outcome variables. The concepts of ambivalence, stigma, and guilt may be important predictors but have not been studied in this population. Unfortunately, the CES-D, the

SWBS, and the SF-12v2 did not seem to measure either the benefit or the burden in this sample. There was no mediator or moderator detected. However, relationships between the predictor variables and the dependent variable should also be retested in diverse cultural contexts and according to religious preference. It is possible that a new instrument specific to the primary liver cancer experience may eventually be developed and validated. Thus, valid and reliable measurements must be developed to measure these concepts. Prior to attempting to develop new instruments, conceptual clarification and concept analysis regarding the quality of life in primary liver cancer patients, focusing on specific content domain and the potential link between depressive symptoms and spiritual well-being should be investigated.

Limitations

Potential limitations of this study include both the sampling method and the characteristics of the target population. Therefore, the findings need to be carefully interpreted. All recruited participants were convenience samples who agreed to participate in the study. For practical reasons, this sample was drawn from patients with primary liver cancer registered in two university hospitals in Korea. Thus, this study was limited to those patients registered in those hospitals’ liver cancer clinics. In addition, the

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results of this study may also represent the most cooperative patients, those who were both willing to participate and cognitively intact. The characteristics of the samples largely represent the patients who were aware of the terminal nature of their illness and who were also receiving the appropriate level of liver cancer treatments. These potential limitations do not mean that the study findings were determined in order to address issues related to other types of cancer populations. The data collection sites were two university hospitals in Korea. Thus, the findings from the regression models are not applicable to populations with different ethnic backgrounds or from different geographical location.

In this study, all participants were actively participating in treatments or education programs given by the care team. Depressive symptoms, spiritual distress, or pain in patients not receiving advanced cancer treatments may be a stronger contributing factor to overall quality of life than the patients who are admitted on a regular basis. The average age of this population was 60.89 (±10.03) with a range of 34~89. However, only two patients were under 40 and two patients were over 80. Having more samples from these age groups may provide additional information regarding differences in relationships, life satisfaction, roles, or responsibilities in the various age groups. The majority of the patients were Korean males (74.0%, n=71); religious preferences were mostly Christian affiliation (52.0%, n=50) or Buddhist (36.5%, n=35). Thus, the sample lacked cultural or gender diversity.

In the summarized results of the qualitative data, only 40 patients out of the 96 completed an in-depth interview. Consequently, the categorized themes based on the 40 interviews may represent a highly motivated cohort without major functional limitations.

This could be a potential limitation of this study since the sample may not include as

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much experience of living with liver cancer among persons with lower motivation. Such data might have offered more insight into the impact on the overall quality of life of these persons.

One of the most important potential limitations of this study may have been the instrument used to measure quality of life (SF-12v2). The SF-12v2 was selected for this study because of its reliability and validity. However, the SF-12v2 only provided two summary scores of PCS and MCS. There was no single total score to interpret the overall quality of life.

The study results may not be generalizable to other populations having different types of cancer or cultural backgrounds. Further research is required especially for patients who live in diverse cultural environments or who are considered vulnerable populations. Another limitation regarding the qualitative data analyses was the fact that the English translation of the content may not have been able to capture the slight discrepancies in terms of cultural expressions or emotional statements. This study was not longitudinal. Since the circumstances surrounding living with liver cancer may change over time. Because the data for this study were collected at only one time point, the findings are not generalizable to the whole population of liver cancer patients.

Summary

For many reasons, this study of patients with primary liver cancer is an important contribution to the chronically critically ill population and, likewise, to future cancer research. Living with liver cancer and facing death are unique experiences that impact all dimensions of a person’s life. Furthermore, as a consequence of experiencing a life- threatening crisis, inevitably all aspects of one’s quality of life are affected. There is not a

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universally accepted definition of quality of life in this new and growing area of primary liver cancer research. Likewise, concerns related to the psychological and spiritual domains have been less acknowledged in the liver cancer population. Therefore, there is no common taxonomy to articulate these realities. This is the first research study to explore this multidimensional construct that includes physical, psychological, and spiritual domains. Correlations among the study variables presented a statistical significance. In addition, the overall hierarchical regression models showed a statistical significance in predicting both QOL-PCS and QOL-MCS. Accordingly, findings suggest that patients who report less depressed or higher spiritual well-being experience better quality of life than the patients who report highly depressed or lower spiritual well-being.

Quality of life seems to take on heightened importance for the patients facing impending death; therefore, the need to assess the relationship among the physical, psychological and spiritual domains is imperative.

The purpose of the current research was to examine the correlations among two subscales of the SF-12v2 (PCS and MCS), the CES-D, and the Spiritual Well-Being

Scale (SWBS) and to investigate the extent to which the depressive symptoms and spiritual well-being scales predicted the quality of life in primary liver cancer patients. In response to research question 1, this study demonstrated that the CES-D Scale had the strongest correlation with the SF-12v2 MCS. The second strongest correlation was between the SWBS and the SF-12v2 PCS. In research question 2, the SWBS was the greatest predictor of the SF-12v2 PCS. The CES-D Scale was the greatest predictor of the

SF-12v2 MCS. In research question 3, through the qualitative data analyses, themes were classified into four categories (depressive symptom-related themes, spiritual distress-

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related themes, other negative themes, and positive themes). Utilizing study instruments in this research was also beneficial in order to gain a better understanding and also empirical confirmation of the CES-D Scale, SWBS and the SF-12v2 (PCS and MCS).

A significant contribution of the findings of this study, based on both quantitative and qualitative data, is the impetus given to future research that will guide nursing practice, in both clinical settings and community populations. The knowledge gained through this research has laid the groundwork for future studies to identify key elements in both the study of liver cancer as well as the support of patients and families members through the development of comprehensive intervention strategies. Therefore, this initial investigation broadens the understanding of the multi-dimensional aspects within the context of the terminally ill cancer population. Based on the empirical evidence, potential targets for nursing interventions can be identified for future research as well as contributions made to more comprehensive concept development, theoretical frameworks, definitions, and development of measurement tools. These contributions suggest many directions for future research.

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Appendix A

Demographic Data Collection Form & Background Questionnaire

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Date ___/ _ /____ ID ______

DEMOGRAPHIC DATA COLLECTION FORM & BACKGROUND QUESTIONNAIRE Please answer these questions about yourself. This information will assist us in comparing and interpreting various characteristics of study participants. Please fill in the blanks or “✔ ” mark your response.

I. Demographic Data Collection Form

Variable Description Data Code

ID Study ID number ______ID

Date of enrollment As is ______/______/_____ Date_Enrollment Type of Cancer Diagnosis including current ______diagnoses Ca_Type Age Age upon enrollment ____ Age Gender 1 = Male _____ 2 = Female Gender

Marital Status 1 = Married ______2 = Not married Marital

Employment Status 1 = Employed ______2 = Not employed Employment (No occupation, retired, or disabled) 3 = Other--Please specify______

Religious Preference 1 = Catholic ______2 = Protestant Religion 3 = Buddhist 4 = None 5 = Other--Please specify______

General Health Status In general, would you say your ______health is: General_HealthStatus 1 = Very poor 2 = Poor 3 = Fair 4 = Good 5 = Very good

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Variable Description Data Code

Credentials Earned 1 = Less than high school ______2 = High school diploma Credential or GED (including any college) 3 = College (must have Bachelor) 4 = Graduate (Master, Doctorate, JD, MD)

Annual Household 1 = Very low ($ 10,000 or less) ____ Income 2 = Low ($ 10,001 to $ 29,999) SES 3 = Middle ($ 30,000 to $ 49,999) 4 = High ($ 50,000 or greater)

Date of a Primary As is Liver Cancer ______/______/_____ Diagnosis Date_Dx

Duration of illness since the diagnosis ______Dx_Length(****)

Date of Hospital As is Admission ______/______/_____ Date_Admission

Cancer Stage 1 = I 2 = II ______3 = III Ca_Stage 4 = IV

Cancer Classification 1 = Localized 2 = Metastatic advanced ______Ca_Class

History of Prior 1 = No Cancer(s) 2 = Yes--Please specify______Ca_Hx

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Variable Description Data Code

Family History of 1 = No ______Cancer(s) 2 = Yes--Please specify______FmCa_Hx

Alcohol use 1 = No ______2 = Yes Alcohol

History of cigarettes, 1=Non- smoker cigars, or tobacco 2=Ex-smoker ______smoking 3=Current smoker Smoking_Hx

Are you currently, or have you in the past 3 months, received any of the following treatments for your cancer?  Chemotherapy 1 = No ____ 2 = Yes CTx

 Radiation therapy 1 = No ____ 2 = Yes RTx

 Surgery 1 = No ______2 = Yes Surgery

 Other 1 = No ______2 = TACE Other_Tx 3 = TACE + RFA

II. Background questions regarding the lived experience of liver cancer

1. Please explain your experiences with regard to any changes in your “Qi” since being diagnosed with primary liver cancer.

2. Please describe any changes experienced in your status of inner peace and harmony since being diagnosed with primary liver cancer.

3. Please describe the most difficult experience you have had since living with primary liver cancer.

4. Please explain anything else you would like to share about your experiences as related to cancer treatments (such as chemotherapy, radiation therapy, or surgery etc.).

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날짜 ___/ _ /____ 연구번호 ______

일반적 특성과 건강 관련 특성 측정 도구 다음 사항은 귀하의 일반적 특성과 건강 관련 특성을 조사하는 내용입니다. 아래 보기의 해당란에 직접 기입하거나 “√” 표시해 주십시오.

I. 일반적 특성과 건강 관련 특성

질문 보기 데이터 코드

연구 번호 연구 대상자 분류 번호: ______ID 자료 수집 날짜 년 월 일 ______/______/_____

진단명 최근 진단명 포함 ______Dx 나이 세 ( 년생) ______AGE 성별 1 = 남 ______2 = 여 GENDER 결혼 상태 1 = 기혼 ______2 = 미혼 MARITAL 직업 1 = 직업이 있음 ______2 = 퇴직 EMPLOYMENT 3 = 장애

4 = 무직

기타 5 = : ______종교 1 = 가톨릭 ______2 = 개신교 RELIGION 3 = 불교

4 = 종교 없음

기타 5 = : ______전반적 건강 상태 최근 귀하의 전반적인 건강 상태에 ______대해 어떻게 느끼십니까? HEALTH 1 = 아주 나쁘다

2 = 나쁜 편이다

보통이다 3 = 4 = 좋은 편이다 5 = 매우 좋다

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질문 보기 데이터 코드

교육 정도 1 = 고졸 이하 ______2 = 고졸, 전문대 졸업 CRED 3 = 4 년제 대학교 졸업

4 = 대학원 졸업

연 평균 수입 1 = 매우 낮음 ($ 10,000 이하) ______2 = 낮음 ($ 10,001 ~ $ 29,999) SES 3 = 중간 ($ 30,000 ~ $ 49,999)

4 = 높음 ($ 50,000 또는 그 이상)

간암 진단 받은 년 월 일 날짜 ______/______/_____

간암 진단 받은 후 투병 기간 ______입원일 년 월 일 ______/______/_____

간암 단계 1 = 1 기 2 = 2 기 ______3 = 3 기 CA_STAGE

4 = 4 기

간암의 특성 분류 1 = 국소화되어 있음 2 = 진행(전이)된 상태 ______CA_CHARACTER

암으로 진단 받은 1 = 없음 과거력 2 = 있음: ______CA_Hx

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질문 보기 데이터 코드

암에 대한 가족력 1 = 없음 2 = 있음: ______FMCA_Hx

간암 진단 후, 최근 3 개월 동안 어떤 종류의 항암 치료를 받으셨습니까?

 화학(약물) 요법 1 = 아니오 2 = 예 ______CTx

 방사선 요법 1 = 아니오 2 = 예 ______RTx

 수술 1 = 아니오 2 = 예 ______SURGERY

 기타 1 = 아니오 2 = 화학 색전술 ______3 = 화학 색전술 + 고주파 열치료 OTHER_Tx

II. 간암 환자의 현상학적 경험에 관한 개방형 질문

1. 간암으로 진단 받은 이후, 경험하신 기력(氣力)의 변화에 대해 말씀해 주십시오.

2. 간암으로 진단 받은 이후, 귀하의 내적 평화(평안)와 삶의 조화가 어떻게 변화되었는지 말씀해 주십시오.

3. 간암으로 진단 받은 후, 생활하시면서 가장 힘들었던 경험은 어떤 것들이 있었는지 말씀해 주십시오.

4. 그 외에 간암 치료 받으시면서 느낀 귀하의 경험 (화학 요법, 방사선 요법, 수술 등) 중 좀 더 나누고 싶으신 것들이 있으면 말씀해 주십시오.

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Appendix B

The Center for Epidemiologic Studies Depression Scale (CES-D)

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Date ___/ _ /____ ID ______

The Center for Epidemiologic Studies Depression Scale (CES-D)

Please circle the number of each statement which best describes how often you have felt or behaved in the following ways during the past week (including today). 0=Rarely or none of the time (<1 day) 1= Some or a little of the time (1-2 days) 2= Occasionally or a moderate amount of the time (3-4 days) 3= Most or all of the time (5-7 days) During the past week: 0 1 2 3 1) I was bothered by things that usually don’t bother me

2) I did not feel like eating; my appetite was poor 3) I felt that I could not shake off the blues even with help from my family and friends 4) I felt that I was just as good as other people

5) I had trouble keeping my mind on what I was doing

6) I felt depressed

7) I felt that everything I did was an effort

8) I felt hopeful about the future

9) I thought my life had been a failure

10) I felt fearful

11) My sleep was restless

12) I was happy

13) I talked less than usual

14) I felt lonely

15) People were unfriendly

16) I enjoyed life

17) I had crying spells

18) I felt sad

19) I felt that people disliked me

20) I could not get “going”

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날짜 ___/ _ /____ 연구번호 ______

우울 측정 도구

아래 항목들은 우리가 때때로 경험하는 문제들입니다. 지난 1 주일 동안 (오늘을 포함하여) 귀하께서 얼마나 자주 이런 식으로 느꼈는지, 그 경험 정도를 가장 잘 나타낸 것을 선택하여 번호에 “O”표시를 해 주십시오. 0= 매우 드물게 (1 일 이하) 1= 약간 (1~2 일) 2= 상당히 (3~4 일) 3= 대부분 (5~7 일)

항 목 0 1 2 3

1) 평소에는 성가시지 않았던 일이 성가시게 느껴졌다.

2) 별로 먹고 싶지 않았다; 입 맛이 없었다.

3) 가족, 친구가 도와 주어도 기분이 울적했다.

4) 다른 사람 만큼 기분이 좋았다.

5) 하고 있는 일에 집중 하기가 어려웠다.

6) 우울했다.

7) 하는 일마다 힘들게 느껴졌다.

8) 미래에 대해 희망적으로 느껴졌다.

9) 내 인생은 실패작이라고 생각했다.

10) 무서움을 느꼈다.

11) 잠을 설쳤다.

12) 행복했다.

13) 평소보다 말을 적게 했다.

14) 외로움을 느꼈다.

15) 사람들이 불친절했다.

16) 인생이 즐거웠다.

17) 울음을 터뜨린 적이 있었다.

18) 슬픔을 느꼈다.

19) 사람들이 나를 싫어 한다고 느꼈다.

20) 일을 제대로 진행시킬 수 없었다.

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Appendix C

The Spiritual Well-being Scale (SWBS)

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Date ___/ _ /____ ID ______The Spiritual Well-Being Scale (SWBS)

For each of the following statements, please circle the choice that best indicates the extent of your agreement or disagreement as the question reflects your personal experience.

1= Strongly agree 4= Disagree 2= Moderately agree 5= Moderately disagree 3= Agree 6= Strongly disagree

1 2 3 4 5 6 1) I don’t find much satisfaction in private prayer with God. 2) I don’t know who I am, where I came from, or where I’m going. 3) I believe that God loves me and cares about me. 4) I feel that life is a positive experience. 5) I believe that God is impersonal and not interested in my daily situations. 6) I feel unsettled about my future. 7) I have a personally meaningful relationship with

God. 8) I feel very fulfilled and satisfied with life. 9) I don’t get much personal strength and support from my God. 10) I feel a sense of well-being about the direction my life is headed in. 11) I believe that God is concerned about my problems. 12) I don’t enjoy much about life. 13) I don’t have a personally satisfying relationship with God. 14) I feel good about my future. 15) My relationship with God helps me not to feel lonely. 16) I feel that life is full of conflict and unhappiness. 17) I feel most fulfilled when I’m in close communion with God. 18) Life doesn’t have much meaning. 19) My relation with God contributes to my sense of well-being. 20) I believe there is some real purpose for my life.

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날짜 ___/ _ /____ 연구번호 ______영적 안녕 측정 도구

다음 각 항목은 현재 귀하의 개인적인 경험을 진술한 내용입니다. 매 항목마다 현재 귀하가 경험하고 있는 그 경험 정도를 가장 잘 나타낸 것을 선택하여 번호에 “O”표시를 해 주십시오.

1= 매우 그렇다 4= 그렇지 않다 2= 대체로 그렇다 5= 대체로 그렇지 않다 3= 그렇다 6= 매우 그렇지 않다

6 5 4 3 2 1 1) 나는 개인적으로 절대자(신)에게 기도하는 것에 큰

만족을 얻지 못한다 2) 나는 내가 누구인지, 어디서 왔는지, 혹은 어디로

가고 있는지 모른다 3) 나는 절대자(신)가 나를 사랑하고 돌보아 주신다는

것을 믿는다 4) 나는 삶이 긍정적인 경험이라고 믿는다 5) 나는 절대자(신)가 인간적이지도 않고, 나의 일상적

상태에도 관심이 없다고 믿는다 6) 나는 나의 장래가 불안정하다고 느낀다 7) 나는 절대자(신)와 개인적으로 의미있는 관계를

가지고 있다 8) 나는 나의 삶에 매우 충족하고 만족스럽게 느낀다 9) 나는 개인적으로 절대자(신)로부터 힘과 지지를

많이 얻지 못한다 10) 나는 나의 삶이 가고 있는 방향에 대해 안녕감을 느낀다 11) 나는 절대자(신)가 나의 문제에 대해 관심을 갖고

있다고 믿는다 12) 나는 삶이 별로 즐겁지 않다 13) 나는 개인적으로 절대자(신)와 만족스러운 관계를

갖고 있지 않다 14) 나는 나의 장래를 좋게 본다

15) 나와 절대자(신)와의 관계는 나를 외롭지 않게 해 준다

16) 나는 삶이 갈등과 불행으로 가득 차 있다고 느낀다 17) 나는 내가 절대자(신)와 함께 할 때 가장 충족함을

느낀다 18) 삶이 별로 의미가 없다 19) 나와 절대자(신)와의 관계는 나에게 안녕감을 갖게

해준다 20) 나는 나의 삶에 어떤 진정한 목적이 있다고 믿는다

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Appendix D

The 12-item Medical Outcomes Study Short Form Health Survey Version 2.0 (SF-12v2)

146

Date ___/ _ /____ ID ______

SF-12v2

For each of the following questions, please circle or mark the best possible answer.

1. In general, would you say your health is: 1 2 3 4 5 Excellent Very Good Good Fair Poor

2. The following questions are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much

1 2 3 Yes, Yes, No, limited limited not limited a lot a little at all a. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf b. Climbing several flights of stairs

3. During the past 4 weeks, how much of the time have you had any of the following problems with your work of other regular daily activities as a result of your physical health?

1 2 3 4 5 All Most Some A little None of of of of of the time the time the time the time the time a. Accomplished less than you would like b. Were limited in the kind of work or other activities

4. During the past 4 weeks, how much of the time have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

1 2 3 4 5 All Most Some A little None of of of of of the time the time the time the time the time a. Accomplished less than you would like b. Were limited in the kind of work or other activities

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5. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? 1 2 3 4 5 Not at all A little bit Moderately Quite a bit Extremely

6. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past 4 weeks

1 2 3 4 5 All Most Some A little None of of of of of the time the time the time the time the time a. Have you felt calm and peaceful? b. Did you have a lot of energy? c. Have you felt downhearted and depressed?

7. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting friends, relatives, etc.)?

1 2 3 4 5 All of the time Most of the time Some of the time A little of the time None of the time

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날짜 ___/ _ /____ 연구번호 ______

삶의 질 측정 도구

본 설문지는 귀하의 건강과 관련하여 일상적인 활동을 얼마나 잘 수행하고 있는지 묻는 내용입니다. 귀하의 경험 정도를가장 잘 나타낸 것을 선택하여 각 항목마다 하나의 답에 “O”표시를 해 주십시오.

1. 전반적으로 볼 때 당신의 건강 상태는 어떻습니까? 1 2 3 4 5 최상이다 매우 좋다 좋다 그저 그렇다 나쁘다

2. 다음의 항목들은 일상 생활의 활동에 관한 것입니다. 이런 활동을 하는데 어려움이 있습니까? 만일 그렇다면 어느 정도 입니까?

1 2 3 어려움이 어려움이 어려움이 많이 있다 약간 있다 전혀 없다 a. 중간 정도의 활동, 예를 들어 책상 나르기, 청소기로 집안 청소하기, 볼링, 골프 등

b. 건물의 여러 층 계단을 걸어 오르기

3. 지난 4 주 동안 신체 건강상의 문제로 인하여 직무(일) 또는 일상적인 매일의 활동에서 아래의 어려움을 겪은 적이 있었습니까?

1 2 3 4 5 극도로 상당히 중간 정도 약간 전혀 많이 많이 있었다 있었다 없었다 있었다 있었다 a. 원하는 만큼 일을 성취하지 못했다 b. 일 또는 다른 활동에 얼마간 제약을 받았다

4. 지난 4 주 동안 마음의 불편함 혹은 감정적인 문제(예를 들어 우울이나 불안 등)로 인하여 당신의 일이나 일상적인 활동에서 아래의 어려움을 겪은 적이 있습니까?

149

5. 지난 4 주 동안 통증이 당신의 일상적인 일(외부 일과 집안 일을 포함하여)에 어느 정도 지장을 주었습니까? 1 2 3 4 5 전혀 주지 않았다 약간 주었다 중간 정도 주었다 상당히 많이 주었다 극도로 많이 주었다

6. 다음 질문들은지난 4 주 동안 어떻게 느끼고, 어떤 일이 있었는지에 관한 것입니다. 질문에 대하여 당신의 느낌에 가장 근접한 답에 표시하여 주십시오. 지난 4 주 동안 당신은?

1 2 3 4 5 항상 거의 상당한 아주 전혀 그랬다 대부분 시간 가끔 그렇지 그랬다 그랬다 그랬다 않았다 a. 평온하고 평화로웠다 b. 원기가 충만하였다 c. 낙담하고 우울하였다

7. 지난 4 주 동안 신체 건강상의 문제 또는 감정적인 문제가 당신의 사회생활(예를 들어, 친구나 친척을 방문하는 것)에 얼마 동안 어려움을 주었습니까? 1 2 3 4 5 모든 시간 대부분 시간 상당한 시간 약간 시간 없었다

150

Appendix E

IRB Approvals

151

Yeonghee Shin, RN., PhD Chief Director of Nursing Department Keimyung University Dongsan Medical Center

216 Dalseong-ro, Jung-gu Daegu, 700-712 South Korea +82-53-250-8100 Phone +82-53-250-6614 Fax [email protected]

March 15, 2010

Eunsuk Lee, RN, PhDc Frances Payne Bolton School of Nursing Case Western Reserve University 10900 Euclid Avenue Cleveland, OH 44106-4904 USA

Dear Ms. Eunsuk Lee:

I am pleased to write a letter of approval for your research study entitled, “Relationships among Depressive Symptoms, Spiritual Well-Being, and Quality of Life in Primary Liver Cancer Patients in Korea.”

I understand that you are currently a PhD candidate at Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio, in the United States. You have described your proposed research study to me. By this letter, I want you to know that the IRB of Dongsan Medical Center has approved your research proposal to recruit and interview cancer patients who have been diagnosed with primary liver cancer, and I am willing to assist you in your studies as needed.

Keimyung University Dongsan Medical Center recognizes the urgent need to identify factors that contribute to enhancing cancer nursing practices and therefore will be pleased to be your collaborative institution in Korea.

Sincerely,

Yeonghee Shin, RN, PhD Chief Director of Nursing Department Keimyung University Dongsan Medical Center

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Seung Kew Yoon, MD, PhD Director of WHO Collaboration Center on Viral Hepatitis, Korea Department of Internal Medicine, College of Medicine The Catholic University of Korea Seoul St.Mary’s Hospital

505 Banpo-dong, Seocho-gu Seoul, Republic of Korea (Zip Code: 137-040) Office Phone) +82-2-2258-2077 Cell Phone) +82-11-9754-5911 Fax) +82-82-2-3481-4025 Email) [email protected]

March 25, 2010

Eunsuk Lee, RN., PhD Candidate Frances Payne Bolton School of Nursing Case Western Reserve University 10900 Euclid Avenue Cleveland, OH 44106, USA

Dear Ms. Lee:

We are writing to let you know that the IRB of St. Mary’s Hospital has approved your request to support your research study, “Relationships Among Depressive Symptoms, Spiritual Well-Being, and Quality of Life in Primary Liver Cancer Patients in Korea”, which is your doctoral dissertation at Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio, USA.

The Catholic University of Korea Seoul St. Mary’s Hospital values this area of cancer care and treatment, especially quality of life issues, so we are very excited about the possibilities of your study on primary liver cancer patients. As such, we are pleased to write a letter of approval for your research study. We will be happy to work with you and facilitate your access to liver cancer patients in the units.

We look forward to collaborating with you on this important initiative.

Sincerely,

Seung Kew Yoon, MD, PhD Director of WHO Collaboration Center on Viral Hepatitis, Korea The Catholic University of Korea Seoul St. Mary’s Hospital

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Appendix F

Informed Consent

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Appendix G

Letter of Introduction

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Address: 10900 Euclid Avenue Cleveland, Ohio 44106 Phone (USA): +1 216 368 2147 Cell phone (Korea): 011 537 3821 Email: [email protected]

Letter of Introduction / / 2010

Dear Participant,

My name is Eunsuk Lee and I am a PhD student at Case Western Reserve University at the Bolton School of Nursing in Cleveland, Ohio, USA. I would like to invite you to participate as I conduct a study on “The Relationships among Depressive Symptoms, Spiritual Well-being, and Quality of Life in Primary Liver Cancer Patients in Korea”. The purpose of this research study is to acquire a more holistic understanding of liver cancer patients and also to explore the relationships between study variables. Due to the recent rapid increase in the liver cancer incidence rate, many more patients are experiencing serious physical, emotional, and spiritual distress; this distress ultimately affects their quality of life immensely. Thus, the researcher plans to examine the relationships between the most commonly experienced problems in liver cancer patients, including depressive symptoms, status of spiritual well-being and quality of life. Your honest and sincere responses will be immensely valuable in helping us to acquire a better understanding of liver cancer patients. Many people have different understandings of spiritual well-being and especially of the concept of God (or the Divine Creator). However, it should also be noted that this research does not exclude participants based on their religious preferences. I would be most appreciative if you do not omit any questions on the topic of spiritual well-being, even if you do not have a religious affiliation.

The interview will be conducted using Korean versions of questionnaires on depressive symptoms, spiritual well-being, quality of life, and your lived experience. The types of questionnaires to be used are the CES-D (to measure depressive symptoms), the Spiritual Well-being Scale (to measure spiritual well-being), and the SF-12 (to measure quality of life). In addition, a researcher-developed demographic data collection form (to investigate your general characteristics with regard to health related data) will also be used. At the end of the questionnaire, your answers exploring ‘lived experiences in primary liver cancer’ will be recorded and later typed verbatim for data analysis purpose. Your participation in this study will take approximately 5~10 minutes to complete. A review of your medical records will be conducted to obtain more accurate and comprehensive information, such as your past medical history, present illness, treatment type/progress, cancer stages, cancer characteristics, or family history etc.

Research participation will be initiated by signing the informed consent that indicates your voluntary participation. By participating in this research study, there will be no direct benefits to you nor will it affect any of your medical treatments. Even if you have already consented to participate in this research study, you may withdraw at any time, without any resulting prejudice, disadvantage, or loss of benefits in the current research institution. Your data will be used with only your first initial and study ID number; thus your identity will not be revealed in any way. All information will be kept confidential and will only be released for the sole purpose of research. If you have any questions, you may contact me by phone (011 537 3821) or email ([email protected]). Thank you for your time and cooperation for this research study.

Sincerely,

Eunsuk Lee, PhDc, RN 191

주소: 10900 Euclid Avenue Cleveland, Ohio 44106 전화(미국): +1 216 368 2147 핸드폰(한국): 011 537 3821 이메일: [email protected] 부탁의 말씀

안녕하십니까? 저는 미국 Case Western Reserve University 대학원 박사과정에 재학 중인 이은숙입니다. 저는 “한국 원발성 간암 환자의 우울 증상, 영적 안녕, 삶의 질에 대한 연구”라는 주제로 연구를 진행하고자 합니다. 본 연구의 목적은 전인적인 측면에서 간암 환자에 대한 이해를 돕고 그 상관성을 파악하고자 만들어진 것입니다. 최근 간암 환자의 급속한 증가로 인해 많은 분들이 투병 과정에서 신체적, 심리적, 영적인 문제가 함께 발생되어 삶의 질에 크게 영향을 받고 있습니다. 이에 본 연구자는 간암 투병 중인 환자분들이 흔히 경험하는 우울 증상, 영적 안녕, 삶의 질에 대해 연구하고자 합니다. 귀하께서 주시는 솔직하고 성의 있는 응답은 환자들을 좀 더 이해하는 데 도움이 되는 귀중한 자료가 될 것입니다. 대부분의 사람들은 영적 안녕, 특히 절대자(신)에 대하여 다양한 의견을 가지고 있습니다. 그러나 이 연구는 특정 종교를 가진 대상자에 국한 되는 것이 아니므로 만일 귀하께서 절대자(신)를 믿지 않으신다 할지라도 귀하의 의견은 소중하오니 빠진 항목 없이 꼭 응답해 주시기 바랍니다.

본 연구는 연구자와 귀하 간의 설문지를 사용한 인터뷰로 이루어집니다. 사용되는 설문지는 우울 증상 측정을 위해 한국형 CES-D 설문지, 영적 안녕 측정을 위해 한국형 영적 안녕 도구 설문지, 삶의 질 측정을 위해 한국형 SF-12 설문지, 귀의 일반적 특성과 건강 관련 특성을 파악하기 위해 본 연구자에 의해 개발된 설문지가 사용됩니다. ‘진단 받은 후 현재까지 투병 과정에서 느끼는 경험’에 대한 응답은 인터뷰 내용을 녹음하여 추후에 구술 내용 그대로 타이핑하여 자료 분석에 사용됩니다. 설문지 작성에 걸리는 시간은 대략 5~10 분 정도입니다. 귀하의 과거 병력, 현재 병력, 치료 종류와 진행 과정, 질병의 진행 단계, 질병의 특성, 가족력 등에 대한 좀 더 정확한 자료 수집을 위해 귀하의 병원 의무 기록이 열람될 수 있습니다.

본 연구에의 참여는 귀하께서 피험자 동의서에 서명함으로써 시작되며 이는 귀하의 자발적 참여 의사에 의해 결정됩니다. 본 연구의 참여 동의서에 서명함으로써, 귀하께서 반드시 이득을 본다는 보장은 없으며 향후 시행되는 귀하의 의학적 치료에 어떠한 영향도 미치지 않습니다. 만약 귀하께서 참여를 결정하신 경우에도 어떠한 편견, 불리함 또는 본 기관에서의 이득 손실 없이 언제라도 참여를 중단하실 수 있습니다. 본 설문지 응답 사항은 귀하의 영문이름 첫글자와 연구 참여 번호로 처리되어 무기명으로 비밀이 보장되며 오직 연구 목적으로만 사용할 것을 약속드립니다. 연구과 관련된 질문 사항이 있으실 경우 전화 (011 537 3821) 또는 이메일 ([email protected])로 저에게 연락 주시기 바랍니다. 본 연구에 협조하여 주셔서 감사합니다.

2010 년 월 일

연구자 이은숙 드림 (연구자 서명: )

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Appendix H

Quotes from In-depth Interviews

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Depressive Symptom-related Themes

Exhaustion due to the Illness (n=32)

You never know until you walk in someone else’s shoes. You never know how things will develop or get worse. For me, it’s very difficult to deal with lethargic feelings as though I have tons of sandbags on my shoulders. I know that I have only 24 hours a day to use. Some days are good enough to accomplish what I was supposed to do but some other days are not so good to carry on even simple things. (Tae)

I used to do everything very actively like housework and outside work. I suppose it’s like that for any mother. But, since I was diagnosed with liver cancer, sometimes I can see the kitchen floor with crumbs or dust. I have to admit that I do not have the same energy that I used to have. Most of the time, I feel dog-tired so I don’t want to know the world around me except laying myself down on the sleeping mat. In the morning, it becomes harder and harder to get up early. When the weather is really, really bad, I feel like a dampened cotton blanket soaked with a heavy rain storm. (Hoh)

At work, my nickname was iron horse, strong and stubborn as a bull. I used to lift heavy rice bags with one hand. The rice bag package weighed about 80 kilograms which would be about one man, one grown-up man’s body weight. I had no problem with carrying two rice packs at once. Tiredness was not a word in my dictionary. Now, I have to face the reality that I need lots of hours… hours to get re-energized before going out somewhere. Recently, I realized that I was getting weaker and weaker as I received chemotherapy. Considering, the nature of this disease, 3 years’ struggle against cancer made me burn out. I feel devalued and beaten up. I don’t have leftover energy. It seemed like I was totally drained of every single piece of my energy. (Kap)

During the series of chemotherapy, I had become thinner. When the cancer treatment was over, I thought I had passed the critical point. My body weight didn’t show much change but I felt like being stretched out. Anyhow, I don’t feel the same Chi as I used to. Whenever I was disappointed with the poor progress of my treatment, many people said that… what I was experiencing would help future cancer patients… the patients who have the same cancer as I have. Some others said my experience would save their lives. But, considering my weakness, I don’t know what kind of help I could possibly be offering to someone. I hate to admit it. But my body, my soul, I am getting weaker and weaker every day. (Hak)

I was diagnosed with liver cancer about 3 years ago. I don’t know if I’ll survive to see my daughter’s wedding in spring of next year. At least, I would like to walk my daughter down the aisle. But, in reality, I have to admit that I am very fragile now and sick. Every time I was admitted to the hospital for some procedures or treatments, I felt like I was getting older rather dramatically. (Choi)

I had my own remedy to cheer me up: cleaning the house, organizing a drawer, rearranging photo albums, going to a spa and then having a chat with my friends all night. Every other month, I used to hang out with my friends to get rid of stress. They still have that meeting but I can’t afford the same level of energy as I used to have. Naturally, I became a more and more homebound patient. (Yeon)

I’m going to take a break for about a month between the big procedures. That’s for me to decide because the non-stop fighting with cancer has interfered so badly with my normal life not to mention the loss of appetite. I feel all the strength drained out of my body. I need a break. (Whan)

I have three kids. Every time I had a baby, I didn’t need to use the full maternity leave. I used to have 3 or 4 weeks recuperating period and then I went right back to my work without any difficulties. I can’t exactly remember since when… but… suddenly I was getting fragile. At first, I thought it was just… because I reached menopause. But, the feeling of tiredness has never left me. When the weather was bad, I couldn’t get up in the morning. Yesterday, I slept until late afternoon without having breakfast. I couldn’t open my eyes because of the sour feeling as if someone splashed vinegar

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in my eyes. About five o’clock in the evening, finally, I woke up and I opened the window. As I expected, it was raining. My other co-workers used to call me energizer. It is so unlike myself when I am down-hearted like this. I feel like that I am walking to death’s door every day. Whenever I feel anxious, I try to read the Bible but I can’t do that anymore because my eyes get strained and I get tired so easily. (Sook)

I have to encourage and help myself to restore my strength but I can’t fight against the aging process. That makes me frustrated. Lifting a food tray or holding chopsticks is becoming a big problem now. Recently, every cancer treatment or some tests made me so tired. I felt that everything I was going through was requiring a huge effort. The effort… I felt like… as if I was moving a big stone table without my arms and legs. My illness is causing me to fail every day and is dragging me down hour by hour. Sometimes, it’s very hard to distinguish between daydreaming and reality. I don’t think I have the energy to keep up with cancer treatments. I think I have had enough… enough to suffer from the incurable illness… enough to be humiliated by it. (Ryung)

I haven’t fully recovered yet from my recent cancer treatment. After a couple of hours talking and eating…I have to go back to my room to take a nap. I feel sorry for my guests but I can’t help it. I don’t seem to be doing well. I don’t think I can carry out or help with housework anymore. (Tark)

Every dawn about 4 o’clock, I feel that I’ve just passed a crisis. Finally, I am able to go back to sleep again. I have heard that the door to paradise closes about 4AM. It could be just coincidence but my symptoms like dizziness and vomiting become worse when the sun goes down. My strength is extremely low until the dawn comes. On the worst day, I couldn’t move my arms and legs as if some heavy rocks pressed on me. (Choo)

I don’t believe in Chi. I am not superstitious because I’m a Christian. Sometimes I had a dream that I was going on a picnic… sometimes I had a dream that I was flying over the sea like a bird. When I was a youth, I used to have a dream about flying over the mountain or over the ocean very energetically. But, in most of my dreams that I had recently, I had to take a break between mountains before flying over the ocean. The bird which was me must have been really too tired to continue flying. After I woke up, I felt the same way as the bird felt in my dream. I am exhausted. Yesterday I had to take a breath twice to go to the bathroom. And the feeling of dizziness is driving me crazy. I thought I was going to die on the way coming back to my room from the bathroom because of dizziness and nauseous feeling. Sometimes when I wake up in the evening, it is difficult to distinguish the time whether it is dawn or dusk. (Seong)

I am not quite comfortable with using the word Chi because my pastor told me Chi was a Buddhist term which was against the Christian faith. I have read many books to figure out what makes liver cancer so different from having other chronic illnesses. I didn’t want to be considered as a superstitious weak man. But I do admit that I am not feeling the same strength since the cancer diagnosis. Sometimes I feel my heart beat isn’t as strong as before. (Young)

I have had three spring seasons pass since I was diagnosed with liver cancer. I feel my strength is getting gradually weaker and weaker. Not only I am physically tired but also I am feeling like my heart is running out of battery power. When I was still in good health, I had plenty of time to recharge those batteries of body and mind. Recently I feel very down and drowsy without any reason, especially in the early morning or in the evening or when the weather is bad. (Jang)

I am tired. Sometimes, I have a hard time to open my eyes. When my condition is down, I don’t want to shave or wash my face or brush my teeth. I just don’t have much strength for that. Very often, I can’t bend my waist forward to wash my face or shampoo my hair because of the dizziness. Brushing my teeth is another big problem because it causes more nauseous feelings. (Keun)

I was very tired and moody without a specific reason so I had to quit my full-time job. I thought it was the normal aging process because I was getting close to menopause or because of my thyroid problem. I had no problem with working straight night shift for 3 days. After the night shift, on the

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way home, I used to love going to a movie or shopping or meeting friends or going on a train trip. But, now, I am barely taking care of the daily routine, nothing more than that. The cancer treatment that I received recently made my hands shaky. For some reason, during the chemotherapy, I couldn’t move my legs because of a cramp. I had breathing difficulties as well. My stomach is very upset. I can’t hold food down. (Sun)

How to live and carry on the rest of my life? For almost 3 years, I have been living with an incurable disease. Anyway, I am here and I’ve come this far, but I don’t think that I have much strength left for another 3 years. I feel that I had been running an endless marathon without paying attention to the sign board or direction. I am tired of this. I want to rest. Living with a dreadful disease and carrying on daily life to me it seems like I am living without achievable goals. I used to cook and clean and manage all the housework between 6am and 9pm. I used to be very high energy and get a lot of things done quickly before my husband came back home. I never felt it was too hard for me. Well, many things have been changed since the liver cancer diagnosis. (Ae)

During the first 3 months, it was the hardest time for me to keep going between my intensive cancer treatment and my work. I had a hard time making a good balance between the two different settings. (Jo)

No matter how many obstacles I encountered on my path, I was always able to overcome them. No matter what terrible economic crisis I had, I always bounced back to normal. Yes, I was a survivor. Yes, I was a diligent winner. Do I have the same strength to fight against cancer? I think I’ve gone too far to bring my health back. I have lost everything. I feel that my whole energy has been drained out like the most desolate garden during the winter season. (Yang)

I can’t sit still and suddenly my neck feels stiff. I experience a severe headache and heart palpitations without a cause. I feel my eyes are very dry. When I lie down, I feel like the ceiling is turning which makes me very dizzy. I feel dizzy even when I am lying down, not only when I try to stand up from a sitting position. I feel that my eyes and head are not clear as if I was walking on a very dark and misty road. (Jin)

Most men of my age, mid-40s, don’t quite think of death. I never really thought about the possibility that my chronic fatigue could be liver cancer-related. I never had some relaxing time or slow down time; it is as if I have been driving myself on the highway with maximum speed. (Kang)

My life had always been full of energy and exciting challenges until my wife left me here alone. Until my wife’s funeral, I never had flu or serious illness. I never had a near-death experience in my entire life. For some reason, since my wife died, I have become very vulnerable physically and emotionally. I knew, after my wife’s funeral, it was not over yet. Something… some bad things were looming over me. Feeling exhausted and anxious is not a new thing for me. (Lim)

I’m not going to blame anyone now since it was totally my fault getting caught by liver cancer. I didn’t usually get upset by almost any kind of shocking news. I was called a manly man in my family. But something has changed since the liver cancer diagnosis. I wouldn’t like to admit it but I am getting weaker. (Gil)

Since I was diagnosed with liver cancer, I have been trying to use separate towels and toiletries. My health has deteriorated rather dramatically because of stomach problems; the same is true because of mouth sores. I am getting weaker every day. (Jong)

My late husband was very knowledgeable about theories of Yin-Yang and Feng Shui. He studied how to improve our lives by receiving positive energy from both heaven and earth. When I am stressed, breathing in and breathing out is getting more difficult. I feel some sort of energy in my body is gradually leaking out. During the repeated liver cancer treatments, I didn’t know what I was getting into. Every time I finish a treatment or procedure, I regret the fact that I agreed to receive it without knowing the consequences not to mention the extreme fatigue. I don’t think I can get better or get

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healed. Just like accumulating old dust on the desk, I feel that an extremely small amount of negative energy has been piling up on my head. Everyday accumulated small amount of concerns and worries which never bothered me before… are nibbling at my body. I feel that I am shrinking day by day. From my brain and my heart and in my bones, I have been losing substantive amounts of positive Chi because of the cancer-fighting process and I can feel it. I can’t even handle a simple flu. I know I may be going to fail to restore my positive energy the way it used to be. I may also not be able to maintain the same level of energy and strength as time goes by. I know for sure… as time passes, the cancer treatment will become more difficult because my body may not be able to endure further aggressive treatment. My late husband didn’t like the structure of our house because of a strong negative energy he had felt. I can’t explain clearly how and what but… now I feel the same way he experienced... feeling of emptiness and dampness like a heavy cotton blanket soaked by a rain shower. (Jeong)

It has been going on for about 5 years feeling tired and uneasy. And everything in my daily life requires a great effort to carry on. I knew that something was not right in my body but I couldn’t be sure what was wrong. During 5 years of liver cancer treatments, I have been experiencing all kinds of things. That day I wasn’t feeling well and my stomach was very upset and the dizziness was dragging me down to the bottom of the earth. (Taek)

For the past 2 years of liver cancer treatment, I changed my lifestyle 180 degrees. Even until the year I had my honorable retirement ceremony, I had no clue what the cause of fatigue and diminished strength was. (Myung)

The most difficult thing about living with liver cancer is the fact that I have a difficult time falling asleep at night. And I have a difficult time waking up in the morning. The accumulated chronic fatigue and insomnia make it impossible for me to carry on my daily life. I mean… feeling tired or chronic fatigue… I have never paid attention to the warning signals that my body had been sending me. Raising three kids and caring for parents-in-law consumed my energy from head to toe. Either I was too tired to think of my health or I was too busy to think of what was wrong with me. (Noh)

My eyesight is getting worse. Without glasses, I can’t read any kind of written document or labels on bottles. I may have to get a pair of hearing aids soon. In addition, I feel uneasy about the big procedure which I am about to receive. I feel like a tiger is chasing after me and my feet are not fast enough to run away from it. I wish I had some more time to arrange my things, at least my room. But I couldn’t finish the plan. It was not because I was lazy or a procrastinator but because I was getting weaker and did not have enough strength. Recently frequent sickness due to cold, flu, and mouth sores have drained my energy… have been weakening my body and heart… producing sweat and intolerance to temperature. (Park)

I was diagnosed with liver cancer about 3 years ago. I don’t think that I can keep going like this. I don’t think that I have enough patience and energy left, not to mention the expensive cost of cancer treatment. For 3 years, I feel like that I have been driving a junk car into the scorching desert. I feel the exhausting, fighting smells as if something is burning out in my mouth. I have 3 more years to work until my retirement. I don’t know how long I can work without burning out… or, to be exact… without collapsing. About my job and my work, I don’t want to be replaced when I am still able to work. I wish I could make myself keep going and going. But, I know that’s not going to happen because of extreme fatigue. (Seon)

Chemo has weakened my strength and my mind. I believe that I didn’t have many problems before I began chemotherapy and liver cancer treatments… the problems like… upset stomach, hand tremors, double vision, losing the sense of taste, and a funny sense of smell. I feel that my mind is scrambled by an unknown cause. (Joong)

It has been over a month since I last went outside. I couldn’t go out for a walk because of extreme tiredness. In addition, this year, winter became more freezing. I forgot to water the flower pots before I came to the hospital. Have the flowers blossomed in the living room? I want to see the park where my kids and I used to play together... one last time before I die. (Kyu)

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Sadness (n=27)

The year I turned 60, I was diagnosed with liver cancer. I still clearly remember that day when my doctor told me the bad news in a flat tone. It still makes my hands shake and it makes me very sad. I was too occupied with taking care of my wife and kids in order to give them better house and higher education. My only concern... the only concern was making more money for them. That’s why I have been living like such a penny pincher. I have always dreamed of having luxurious meals or expensive cars for myself. I wish I had those when I had some extra money to buy them. It is not every day I feel good about my life: sometimes I have my moments of a crying spell…which couldn’t stop. The word ‘cancer’ makes me feel a piercing pain in my heart. (Tae)

I know that a protracted illness wears out final devotion. I have two sons who are college students. I don’t mind if they are preoccupied with other prior arrangements. My older son will be starting his mandatory military service at the end of this month. He will be gone for 3 years. I have been depending on my son very much. He is very bright. He’s already grown so tall. I am very proud of the fact that he’s mature enough to join the navy like most of his friends. My biggest concern is that... I may not be here by the time he finishes boot camp. I know it is an honorable duty for every man to serve the country but I wish he could postpone the date until I am ready to let him go. I know the experience of serving the country would be a great opportunity to expand my son’s world view. I know... I know... I know all the advantages regarding that. But, I wish he could stay with me a little bit longer while I am still... still... here... alive. At some point, I know… I have to let him go... let him fly away like a brave eagle. I am picturing my son in the white navy uniform. I am also picturing my future getting worse and worse… a deteriorating figure. Once I start thinking of my pathetic picture, it gets very, very hard to shake it off even when my son comes to the hospital every morning and sometimes stays until very late evening, reading the newspapers and watching TV with me. I don’t know where this unexpected sad feeling is coming from. (Kap)

Now I have some money to buy my favorite food but my doctor said that I shouldn’t eat pickled shrimp or salted mackerel because they contain too much salt. I have made enough money to buy a house and enough food for my family and I am very proud of that. Whenever I see food on the family table, I am happy but I also find it sad and bitter because of the fact that I shouldn’t eat certain types of food. (Hak)

When my son was a little boy, he told me that he would like to become a genius like me. Recently, I have felt very downhearted and shed tears more than usual. I know my son meant well to cheer me up but I couldn’t stop crying and I just couldn’t help it. I don’t know my future. What if something happens to my kids after I am gone? I wish I could see my son’s promotion and success. I have no doubt my son will be a great person who will help many people. So I shouldn’t be sad. I hope my son won’t be crying and won’t be giving up easily when he is having a tough moment. I just… I wish I could be with him whatever his path, giving him good advice. (Choi)

I wish I could survive 2 more years so that I could see my daughter entering college. A girl’s first year in college might be different from a boy’s. She may have so many questions: what to wear and how to put on fancy makeup and dating. I wish I could be with my daughter whatever she needs and wherever she goes. I just would like to be there. Just like the day I was there when my baby daughter took her first step. I imagine the moment… my last moment leaving this world and leaving my baby daughter behind… it just tears my heart into pieces… as if someone’s hammering down my heart with a big nail. The most serious feeling that has been bothering me is the feeling that I am alone… about the fact that I have to face death by myself… after all. No one can do that for me. It makes me very sad. (Yeon)

Watching the sunset from my rooftop sometimes makes me think a lot of things. I feel like my time is running out which makes me sad. The setting sun… it may be reflecting my diminishing Chi in my body. (Whan)

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It has been about 3 years since I was diagnosed with liver cancer. I have been trying... just desperately trying to keep myself to focus on the present moment. I don’t want to think about the uncertain future because it makes me very sad. I hear other people saying… western medicine has been trying to find a cancer cure treatment but it doesn’t seem to work out for Asians. My pillow has soaked with my unstoppable tears for many nights. (Mah)

I washed my face to cover my swollen, red eyes. I am tired of doing this… pretending that I am doing great. I know that I have to be strong and firm in my position in a time like this. I know I have to act like a strong man. But, whenever someone talks to me that I have to act like a strong man, I feel so upset. Is there anyone who doesn’t have an end? (Tark)

Well… I was diagnosed with liver cancer about 2 years ago and I survived longer than my expiration date. My wife is a lot younger than I am. Every time I come to the hospital, it breaks my heart to see her sleeping… leaning on my hospital bed. (Choo)

It seems very hard for my wife to accept the reality. My wife said to me: ʻYou must stay beside me all the time. You shouldn’t fall asleep when I am not beside you. Your eyes are open, right?’ I know why she always tried to wake me up when she entered the room. She must be afraid of losing me while I am sleeping. I wish I had more time to repay my wife…for her kindheartedness. (Seong)

I saw some of patients had visitors from their church. I saw they said prayers very loudly and cried very sadly. It was quite disturbing. I was wondering whether, if they were truly confident with what they believed, shouldn’t they feel more comfortable about death? It was very sad to watch their desperate prayers which reminded me of my impending death. (Kyung)

Lately, my husband is trying to cook a regular meal so that I can only focus on low salt diet cooking for myself. At the dinner table, I am having different foods from my family. I know they mean well. They are just trying to help my cancer treatment. But most of the time at the kitchen table, I feel awfully isolated because the regular foods that they are eating look so delicious; this gives me more food cravings. That makes me sad. (Sun)

During the daytime, I am alone in the hospital. As soon as my daughter’s wedding is over, she will be moving to other country and she will settle down across the sea. I know that I am supposed to be happy for her but it makes me sad. I feel like… I am losing her forever. (Ae)

My first fiancé who hurt me so cruelly and finally betrayed me like a piece of trash was also a so- called Christian preacher. My advisor who abused me emotionally for my entire college years… yes, she was a deaconess in her church. Most people, about whom I shall never forget their hypocrisy, were Christians, too. What a strange coincidence! How on earth did I end up here? With the terrible Christian-related memories from my very early childhood to my 30s... finally, I ended up having a liver cancer. I am leaving this world very soon with empty hands. It makes me so sad. (Hee)

Most things were New Year’s Day or Thanksgiving Day gifts from my friends or my neighbors. Do I really need to do it now? I don’t want to get rid of my precious things hastily… those things attached to my more precious memories. I wouldn’t like to give away or clean out my things too early. It makes me very sad. My doctor told me there won’t be a further aggressive cancer treatment until my blood tests return to normal. I don’t think that I could have one next time for sure. Of course, as a Christian, I am aware of the fact that I shouldn’t end my life by my own hand because it would be the most unforgivable sin. I wanted to talk to my pastor… about my struggling and problems and my unreasonable insecurity. But it didn’t go very well which made me very sad. (Hoon)

My wife accompanied me to the hospice program all the time so I couldn’t comfortably cry in front of her. My doctor and nurses told me that they could arrange a counseling program or a pastor to help me. I tried both of the options but they didn’t work for me. Where is my sadness stemming from? I don’t know. (Yang)

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When my kids are with me in the hospital room, I would at least like to protect my dignity by having a decent conversation… instead of putting my head in the toilet to vomit. It makes me miserable. (Sung)

I wish someone could be with me… someone who can listen to me and support my nervous heart gently and quietly. But my mind is still disturbed. What more can I do? I should not complain. I can’t advertise my anxious feelings to my kids, because… even the beautifully tuned melody will be boring if you reiterate the third time. No one would like to listen to the same hopeless repertoire over and over again like a broken, whining record. My wife was such a good person. After her sudden departure to the next world, I feel it has been very difficult to keep my mind focused on what I am doing… as if a piece of me is missing. It makes me very sad. (Lim)

I lost everything. Living with liver cancer is like one of the sad movie references like… the sun is no longer bright… the sky is no longer clear crisp blue. My life is a pitiful thing. What kind of chaos is this? What kind of rare combination of bad luck am I getting into from now on? I feel that someone has just wiped out my whole future calendar without pre-warning. On the ripped-out future calendar, I may or may not be allowed to live. About the current cancer treatment that I am receiving, I feel fine when my wife is massaging my back and shoulders and arms and legs… but I feel pain again when I’m alone. It’s probably because of the chemo drugs or progression of cancer into another part of my body. I don’t know the cause of the physical pain that I have. It could be an emotionally-related thing. I become restless when I worry about my kids and my wife and the fact that I have to leave them behind. I know my time in this world is slowly running out. I do not know how long this cancer treatment can go on without complications. I don’t expect a miracle. I honestly don’t. Sadly, this is the reality. I know I can only stay in this world… at most… 7 or 8 months more. When I am still strong enough to endure a long distance trip, I would like to go on a fishing trip with my kids. My doctor said that it would be better to wait until the winter flu season is over. I am not so sure about the fact that I will see the next spring again. That makes me profoundly sad. (Gil)

I don’t smoke now… but I was a heavy smoker. Recently, my doctor said there is more cancer found in another part of my body like the lung… and other places. I don’t want to let my kids know about this… aggravated cancer to the terminal stage. It would make everyone terribly sad. (Jong)

I don’t think that I have ever had a pretty face. And I don’t think that I have ever had an ugly face but I thought my appearance was just decent enough. But, now, whenever I see the mirror in my room or bathroom, I realize that I look… suddenly very much older than I am. The shrunken body mass and my skin have gotten wrinkled and my face has gotten a pale complexion and mopey look. These depressing things have happened during my 4 years of liver cancer treatments. (Jeong)

Ever since I lost my wife, I have been experiencing uncomfortable, odd feelings in my neck as if a sharp fishbone is stuck in my throat. When I see the TV commercial, a little girl and her mom using a fancy washing machine, I feel choked up. That washing machine advertisement reminds me of my late wife who really wanted to have that washing machine. I regret that I scolded my wife for exaggerating about the noise of the old washing machine. Now, my kids all have a college degree and have a decent job which means I completed my task as a father. The money that I had been saving before my wife died is still there because my kid got a full scholarship… didn’t need to pay the tuition. But, it was too late to order the washing machine for my wife. The savings are still here… and the same advertisement of the fancy washing machine is still on TV… but my wife is not here anymore. That makes me very sad. I know it’s freezing and snowing outside but staying inside the hospital makes me more lethargic. So I asked the care team if I could go out in the wheel chair. The nurse came and started rearranging all the bottles and the oxygen tank. For some reason, the gauge on the portable oxygen tank was low and one of the lines on my arm got disconnected. I didn’t mean to cause all those troubles. I realized… for an old man of my age with liver cancer, it could be more difficult to just go out for a walk than for other younger…non-cancer patients. Anyway, by the time the oxygen tank and the bottles and needles were fixed, it was getting dark outside and it was too cold to go out. It made me very sad. Even though the doctor had said that I could go out and get some fresh air, often I couldn’t carry out our plan because I didn’t want to add more troubles to my weak body

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especially when my stomach was very upset, or when the weather was really bad. This is sad. I can prove that my life can be better if I have a little more time to complete my unfinished work. After 5 years of living with liver cancer, now I have just started to see my life objectively: what is the right thing to do?... what is not quite right to do? (Taek)

I am very sorry for my wife about the fact that I may have to wrap up and depart very soon toward an unreachable place. Who will look after my wife? Because of her back pain, my wife is not capable of lifting or moving heavy things. Who will help her dig our back yard to bury Kimchi pots every fall? My wife seems to be getting pale because of my demanding cancer treatment schedule. Just thinking of my wife who will be left alone makes me very sad. During the repeated hospital admissions for cancer treatment, my arms have countless needle puncture marks and my face… actually… my whole body doesn’t look the same color as I used to be… not to mention gray hair. I don’t want to look in the mirror even for shaving. The clear reflection in the mirror makes me very sad. (Myung)

The embarrassing visit to the ER by taking an overdose of sleeping pills was an accident and the accident was out of my ignorance. I’m telling you the truth. It wasn’t a suicide attempt. I didn’t attempt suicide. I just didn’t know how the overdose of the sleeping pills could be seriously harmful to me. It was a sad day. I made everyone so sad. (Noh)

I also know… sitting here and waiting for my death is no way to watch the clock tick down. I wish my wife could have asked my opinion first. Using the Chinese medicine could be just a big waste of money. I didn’t mean to be disrespectful regarding my wife’s choice, but the truth is… seeing my wife spending money indiscreetly… makes me more upset. I wish I could see my kids’ college graduation. The important thing is… I know they will graduate from college regardless of my presence here. I regret… there aren’t many valuable things that I can leave for my family. I am very sorry for that. (Seon)

Living with liver cancer… that experience… I am over-the-top tired and I am hoping this is all some sort of weird dream. Over 3 years’ time has passed, I feel like… I have been living a nightmare… an unending nightmare. When my health is gone, I can never get my life back. That’s what makes me sad. For 3 and half years, I have been fighting liver cancer. I have had nothing on my mind except expecting a miracle from God. So… my concerns are mainly focused on what I am going through. I am a sociable person who loves going out with friends and co-workers. But, during all these years, I have lost contact with my childhood friends who were in my hometown. You know how it goes… you lose touch, time goes by. Too much time, in this case. I received an obituary letter from a friend’s son, informing me about my friend’s funeral schedule. I was so shocked when I opened the envelope. I have never wanted to disappoint my wife by departing this world unexpectedly… by leaving her here alone. I am very surprised I have not heard my wife mention her sadness or anxiety regarding this situation. Well, you know how it is… the death and dying process is a very sad subject to bring up at the table. My wife and I… we both know that my journey will be over soon. That’s why we don’t talk about that because it’s too sad. (Hong)

I feel so sorry that I may not see my baby girl’s wedding. It is very sad to think that I may not be able to be there to help her. My youngest daughter’s wedding is coming soon. What can I give for my kids before I die? I have been thinking of that a lot lately. Considering my current health status, I don’t think I can manage to sit and watch the whole wedding ceremony. Since my heart isn’t at peace because of disturbing thoughts… my body is aching as well. When I think of my baby girl’s upcoming wedding, I feel choked up. I shouldn’t leave her like this… in the middle of this difficult time. To me… living with liver cancer is not an option. It is life or death. There are no other options. If I can’t survive, I must die. I wish… if there is anyone who can become a good listener for me,… if there is anyone who can prevent me from carrying such a heavy emotional burden by using their medical skills, I would gladly like to take the person’s advice. I know that I have an incurable illness. For the last 2 years, how many times have I wanted to end my misery comfortably in peace? (Kyu)

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Anger (n=20)

Some people say I am a lucky guy because I don’t experience severe pain… considering that I have terminal stage of the liver cancer. Yes, you could say that... and I used to talk to other cancer patients like that before I got a liver cancer diagnosis. But, now... I mean… after my cancer diagnosis… I don’t get the same solace I used to. How come people so thoughtlessly throw out the word ‘luck’ when speaking to me? That’s very insensitive of them. It was before Christmas last year and I was waiting for my test. I could hear a group of students playing handbells in the main lobby. I was very annoyed by that. I am sure I could have really used and enjoyed the music when I need it but their timing was too bad! At that time, I was anxiously waiting for my test results. I wasn’t really in a good mood to listen to the cheerful audience chanting songs. People in the main lobby seemed like… they were living in a very different world from mine. The hospital should have moved the concert place from the main lobby to another soundproof place if they had thought about the effects on us who were waiting close by. (Tae)

I didn’t go to college and didn’t have a chance to have higher education. Plus, I am not a logically, well-organized good talker. I was just so upset and feeling left alone and being abandoned by my co- workers. When I had that argument with my boss, I couldn’t control my overwhelming feelings… feelings that there has to be something wrong in the work place. But I didn’t know how to explain it logically. I just rambled and rambled and… yes, finally, I cried so bitterly. My friends… who were supposed to cheer me up instead of bringing up the cruel reality… they often see me as a helpless cancer patient. About 5 years ago, the moment I was diagnosed with liver cancer, my friends and family considered me as having a death sentence. My name is not cancer. I have my own name. I am a person who is fighting against cancer. When my close friends or family give me that look, I feel that I am about to explode. I have cancer but I am not dead yet! (Yeon)

I am trying to believe that my life has been full of positive experiences. But I don’t see it. Someone might call it Hwabyung (translation: Korean culture-bound syndrome). I would call it queer or strange fate. I think that I was fated to be unhappy and my job is fighting against that nasty fate. But I wasn’t brave enough to change my unhappy marriage so… I stayed and stayed there… and ended up with liver cancer. I don’t like my obedient and quiet character. I have much to regret about the fact that I didn’t speak up and didn’t complain about my symptoms to my husband. My health was as strong as iron and I even hardly caught a cold. Overconfidence about my health might have brought a big backfire to my life. I also feel that our society… and our culture brought the incurable disease on me… especially by giving me stress… by forcing a woman to be obedient. I wish I had never been born in this society. When my neighbor invited me to her house, I had some hesitation in accepting the invitation because I didn’t want to hear embarrassing questions at the dinner table. I have been living with liver cancer… living longer than my doctor’s expectation. People will have some curiosity about how long I can survive. I am tired of answering the nonsense. I don’t know about that… I really don’t know. Whenever I was asked such cruel questions, I had an overwhelming urge to stitch up their lips. (Mah)

One day, I was very annoyed by my husband’s nasty behaviors. I am sick and tired of yelling at him. Does he know what kind of pain I’m going through? His insensitive words are truly distasteful. How about my frustration? I’ve never said a harsh word to my husband before. I was usually a calm and reasonable person and my role in the family was a moderator between my husband and my kids. But I realized that I finally reached the limits of my patience. His constant complaints and distasteful behaviors like dropping everything on the floor and making a huge mess and never putting his dirty laundry in the basket… and I could go on and on. I love my husband but… yes, his irritating behaviors were straining my patience. Even at the time when my life was in danger, I was worrying about him and I felt relieved that he didn’t have the same cancer as mine. When we got home, I wanted to comfort my husband over his terrible traumatic experience. Wasn’t I the one who actually needed to be consoled? I feel that the situation is bitter… and I feel that I have to deal with double jeopardy… with my disease and my husband’s emotional trauma. I have had it enough. Over the repeated cancer treatments, my skin has been discolored and became yellow as well as my eyes. I was

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asking myself so many times. What has happened to me? Why me? Losing my worthiness as a woman is like a warrior losing a leg. I threw away all my yellow or yellowish clothes because I don’t want to add more yellow tones to my body image. (Sook)

I’ve hated my doctor for leaving me no choice. I’ve hated my care team for not telling me the truth earlier because my wife didn’t want to inform me. It was too hard to put up with very complicated procedures without knowing my diagnosis. I don’t want to have that blind experience again. I didn’t know what was going on with me. Months and months later, I found out my disease from my doctor. (Choo)

One day, I was in the art class of the hospice program. I was trying to draw an oriental painting of the Sagunja (translation: four gracious plants which are plum tree, orchid, chrysanthemum and bamboo). But, I couldn’t focus on drawing. I just couldn’t do that anymore. One of the plant’s names reminded me of an evil man I hated. After an hour’s struggling with the painting, my hands were stained with black ink. How can a person filled with anger and rage take the brush for painting good things? I doubted it. But, how could anyone understand the undying anger of a human being? I am an average middle-class, law-abiding citizen. I have never considered myself a sinner because I have never broken any rules or laws in my life. I like the hospice program in this hospital but I don’t really like being called a sinner. Every time I hear the word sin or sinner, it makes me angry and I feel intimidated by church people. What a load of crap! I didn’t sign up to be accused as a sinner. (Kyung)

I have been trying to meditate so I could clear my mind…but thoughts of taking revenge on the unfair society for giving me a miserable childhood and this disease... fill my mind. (Young)

Because of the delayed help, I…of course, I threw up and I had to change my clothes and sheets and pillows and blankets. The disgusting smell…it got into everything…my hair and hands and face and mouth. I still can’t understand about the hospital system. Was reporting or writing a chart more important than I? I know they are doing their jobs and they have every right to go home after their shift. But, still…watching those care team members make me upset. I wish they could do their reports quietly and expeditiously rather than laughing or unnecessary loud talking. (Jang)

I’m 60 years old… my age and the delay in cancer treatment because of other family problems caused a very serious condition…this incurable illness...liver cancer. My doctor said, any kind of cancer… specifically liver cancer, can’t be detected in its early stages because it progresses suddenly and when the patient can’t carry on daily routine due to fatigue, only then we find out it is cancer. The liver cancer progressed dramatically while I was too busy looking after my father-in-law. It can just happen to anyone and at any time. Who’s going to reimburse the time that I used up for my parents-in-law? So if something happens to me, it would be very hard to clarify where the responsibility lies. I don’t really mean to be rude to my mother-in-law. But sometimes, I have a strong urge to express my anger without any filters. I feel so frustrated when my mother-in-law gives me that look. It seems that she doesn’t want to care about my fear or near fatal experience or sadness. Look at me now! I can barely drag myself step by step up the stairs. What else does my mother-in-law want me to do? No wonder I have Hwabyung symptoms. (Ae)

I hate religion… I hate pastors who are so busy selling their faiths but are not practicing or living as they preach. I really hate to see people who have double standards and two faces and forked tongues. Why did God create cancer in the first place? Should I thank Him for that as well? The care team gave me information about a hospice program or a church-volunteering program. But I am not that desperate yet to beg their generosity. For over 40 years, no one could help me. All of sudden after 40 years, how can anyone help me ease my pain? After my death, if I have to see those mean people in the Christian heaven, I would like to strongly refuse to go there. My parents… yes, I wouldn’t mind meeting them again in another world. However, my fiancés and my academic advisor… I wouldn’t like to see them again even at my funeral. Any place where I would go after this life, they shouldn’t be in the same place. I won’t try to forgive them or reconcile with them before I die… I won’t because I know that I can’t get straightened out with deranged attackers. They are insane… they are less worthy than animals. I will put it that way. (Hee)

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What I don’t really understand is… how this could happen to me who had no family history. That’s why I was very upset and frustrated. I am not an alcoholic or drug addict. Before I retired from my job, I used to walk from my house to my work place almost every day because I loved jogging for my health. I wasn’t a heavy smoker… I had just a couple of cigarettes per day… that’s all I used to have. But I quit smoking a long time ago because I thought smoking was a bad idea to set a good example for my little boy. I did everything that I was told by TV health education programs. I don’t really understand how this could be happening to me. It makes me so angry. (Hoon)

About 10 years ago, I quit drinking and I quit smoking because of my wife’s yapping and her damn irritating complaints. I did everything that my wife told me to do from quitting drinking to quitting smoking. But, the results were… not so good. I ended up with liver cancer anyway. I put my anger on my wife’s feeble shoulders so many times, yelling at her: ‘By quitting or changing my bad habits, this is the good news that I deserve to get?’ So I was very angry with my wife and I blamed her a lot. I mean… regardless of my efforts at quitting a bad lifestyle… I am dying of cancer which is the worst kind and most hopeless kind of cancer. (Jo)

I don’t drink and I don’t smoke and I don’t have family members with cancer. I just don’t know how this could happen to me. I am very upset. I am so angry with all the scientific information that I had. Yes, I am also very mad at the doctor who works at the health care center of the hospital. Every year I had a routine check-up but nothing came out wrong. One day, all of a sudden, I was informed that I had to take a further test. I believe the doctor should have known better ahead of time… before the actual cancer diagnosis happened. Now, here I am… I am almost standing at death’s door. If cancer could happen without warning to anyone at any time, what’s the good of regular check-ups and all the annoying health education classes that I had to attend at work. I really don’t see the point here. (Yang)

It has been almost 2 years since my first cancer diagnosis. I am still angry with this hopeless situation. There are more than a million kinds of disease in the world. Out of these million kinds of disease, I mean what are the odds that I could get liver cancer? My parents and my family and my friends and even people around me have never had liver cancer. I don’t drink and I’ve never smoked in my life. Where did I get this deadly disease? I don’t see any reason that I should get liver cancer. That makes me panic which also dampened my spirit, making me a helpless victim of this scary disease. That’s why I was so angry. Yes, I have liver cancer. And so what? Am I suddenly becoming a monster? No, I am the same person just like other people who have different health problems like broken legs or a sore throat. In my case, I should say… I have a broken liver. Is that my fault? Let’s see, when you see someone with broken arms or legs, we don’t make a big fuss to criticize them. I believe that I should be treated in the same way. (Kang)

I quit smoking and drinking because I was told very seriously that I could have died of those risky things, so I quit at once. After quitting smoking and drinking… still I have liver cancer. What was I supposed to do? I don’t really understand what happened to me after quitting smoking and drinking. If my life was scheduled to end in my 60s anyway, I didn’t really have to quit smoking or drinking. By quitting my bad habits, this is what I get in return? (Yul)

Whenever I come to the hospital, a doctor updates my current blood tests or other results in a calm and dry voice. How could he speak of my illness in such a way? I don’t expect tears or very upsetting emotions from my doctor but… at least… don’t I deserve a sympathetic voice from my care team? The doctors must have seen more than several hundred liver disease patients in their entire lives. But, I believe that everyone’s death and dying process should be treated as a unique and precious experience. Would they show the same dry face if one of their family members was diagnosed with liver cancer? That’s what’s bothering me the most recently. When I was not able to hold food down because of the vomiting, I believe the care team should have done something more… instead of continuing to encourage me to eat the hospital food. There must be another way to support cancer patients’ strength. I strongly believe… there is no point in insisting on the traditional way… like eating unwanted food. My doctor said giving other choices instead of having a regular meal would not be the best thing for me. Well… how many days and times will I have from now on? What’s the

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point of regulating other options that I could take? I don’t mind having many bottles and needles in my arms. If that’s the only choice that I can take… then I will take it. (Sung)

Another upsetting thing is my doctor’s comment regarding what to eat. I know that I shouldn’t eat salty or greasy food anymore. On second thought, how much more time do I get to live by restricting my diet to low salt and low fat? I am dying anyway. If that’s my future path for certain, why shouldn’t I have the last-minute pleasure of tasting my favorite foods? I mean… cancer has been found in every corner of my body now. What am I saving the favorite food for? I don’t understand. (Lim)

When I had extreme stomach aches and had breathing difficulties, my doctor didn’t tell me what was wrong with me. My anxiety and concerns were already overflowing but he didn’t even run a simple blood test. That doesn’t make any sense. I am not expecting some kind of remarkable cure. What I only need is some comfortable support when I am in pain. Is my life worthless in their eyes? Is that too much to ask? (Park)

I had a long time to think about my life. People may think of me as a lucky man. I am trying to be a strong man. Look, I’m just saying that I think I am more upset than I’m letting on. I may not make it to live until tomorrow. Where exactly is the luck in that? (Hong)

What is a physician? It’s a person who heals people’s lives. My doctor may have wonderful skill to prescribe chemo drugs and to perform a liver cancer treatment procedure but he is not the one who has enough space in his heart to sympathize with a patient like me. I have no doubt that he is a bright doctor. But I believe that a great doctor isn’t someone who only cures people but someone who motivates the patients to overcome their illness. In that department, my doctor is useless. (Kyu)

Nervousness (n=19)

I know I’m going to die before my time because of this tormenting sadness in my deep heart. This is killing me. I am talking to myself more than a dozen times a day. I have to let it go… let it go… let it all go. I have been experiencing ups and downs in my mood… feeling deeply troubled. (Yeon)

I may die 2 weeks, 2 months, or 2 years from now. One day, I was wondering and questioning myself. Will I have tomorrow? The uneasy feelings… fatigue… breathing difficulties are keeping me from long jogging or hanging out... drinking with my friends. Everything changed since day one... the day I was diagnosed with liver cancer. I have been going through the off-the-chart level of stress... emotionally and spiritually. Someone told me it might be too risky to take a break. Honestly, I haven’t a clear mind to think about what is going on in my body. Many people have told me a lot of different things that make me very confused and nervous. (Whan)

Though I still don’t know why I ended up here or why I didn’t try anything to look after myself earlier, that’s not truly my fault. I can’t seem to get the ominous presentiment out of my head. I can’t shake the feeling that there must have been something very wrong. I admit that the whirl of negative thoughts has seriously brought my strength down. It makes me nervous. (Mah)

When I was diagnosed with liver cancer about one and a half years ago, my husband was terribly panicked which was worse than my despair. At the doctor’s office, he… panicked and kept stumbling over his words. I knew he was emotionally depending on me so much. My husband is a typical Korean man who never shows his feelings in public. But that time… it was different… very different. That made me very nervous. That meant that I was really, really in big trouble. Lengthening… prolonging my life won’t solve my crucial problem... like fear. I know that predicting how long I will survive is very difficult. That’s why I feel constantly unstable about my uncertain future. I am beginning to think: what if my doctor mispredicted my disease progress? I must have given up too early. Even in my prayer, I can’t keep calming down my feelings of being unsettled. Believing I only had three to 6 months left to live was a really dark period. The possibility of living beyond my

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expiration date was way beyond my imagination. Sometimes, I think that I may be going to die of something totally unrelated to liver cancer. From my experience, the constant feeling of nervousness ate away at my self-confidence… just as rust eats iron, so my overly-sensitive worry ate my heart. (Sook)

New treatments also made it possible for me to buy more time. Those new liver cancer treatments seemed to be working well. But liver cancer is really sneaky and incredibly smart. I shouldn’t lower my guard. I feel as if I am treading on thin ice every day. (Tark)

My doctor said there was no cancer found in another part of my body. I felt relieved for a moment but I knew the sense of relief wouldn’t last long. I feel there is a creeping cancer coursing through every corner of my body. I know that I must not give up so recklessly. But I don’t want to be obsessed with sparing my life. I have been living longer than I was supposed to. How would I know how many years or months are left for me? It would be strange if I were not restless. (Choo)

I have been living with liver cancer for over 2 years now. I know all the drills like radiation and blood test and CT and MRI. But, I never get used to receiving chemotherapy. I don’t like being poked with needles by multiple nurses and multiple times. Instead of making such an effort to find a blood vessel, shouldn’t they use some high-tech device to find the right vessel into which to put the needle? I have bruises all over my left arm and hand because they couldn’t find the right vein. I am a right-handed person but the site where they finally placed the needle is on the back of my right hand. It’s very uncomfortable for me to go to the bathroom, to grab a spoon, to read newspapers…or to button my clothes. I am usually good at enduring pain and I am very good at waiting for my turn patiently in the testing room for hours and hours. But I can’t take it any more to be poked without outcome. I hope they won’t try to test my patience this time. (Seong)

About 4 years ago, my doctor told me that I had 6 months left to live. That’s why I gave up and told my wife not to do anything. I thought it’d be better to die quickly if I couldn’t get cured. Frankly speaking, I don’t feel hopeful about the future laid out before me. Every time my wife mentioned about new cancer treatments about which she had heard, it made me nervous and it shook up my hard-won peaceful mind that I tried to keep so desperately by putting forth a lot of effort. (Kyung)

My doctor told me that the current liver cancer treatment seemed to be working fine. He said the cancer was somewhat stabilized without spreading to other parts of my body. But I am worried about the fact… what if the current cancer is coming back with stronger destructive power. I am afraid of that. Even though my condition is quite stable now, I feel like I am walking down death row. (Keun)

But, very often I feel that I am on the verge of a breakdown. Sometimes a dim noise from the next room seems so loud and bothers my sleep. (Ae)

This is my fifth year living with liver cancer. Although I have been living beyond my estimated expiration date, I have never felt relieved or peaceful because I knew the cancer could always come back to haunt me again. This kind of waiting without any clue about time or date when I should be leaving… this kind of unreasonable waiting... it is so nerve-racking. (Hoon)

As my doctor recommended to me, I went to a hospice program during my first year of cancer treatment. Yes, the program surely gave me a lot of information… too much information that I really didn’t want to know… about the death and dying process which made me more nervous than before. (Jo)

From my past experience with my co-workers… as I accomplished more and more, as my skills got better with time… the obstacles grew bigger. I had to overcome a lot of things so far to get here. It cost my family quality time and eventually my health. I know, in this economy, everyone looks for a job. More than a hundred people would be lining up to apply for my position. It is true that I am dying but I am still living. I am still able to work. I don’t want to be replaced or be forgotten too quickly. (Yang)

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I trust my doctor and the care team and I feel more comfortable when I am in the hospital than when I am at home alone. When I am alone at home, I feel more anxious and suffer insomnia. When I look in the mirror at home, my face seems to be turning darker and more yellowish than when I am in the hospital. It could be just an optical illusion or different light bulbs between home and the hospital room. I feel much safer here in the hospital. I asked my doctor if I could get the H1N1 vaccine. He said that the current cancer treatment medicine should be administered first before the H1N1 vaccine. He said the H1N1 vaccine could be poisonous if the immune system of my body is not strong enough to handle it. I was disappointed by his comments. But it’s true that I have to wait until my general condition gets better… strong enough to handle the H1N1 vaccine. Until then, I have to be very careful. (Jin)

Even though the blood tests or other scanned results are fine, I still have this funny kind of feeling… feelings that I can’t explain clearly. I’ve heard from my doctor that I am doing OK. One moment I feel that I am walking on clouds. On the very same day, I have the feeling that I am tumbling down a dark, steep mountain slope and hanging at the edge of a cliff. I can’t find a logical reason for the way I feel. I know that I am dying. Every single minute is very precious to me. Between the cancer treatment and waiting for other bad news, my nerve is about to break down. Whenever someone opens the door to say something, I feel that I am going to have a heart attack. I am sure that the doctors are doing their jobs. But, seeing a group of those white coats gathering in front of my room makes me so nervous as if they were there to inform me of bad news. Most of the time, they come to check on my progress but still I have to close my eyes to avoid eye contact or to avoid hearing their discussions because I don’t want to hear or know about the bad news until I am actually determined to die for sure. (Yul)

I am still feeling nervous about the remaining time in my life. I didn’t come into this world by my own will knowing what was waiting for me. I don’t have a clear picture of another world or life after death. What will happen to me after my death? (Gil)

Outside... it is freezing and snowing. But inside the hospital, the air is so dry and hot. I caught a cold a couple of days ago. I have flu-like symptoms such as fever, dry mouth, and muscle pain… and coughing. I am still feeling pain in my joints and I have lost my appetite, too. I feel chilly and shivering. I talked to my doctor and he said it could be just a common cold but he can’t be sure. Waiting for my blood test results... it drives me nuts. I asked for some pain killers to take care of the fever and joint ache. But my doctor told me to wait until my blood tests come back. He said… since cancer is found in another parts of my body at multiple places, administering medicine requires extra cautious observation. I agree with him but I don’t think that I can endure one more day, waiting to hear the results of the blood test. It makes me very nervous. Living with liver cancer is like trying to fit myself into a different world. Imagine a guy who has never used a steam iron and now this guy must learn how to do ironing safely and quickly. Learning how to live and embrace death at the same time is a very complicated thing and confusing. I want to know how to use the iron but I don’t want to hold the iron too close because it’s very hot… hot enough to get burned. It would make me very nervous. Living with liver cancer is something like that. (Jong)

For the past 5 years, I have been trying to eliminate cancer cells from my body. From a certain perspective, the cancer treatment drugs are working effectively enough to kill the cancer cells in the liver. But, from another point of view, I feel the very cancer treatment drugs are gradually killing my normal bodily functions, too. I have lost my sense of taste and smell and my strength. I feel… that my physical condition is becoming worse than before receiving the cancer treatments. That makes me very nervous. (Noh)

Lately, I can’t sleep well… and I can’t eat well. I can tell… something is not right in my body. Last week, I had a whole body CT and bone scan again. As I feared, more cancer cells were found in my lungs and bones. Now, I have to face and go through things far greater than anyone can even imagine. (Joong)

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Helplessness (n=17)

Whenever I am watching TV or reading newspapers, all kinds of information are there giving us very confusing directions. It’s very hard to make a good decision in the flood of information. What should I eat? What shouldn’t I eat? How much Chinese medicine should I use as an alternative therapy? But, I can’t discuss this matter with my doctor because I know that the doctor who studied western medicine doesn’t like to also use oriental medicine. I feel like an idiot... completely helpless idiot. (Tae)

Living with cancer is like living with a time bomb. The moment I got comfortable enough to adjust to a new lifestyle, always something else came up in the blood test and I had… my life had to get wheeled around all over again. The worries and confusing information… consumes me and get me into a nervous breakdown. I can’t sleep well at night. Many times, I almost collapsed because of the emotional suffering. Anyway, after all the confusion, I feel nothing but helplessness. An oriental doctor said that I shouldn’t eat meat or fish and my own doctor said that I could eat whatever I felt comfortable with digesting as long as my blood tests were OK. Can someone tell me once and for all what I should or shouldn’t eat? Either an oriental doctor or a western medicine doctor… they are doctors and surely they should have known better than I. For weeks, I didn’t know what was going on with my test results. Obviously, my wife and kids didn’t want me to despair or give up too quickly. Weeks and weeks later, my doctor told me the truth. Shouldn’t they have told me about this sooner? I didn’t question the new diet plan or the medicine given to me. I merely thought that my hepatitis symptoms were getting worse and becoming more complicated. I understand that… probably my wife preferred that I stay away from complicated stress. But… wasn’t I the one who had to fight against my illness? Weeks and weeks later, finally, when I found out something must be terribly wrong, I felt blinded by not being told the truth. I felt like… I was as blind as an idiot bear. Yes… yes… I know the typical fool like me become wiser after the terrible episode. (Whan)

I know every life has ups and downs. I feel that I am having a difficult time climbing up from this miserable swamp of failure. I feel… the more I try to escape the more I sink into a deep slough. No one expected me to get better or to survive longer than 6 months. I have been walking through a dark forest struggling to find a direction without a compass. (Tark)

The recent economic crises took my money… but at least gave me a second chance to get back on the horse. My close friends said that my life reminds them of weebles. Weebles wobble but they don’t fall down. My friends said that my life is a lot like a roly-poly toy. However… if my fate were meant to be suffering, regardless of my efforts, I wouldn’t start over again. If that’s true, I am going to rest. I’m not going to fight against cancer. I am tired of fighting a losing battle. (Seong)

When I was young, I was so sure that I could achieve anything or reach my goal as long as I worked very hard without giving up. But…this…liver cancer…made me think over things that I can do and things that I can’t do. For the first time, I realized that I am nothing without life…without a heart- beating body. It makes me feel helpless. (Young)

In the hospital, whenever I saw an elderly person with a terrible disease, I thought…I wouldn’t like to live so pitifully as that. I also thought…it would be better to die than to prolong my pathetic life. What’s all the treatment for? No matter how good or effective the cancer treatments are, I will die in the end…whatsoever. I feel so helpless. (Jang)

By putting in a lot of effort, what I can only expect would be to delay the pressing crisis temporarily. The bottom line is… I came to see the doctor but it was already too late. Although intensive cancer treatment was important, the right time for applying the cancer treatment was even more important. But, I realize the importance of timing at this late stage of cancer. That makes me so helpless. I feel as if I got lost in the middle of a dark, endless, tangled maze. If I could turn back the time, could I live my life differently? (Sun)

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I can’t believe it’s already been 3 years since the liver cancer diagnosis. I feel like I have been resisting foolishly against the Divine Creator. I know that I need to put down my stubbornness at some point. Otherwise, I will be a blank idiot resisting to the bitter end. I don’t feel hopeful about my future journey. This cruel reality makes me so helpless. I should’ve been more aware of the situation or the fact that my life could be a lot shorter and I might not be able to make it until my daughter’s wedding. This could be her most desperate time when she needs my help from the choice of wedding dress to packing her boxes to move out. But currently, I am of no use to my daughter. (Ae)

Last month, when I came to the hospital, my doctor reminded me once more about the fact that I may or may not have one more year left to live. I knew that he was trying to do his job by objectively telling me that fact. I know that I should be more aware of my critical condition. But, every time someone brings up this cruel reality, I feel so helpless. (Hee)

Once I grasped the thought and fact that I couldn’t and can’t and won’t be able to change my fate, I felt so helpless. I wouldn’t like to repeat this depressing experience again. The terrible feelings literally devastate me. (Dong)

I learned one thing… one important thing about living with liver cancer. So many times, I wanted to drop every scheduled cancer treatment that I was supposed to receive. To me, receiving cancer treatments could be useless defiance and could be a waste of time… a waste of money. I think I’ve had enough. Hospital admission is no surprise for me. Over 5 years, periodically… I have come to the hospital and was discharged back home. One day I found that I was not upset anymore about the fact that I had to go through another cycle of chemotherapy or somewhat bigger procedures. Needles in my arm used to bother me like heck. Now, I am just getting used to them. I am getting more used to pain… physically and emotionally. What bothers me is the fact that the painful needles are not bothering me anymore. I feel like a bird trapped in a cage. I am tired of complaining about my discomforts and my cruel fate. Probably, I might be shutting down my feelings because it’s too painful. Sometimes… quite often… shutting down makes me feel helpless and emotionally distant. Obviously, I am a man who survived unhappily way longer than he was supposed to. (Hoon)

It may sound funny. But, I can tell with my eyes closed when other patients have oysters or shrimp or other kinds of seafood on their dinner table. A crispy, fried oyster or shrimp with a fresh beer was the joy of my life. Yes, it was the greatest pleasure of my life. But, now, it’s pie in the sky. (Jin)

During my life’s journey, even though I have lost, I always bounce back pretty quickly. So I have come this far. However, I don’t think I will be able to overcome this time… with liver cancer. No matter how desperately I am trying to fight, to me… it seems like the cancer has its own tremendous destructive power to grow worse regardless of what I try. My light bulb is burning out. That makes me feel so helpless. (Yul)

The most difficult thing living with liver cancer is the fact that I can’t do whatever I want. My hobbies are long gone. I had to give up most of my hobbies because my doctor told me that my immune system was not strong enough to protect me. The doctor said, judging from the blood test, a common cold or a simple flu virus could be deadly virulent for me. I can’t do this... and I can’t do that. I shouldn’t do this... and I shouldn’t do that. Can you tell me what I can do? (Myung)

In addition, recently, while I was doing gardening, my finger was pierced by a thorn… but it didn’t heal… there was swelling and red spots. Still I have this problem with me. My current cancer treatment is getting harder because the results of blood tests are not good enough to carry on. I feel… nothing seems to be working out for me. How did that happen anyway? It… I mean the whole situation… makes me feel helpless. (Park)

As far as my current cancer treatment, it is… so far… so good. In fact, I know that I shouldn’t get too comfortable with the current blood tests. The cancer cells will eventually catch up with my efforts. And I am not fond of following miracles. In fact, I am slowly dying every minute. (Seon)

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During the repeated, arduous cancer treatment, I feel like… I am becoming like a prisoner trapped in a barbed wire wall. I know that liver cancer is an incurable illness… there is no other way around. That makes me feel helpless every day. (Joong)

Ambivalence (n=17)

Some days are good but some days are not so good. I can’t explain clearly these kinds of complicated feelings... feelings like a seesaw... the seesaw between heart-tearing frustration and glimmering hope. I know it will be over soon. (Tae)

If I had known that I could live more than 3 years, I would have gone on a family trip. Since I was told that I had about 1 year... at the most left to live, I have done things that I could not possibly afford... like alternative Chinese medicine with rare items… those things I couldn’t possibly continue doing in the long run. No one ever told me that I could certainly live longer than 3 years. I should be happy for my miraculous survival but I am not. (Choi)

I love my grandkids but sometimes I feel annoyed by their irritable crying or fighting over toys. My kids and my grandkids… they will live their lives to the full after I am gone. Will they live on the memory… the memory of me? Watching them playing and fighting… what crossed my mind was some sort of bitterness. It seems that my prayers have been answered. I have survived almost three years. When I was first diagnosed with liver cancer, my doctor told me that I had advanced stage liver cancer. I was told that I had about one year or less left to live. Well… I passed my expiration date… the date that I had been told I would die. If I were a chunk of meat or a piece of fish, it must be way overdue to throw me out. If I had known that I could survive this much longer than I had been told, I would have done some more meaningful things for my family. (Whan)

I was told that I had only six months left to live but I survived more than four years now. I think I already extended my life… my painful life too long. (Ryung)

On my birthday this year, my kids didn’t really need to prepare a big feast table for me but they wanted to do it. I knew this could be my last birthday that I can celebrate with them. When I came out of my room… I saw the feast table and I was flattered but, at the same time, it made me feel... the feeling that what we might call ‘bittersweetness’. The atmosphere was not exactly to my liking. My kids are all grown up and I don’t think they would need babysitting by me. That’s what life is like… that’s what it’s like. (Tark)

This is my fourth year since I was diagnosed with liver cancer. For the last four years, I really focused on preparing for my death. Every day I thought… death would be in the impending future… maybe tomorrow won’t be granted to me. I just wanted to be less fearful of the dying process. But I have been surviving for more than four years now. I wish I enjoyed a cheerful thought about the present moment that I have…rather than being obsessed with unknown death. I prefer the devil I know to the one I don’t know. I feel that I have wasted my time concerning my death…death still shows no sign of coming…death still has not happened yet. Sometimes I think…I hope my wife doesn’t get too comfortable with facing my death. I feel relieved about the fact that my wife is getting used to reading hospice books but I feel some bitterness watching her reading those books peacefully. Don’t I need at least one person who can sob her heart out for me at my funeral? Am I lingering in this world longer than she had expected? Am I too obsessed with prolonging my life? Currently, the most difficult thing is to maintain balance between empting my greedy heart and keeping a faint hope. I try not to be overly jealous of what other people have or enjoy. I know, deep down, I really want to live longer. I know that holding the thread of life is the only way to keep myself alive...sane. (Kyung)

Besides…considering my desperate efforts, even a stone Buddha would’ve shown mercy by now. I don’t know how long I can fight this losing battle. My life could have ended three years ago when I heard that I had six months left to live but I survived three years more than I was supposed to. Should I be happy for the extra survival? Yes, I should be very happy about that…but I am not. (Jang)

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I have met many patients in the hospital but most of the patients who were diagnosed at the same time… have already died. The rest of the patients that I have met in the hospital were not the same as my cancer progression. Whenever I saw them in the radiation room or another cancer treatment room, I didn’t know what to say because their conditions were far more serious than mine even though they were diagnosed more recently. I couldn’t share my case with them because I didn’t want to make any of them upset. Yes, I have survived almost four years more than anyone had expected. I consider myself as a lucky survivor... but I feel extremely lonely. How could anyone understand what it is like to be surviving longer with a time bomb inside? (Keun)

My husband has been helping me out and looking after me at home and in the hospital whenever he can. But… sometimes… there is a moment when I need to be alone and to think about my remaining time. Last Sunday, between severe vomiting and diarrhea, I had accidents several times so I had to change my clothes and bed sheets and everything. I spent all night in the bathroom. The foul smell was so disgusting. I would have been more comfortable if my husband just called nurses to help me but he kept insisting that he was capable of changing my clothes. Honestly, I felt… actually… less nervous with my nurse around me to help. Nurses’ helping hands were a lot better than my husband’s clumsy hands. I am not complaining about the fact that my husband was trying to support me. I found my husband’s overreaction to be quite annoying. I really wouldn’t like to show my smelly clothes to anyone even to my husband. I am dying but I pray… people should remember that I am still a woman. (Hee)

My doctor told me that I had at most… about 5 or 6 months left to live when I was diagnosed with liver cancer. Well…that was about two and half years ago. I have already been living longer than I was supposed to. Every day I feel that I live on borrowed time… the borrowed time that I won’t be able to control. That makes me very sad and even thinking that thought makes me more stressful. About two and half years ago, when my doctor told me to prepare myself for the worst…… I prayed and prayed on my hands and knees to keep the angel of death from the door for one year… at least… so that I could prepare myself by straightening up my things. I have been surviving with liver cancer more than two years from that moment. I don’t seem to fit in the extended period of time. Have I prepared myself well? Have I satisfactorily accomplished what I would want to do? But, still… I am struggling between cancer treatments and preparation for my death… my last journey to heaven. Although God granted me more time… actually twice longer to prepare, I feel that I haven’t finished anything properly… like arranging my clothes or bank accounts or guest list for my funeral. Considering the track record of the last two years, I don’t think that I will be able to get my things done in six months’ time even if those six months would be my last six months. I know that liver cancer doesn’t have a good survival rate. And… of course… whenever I asked my doctor about the estimated time frame of mine, his answer was the same which was about six months left to live… which was always the same as before. I have been repeating this ridiculous six months thing. I have been repeating this nonsense five times over and over again… until now. (Dong)

The most difficult thing was to accept my doctor’s advice. During my cancer treatments, he was right… he usually was right for many things except the time when he told me about the survival rate of my type. Well… he said I had only five or six months left to live. At that time, I was very shocked and I just blindly accepted whatever he told me. Five or six months’ time frame… that was what I set up in my mind by giving up many things. I had nothing but death in my heart. I wish I could get a second opinion from a different doctor so that I could actually focus on important things rather than the death and dying process. When I first joined a hospice program in this hospital, they just seriously focused on preparation for death. All I was told was what I should be doing which was to prepare myself and my family for my impending death. No one told me that I could survive more than two years. I can’t sue my doctor for the fact that he has provided effective cancer treatments which made me survive a lot longer than I was supposed to live. (Hoon)

I didn’t mean to make my wife’s life miserable but it turned out… it seemed like I was the reason for her unhappiness. When I was alone in my hospital room or in my room, I felt… kind of like… I missed my wife’s helping me get to the restroom. But… as soon as my wife walked into the room, we started to fight again… which made me feel even more upset. (Jo)

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I have been living with liver cancer for almost two years now. I didn’t expect… I didn’t expect that I could survive longer than one year. Yes, I survived… but I don’t feel like the miraculous survivor of a devastating cancer. I have been attending the hospice programs with my wife. During the programs, I have met many other cancer patients and their family members. At the program, I have seen many people who are living longer and more actively with a terminal stage of cancer. I think… probably… I was beginning to wonder if I had correct information as far as the time frame regarding what my doctor told me. Maybe… the time frame that my doctor told me could be wrong. Maybe I could get to live with my current cancer treatment longer than my doctor predicted. I have been witnessing so many others who are still living very actively with terminal cancer. This is very confusing. I don’t want to blindly follow with false hope but I don’t want to give up my life too hastily. (Jin)

I’ve never really told anyone about the bad feelings before; somehow I knew this was coming unexpectedly as if I was waiting for the bad news or as if I was expecting to have metastatic cancer or a recurrence. My instincts were usually right but I was hoping this time that I would be wrong. It didn’t make me so angry this time. It doesn’t mean that I have a weird death wish or will give up my life recklessly. Still, I can’t sort out my feelings about what I really want or where I should be. (Kang)

When I got promoted, I should have known this was coming. Whenever I have experienced some happy occasions or lucky things, misfortune has always followed the good things. Yes, in my experience through my whole life, the good news always came with the bad. I knew it was too good for me to get the promoted position. I should have gone a little slower when I still had a chance to look after my health instead of spending every single minute working like a dog. I got the promoted position that I have always wanted to have… but at the same time… I lost everything by being diagnosed with liver cancer. (Yul)

Ever since I lost my husband, I often felt tired for no reason. I didn’t pay attention to the symptoms including irritability and fatigue. Even though my married life wasn’t always easy and happy, I felt something was dramatically removed from my life; it was as if a piece of chewing gum which stuck to the bottom of my shoes for years was detached. In my generation, marriage wasn’t an option that I could choose. So many things have happened to me… things that I couldn’t choose. When I was first diagnosed with liver cancer, I felt relieved at the fact that my unhappiness would be over soon. Living with liver cancer... it makes my life very complicated. I am tired of asking my doctor about the details regarding the results of tests or treatment progress. I think I have been in this complicated liver cancer treatment too long. For four years I have received chemo and all possible kinds of treatment but I am still not so sure that I have made a good decision. Merely prolonging my life for more than four years makes me more miserable. (Jeong)

Realizing that I will be a better father makes me very happy. But, knowing that my time in this world will be over soon makes me profoundly sad. I’ve just learned how to become a good father… making money is important but becoming a good father is not all about money. Now, I know how to do it… but my time is running out too fast. What you might call this feeling… is bittersweetness of life. (Hong)

Hopelessness (n=16)

At night I am tossing and turning all night, more than a hundred times. I feel like my whole world is falling apart. No one in my family ever had liver cancer. That’s why I don’t trust my doctor’s diagnosis. I was watching TV the other day. Some researchers presented the results of their research … telling us about miraculous breast cancer treatment with high survival rate. But, I have heard… my kind of cancer… doesn’t bring much good research news to the patients. I feel researchers must have missed out on liver cancer research. (Tae)

I spent many nights thinking about those things. Am I dying because of the high risk job that I chose? Then how could I not choose the job that had entailed so many advantages? If I could live my life again, would I have done much better? I mean… coming to this world and being born into a poor

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family was not my choice. I’m now living just to survive. I have no hope, nothing to rely on... nothing. (Hak)

How much time will I have? Who knows? I still don’t know what kind of long-terms plan I can possibly make for my leftover future. It’s hopeless. (Whan)

When I got to know that my body didn’t feel strong any more, I was told that I had liver cancer. The doctor said that I needed to prepare myself and also my family. That was about three years ago. I feel powerless and everything seems hopeless. What is really important in my life? It is very difficult to say in one word. Living with liver cancer over three years, my heart has been filled with more and more hesitation in speaking. What hope could I keep for myself? (Mah)

When I was first diagnosed, I tried everything so desperately because the doctor told me that I had only about six months left to live. I wanted to beat this cancer so badly. People might consider me as a senile old man or demented crazy man. I have tried to do everything that may have had any effect on sparing my life. I am tired of doing this… pretending that I am getting better. I don’t see anything good about my future… even if there is a future. I don’t know much about the world after death. I became a Christian not because of my faith but because of my wife. I am not knowledgeable about the Bible or other rules to enter heaven. I am worried about things after my death. My pastor said: ‘Do not look beyond the grave. It’s out of our hands.’ What was that supposed to mean? If that’s true, why are we doing or trying all the painstaking liver cancer treatments? A bottomless sadness...makes me feel so hopeless. (Ryung)

I know that the new treatment may work for a while. The sky may not be falling on my head tonight but… something might happen anytime from anywhere. Even though I don’t have another cancer now, I don’t know how long that luck could last in my exhausted body. Every time, before the hospital admission, I think ‘this is it... it might be my last.’ Yes, I am living each day like it is my last. (Tark)

So far, I have received so much information about how to reduce my stress… how to ease my nauseous stomach. I don’t think I have more room in my brain for another frustrating thing. I am what I have lived… I am what I have done… I have no time to convert or start something new that I have never tried. I know there’s no medicine in the world that can cure liver cancer. It’s hopeless. I feel … the current cancer treatment and chemotherapy were no good. Because of the toxic smell of chemo drugs, I can’t eat or drink as much as I used to. When my condition is obviously impossible, I don’t think that it would be a good idea to keep trying more aggressive cancer treatments. At some point, I would like to ask my doctor to stop further treatments. (Hee)

I didn’t care about what kind of cancer treatments I would go through. I just prayed and prayed to the Lord to end my misery quickly and expeditiously. That’s why I refused to receive aggressive cancer treatment during my first couple of months of cancer. Still… I need convincing that the cancer treatments will make a big difference. I don’t believe that God will grant me such an unbelievable miracle. I am getting weaker… slowly fading away like a blinking, dim light bulb. (Hoon)

I was told that cancer or any type of incurable disease has a tendency to spread rather dramatically for a young adult because of the quick metabolism compared to the elderly. That’s why I gave up hope to live longer than other people with cancer in the group. When I first attended a liver cancer patients’ meeting, I was the youngest one in the group. The most recent blood tests and other test results were fine but I am still not sure if the cancer treatment will work effectively for the next six months. Obviously, it’s a hopeless fight. (Yang)

The fact that my health status will get worse as time goes by… it makes me feel hopeless. During the long-term cancer treatments over two years, I have been losing my positive energy and my hope. (Jeong)

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During the three years of liver cancer treatments, I can’t sense the taste of food. Not only my sense of taste has gone, but also my sense of smell has become strange. My daughter-in-law tried to duplicate my wife’s recipes for me. Unfortunately, my sense of taste is dull and my stomach is not as comfortable as it used to be. I feel that I am losing major bodily functions one by one. (Taek)

Yes, the results turned out that I have liver cancer. I took immediate action for liver cancer treatment but it was too late to remove all the cancer cells in the liver. Fortunately, my doctor said there was no sign of metastasis to another part of my body. But, who knows what will happen in the near future? I think it’s safe to say there is no hope for the future. (Myung)

I know… restoring my health… that’s not going to happen. To me, nothing is new in the hospital. Sometimes, I wonder… just what is going on for my next step. To what end? I am loosing hope every day. (Park)

Too many years lighting up cigarettes… finally caught up with me. For 59 years, I believe… I have run… I mean I have lived my life being very busy… so far, to get here. I have run faster than a bullet. But, I cannot run this time with the same strength… not with this… mass of liver cancer. I have a few months left to go… so I am told and I have finally decided to live on as it is. Many people, including my pastor, said that I was lucky… lucky enough to detect liver cancer at an early stage. Even though my cancer was detected in an early stage, the reality is still a liver cancer diagnosis. I am not expecting much regarding my future. My doctor told me… there are no cancer cells found in another part of my body… which was good news. But that doesn’t make this any easier. (Hong)

No one can understand what it’s like to be controlled by a situation like hell. I now feel completely hopeless. The only way to get my peaceful mind back might be to shut down my emotions. I don’t want anyone to see me crying. So I tell myself to shut down everything in my heart… worries, fears, and sadness. I wouldn’t like to show my weak emotions to anyone who is close to me. I believe you know what that’s like. The day before, my doctor told me that more cancer cells were detected in my lungs and bones. I realized…obsessing regarding more options in liver cancer treatment could make the situation worse. I was so shocked… and I doubted my ears… and I wondered if my doctor hadn’t made mistakes when he read the report. (Joong)

I know illness isn’t something that a doctor heals but… it is done by the patient. I have trusted my doctor’s skills. No matter how good his medical skills may be… I know the doctor cannot revive a dead person. And I cannot turn the time around. When the situation is obviously hopeless, I am tired of keeping up my courage. (Kyu)

Irritability (n=16)

I remember one day… I came home and saw that the light bulbs were blinking… and I saw a cobweb between the blinking light bulbs which never bothered me before… but I found that I became easily upset, raising my voice to my wife unnecessarily. Why doesn’t anyone in my family care about maintaining our house neatly? Why does everything have to wait until I get home? I am not a cleaning machine. These kind of provocative situations make me feel deflated. (Tae)

I didn’t understand why I shouldn’t just enjoy the day that I heard the good news from my doctor. He said there was no cancer found in another part of my body. I know my wife is a well-organized person who always prepares well under any circumstances and she always has a plan B, just in case the first plan doesn’t work out. My wife said, ‘Don’t get your hopes up too high. We should prepare ourselves for the worst scenario, just in case, you know.’ I know she has been the best of the best homemaker but I was extremely upset about what my wife said to my doctor that day. (Hak)

As a homemaker, I like keeping clean pillows and blankets for my family. I like sleeping under dry and crisp blankets. I am still trying to do it but it is very hard to sun dry them all every week. My

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family is living in a pigsty! My kids and my husband don’t seem to care about that. I don’t like sleeping under a non-crisp blanket. My husband says that I am overreacting. (Yeon)

When I am able to stay calm, my negative feelings are under control but with just a little pressure, like the night before a big procedure, I become extremely irritable. Recently, I feel so vulnerable and sometimes I overreact to the care team. (Mah)

Currently, my stomach is extremely sensitive to any kind of smell. One night, of course, I couldn’t sleep at all because of vomiting. A nurse came in to check my blood pressure. I barely managed to settle my upset stomach. Oh, my…my…my! The very strong smell of her hand lotion and perfume… whatever she put on… turned my stomach inside out. (Sook)

Whenever I was admitted to the hospital, the most bothering thing was the smell of water. Even though other patients didn’t notice the smell of disinfectant, the water smell made me nauseous. I couldn’t hold down any food during my hospital stay. That’s why I had to ask my wife to bring a lot of boiled barley tea from home. I made some comments about the hospital water but the care team thought that I was overreacting which made me very upset. I feel very uncomfortable to sleep in a hospital bed. Hospital sheets and blankets sometimes make me itchy. Again, I asked my wife to bring some blankets and pillows from my room at home. My doctor told me something in my blood caused the itching sense and caused me yellowish eyes. I didn’t know about that. It has been driving me crazy. (Choo)

My troubled mind is sometimes terribly tumbling down. It takes a while to come back to my senses. Who can understand my changeable feelings? When I came back to my senses, I realized it was nothing serious …I realized that I made a big fuss over small things. I felt a bitter taste about the fact that I could become dramatically hysterical. (Seong)

Once I start feeling nauseated, I can’t hold down any food. Sometimes, I have to sleep in a reclining arm chair. The smell of fried food, the smell of meat, the smell of fish, the smell of lotion, the smell of chemo medicine…any strong flavor or smell…even green mint mouthwash makes my stomach upset. I asked my wife to stop using any kind of scented soap. The minor, minor things that never bothered me before are bothering me so much now. I feel much more comfortable with cool, salt water to rinse out my mouth than green mint gargle. I didn’t realize how terribly disgusting the artificial scents were until I got cancer. The smell of shampoo, the smell of laundry detergent, the smell of dishwashing soap… I can’t take it anymore. My wife doesn’t cook many fried foods so, most of the time, she only uses a small amount of odorless soap to wash dishes. (Kyung)

Chemotherapy makes me more worn-out and nauseous than other cancer treatments. Most of the patients feel the same way. Still, I can’t get used to the chemical smell of chemo drugs. It smells like…herbicide…as if someone directly sprayed herbicide in my nose. It has been terribly irritating my stomach... and my whole body. During the first couple of years of cancer treatments, I can’t keep a balance between eating and vomiting. (Young)

Every day… I got cranky. I felt that my daily life was bothered by tiny minor things… the things had never bothered me before. For about a year, my personality became more irritable. Sometimes, I found myself venting my anger on my innocent son. To celebrate my son’s birthday this year, my husband arranged a small party for him and invited my son’s close friends for lunch. After the party, the kids wanted to play some video games and it ended up being dinner time. Of course, I love my son and his friends but I was exhausted already. I never told my son’s friends to go home but I couldn’t rest with all the noise and yelling and screaming. I love kids and I love cleaning up after their mess but, that day, I felt… I had enough. And I thought…where did my life… my golden days go? (Sun)

Eating well is a major issue that I am dealing with. Often I have had very uncomfortable feelings in my stomach… like terrible indigestion. I was beginning to think… it was not cancer that was killing me but terrible nauseous feelings that bother me so much. And the awful smell of the chemotherapy

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made me throw up all the time as if the smell was crawling all over me. A couple of days ago, I yelled at my wife. I showed a very bad temper about the long waiting time and other things… things that she had nothing to do with. After the big procedure that I had to go through… it was the day before yesterday, I had a really serious problem with eating and holding down any kind of food. I threw up all night sitting on the bathroom floor. I made a huge mess in the bathroom. My wife followed me to the bathroom and I yelled at her again to leave me alone. I shook her hand off violently and I pushed her back and I called her all kinds of names. (Yul)

I don’t like the smell of the hospital food. It wasn’t a good idea to fill my stomach right before or during the chemo treatment. Because of the disgusting combination of the memory, I have a hard time eating those foods again even though the chemo is over. Somehow, the foods that I had right before or during the chemo treatment… somehow those foods remind me of the terrible vomiting that I had to go through. I don’t think that I can eat the same foods again regardless of my stomach condition. Yes, odd combinations between chemo smell and the food smell make my stomach more upset. (Sung)

I am becoming a weak man who is startled by the things that never used to bother me before… such as thunder or a sudden noise or someone’s sharp voice or the sound of a striking clock at night. I can’t explain clearly why I am becoming more sensitive to little things… the things that used to be there all the time. Maybe it’s just me who is changing emotionally. (Gil)

One day, my 3-year-old-grandkid was visiting me. Anyway, my 3-year-old-grandkid was holding and playing with toys which made a clicking sound and a ringing bell sound and a clapping sound. Between the baby crying and the toy clicking, I couldn’t think clearly… of course, I couldn’t sleep. My headache and upset stomach got worse. I mean… I used to play with my grandkids and I loved doing babysitting. But, for some reason, the noise of baby toys and baby crying bother me…and irritate me a lot lately. That day, I had to ask my son to go home early with the baby. I love my kids and my grandkids very much but I need some space for myself. (Taek)

Transfusions or certain kinds of medicine make me itchy. Sometimes the itchy spots turn reddish or cause skin problems. Occasionally, a needle puncture site gets swollen like a pimple. I have swelling of my face and extremities here and there. I don’t think the skin problems will disappear after 1 or 2 days. I have to admit the fact that I may be going to experience more complicated symptoms as time goes on. Even though I am paying close attention to my skin problems, I know they will get worse. I know that my health status will not be restored again as it used to be. I am taking every precaution to prevent friction or pressure on the same spot of skin. In the end, it may also happen. (Noh)

I feel exhausted repeating the same thing over and over again. I feel that my personality has changed since the liver cancer diagnosis. Sometimes, I have yelled at my wife over a small thing. I wish I could take some time to think before I get angry with everyone in my family. Swelling of my face and now throughout my whole body, overly-sensitive skin… these symptoms are bothering me very much. Once I get a minor cut from shaving or a paper cut, the scarred part heals very slowly and sometimes a minor cut leads to festering of the skin. Because of the itching sign and highly sensitive skin problem, I try not to scratch the itching spot. But, during my sleep, my hands are out of control. I have tried to put on a pair of soft cotton gloves to prevent me from scratching but it made no difference. Most of the time, the following morning, I found the cotton gloves on the floor. Now the itching is the most bothersome thing in my daily life. Itching on my scalp or itching limbs… I can live with that or I can scratch whenever I want. But itching on a very sensitive part of my skin… it drives me crazy. (Park)

Frustration (n=14)

Every time I come to the hospital, I have so many questions to ask my doctor… about the information that I find on the Internet but I can’t… because I wouldn’t like to ask silly or stupid questions. Every month, I come to this hospital but I feel that I don’t get anything out of the visits. I am often frustrated over the crowded waiting room and terribly long waiting time to see my doctor at the outpatient clinic.

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Coming to the doctor’s appointment is becoming too routine for me. My doctor always asks the same questions. I could answer them without being there. I know the doctor and nurses are doing their job as fast as they can. But they don’t actually make me think anything else but routine. (Tae)

I know that I’m getting close to death’s door and I should prepare myself for that. I know that miracles are very rare but I am hoping that a new technology for liver cancer treatment could find a cure. I am still alive and I am the same person who has to worry about what to eat for supper when the sun goes down. I feel that my life is two sides of the same coin: adjusting to a new lifestyle and, at the same time, preparing to die… it’s very frustrating. The really difficult thing is not the fact that I am dying. The more serious challenge is to find the way to live… while fighting against cancer and facing death. I won’t be defeated like this… I surely won’t! Who would look after my kids and my childlike husband? I am tired of putting up with the arduous procedures. I feel like… I am running a marathon without a finish line. (Sook)

Every time I open my eyes in the hospital, I am talking to myself: I am almost there and let’s not lose my strength. I feel… the more I try to gather some strength, the more I lose some… as if some invisible power is slipping through my fingers. (Seong)

The night that I couldn’t sleep, sitting in the chair I tried to sort out my thoughts but I couldn’t clear my head. I used to think I could accomplish anything as long as I had a strong will and I didn’t give up. But, I realized for the first time that there’s something I can’t do. It’s frustrating. (Kyung)

When I was first diagnosed with liver cancer, I desperately wanted to see other patients who actually had the same stage of cancer as I had. As far as I understand, living with liver cancer is like weeding a dry field. No matter how much you try to get rid of it, the weed always comes back next spring like a coarse grass. I think living with liver cancer is just like that. It’s frustrating. (Keun)

As soon as I knew that I had cancer, I tried everything to amend my lifestyle and eating habits. I read dozens of books about dietary therapy and searched information from the websites. Since I started a vegetarian diet, I’ve felt much more clear-headed and less nauseous. But, there were no clear instructions about an effective diet for liver cancer. All I heard from my doctor was: ‘Do not eat salty foods’ and ‘Do not eat too much meat.’ Well… I am the cook at home. Naturally, most menu choices were entirely up to me. Honestly, I don’t have time or enough energy to cook two different kinds of dishes every day. (Sun)

When I visited another doctor to get a second opinion, I was so desperately denying that I might have the possibility of liver cancer. But… yes, it turned out that I had liver cancer. I wish it was just nothing but an awful and terrible dream. I prayed and prayed…every night…hoping that I would wake up from this terrible nightmare. But, I have to admit that the nightmare wasn’t fiction but it became a harsh reality from which I would never wake up. Once I wake up in the middle of the night, it is very hard to go back to sleep again. And for the rest of the night hours, many times I struggle with unanswerable questions. The inevitable truth is the fact that I am dying day by day without knowing the actual expiration date. Many times I used to ask myself: Am I more confident about the fact that I am dying…than other healthy people? I am not quite sure about that. I know that my health is not able to be restored to my original condition but is only deteriorating for sure. Knowing that I am dying…at the same time I have to continue to live. That’s a very complicated situation… and that makes me confused. I believe…living with cancer is a very uncommon crisis in human life. I was set to lose from the beginning. I don’t have many alternative choices that I can consider. And I know…there won’t be dramatic miracles in my future that I may expect or hope for. I know what I am capable of and what I am not. I wish there was another door or reset button in my life… so that I could restart my new life again. (Ae)

Some of the family support programs were somewhat helpful to ease the impact that my illness brought on my family; but that program didn’t change the fact but only showed the reality more clearly. That is what was quite cruel to everyone in my family. The fact… the reality was and is that liver cancer will never alter its own deadly schedule; this makes me feel very frustrated. (Dong)

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I feel exhausted as if I have driven a used car more extra mileage than I was supposed to. I am tired and I feel that I am broken like a dented, rattling car. If some parts of the car were broken, like a taillight or headlight, the broken piece could be replaced with a brand new one by a professional mechanic because the car has no ability to fix by itself. I can’t fix my broken body by myself. (Hoon)

I didn’t do anything wrong or harm other people. Living with liver cancer… I feel like I am climbing a mountain... the mountain will never have an ending point. It’s very frustrating. Yes, it was always like that. Fighting against cancer could be a lot like working with cynical co-workers. No matter what great achievements you accomplish, if you can’t overcome them, you will crumble. I know that I have to either overcome or run away from this scary situation. I am losing my confidence as time goes on. I don’t know how long I can sustain my energy and my confidence. (Yang)

I used to eat lots of oysters, seafood, or beef to restore my strength. After several days of my favorite foods, the flu or common cold or whatever I had was completely healed. But I can’t eat my favorite meals more frequently because of my high cholesterol. I don’t want to be obsessed with food but it’s very hard to ignore the taste… the taste of my favorite food to which I was accustomed for my entire life. I don’t like watching the food or cooking channels on TV anymore because it makes me very sad; those programs are stimulating my food-craving behavior. Yes… those food channels make me crazy. (Jin)

My motto is: A human being should be caring when one is going through hard times and admonish when things are good. But, in reality, the family motto doesn’t always serve my situation well. Usually, people have more tendencies to gloat over a rival’s failure. That’s the reality that I have to live with and put up with. It’s frustrating. (Sung)

A woman of my age with liver cancer seems like a person who is walking down death row. I feel frustrated with my doctor’s half-confident attitude towards the current cancer treatment. The most challenging thing… the most difficult thing is enduring loneliness and facing my own death at the same time. I have been living with liver cancer for almost four years now which means that I should be getting used to it. But, I still feel … that something or someone or negative Chi blocks my path. I feel that I lost my compass on the stormy seas without knowing where to go. (Jeong)

I had to watch the sunset through the window in my room. This kind of troublesome experience was not my first time. Because of the time-consuming preparation for going out, it made me more frustrated. Now, I just leave my window open until late evening. I can feel it… the air outside much fresher than the air inside the hospital. (Taek)

Feelings of Being Neglected (n=10)

I have seen many kinds of information flyers on the bulletin board and I have received dozens of information sheets. Many times I was not in a good condition to go to the program because of being nauseous and lightheaded. By the time I regained my strength, the meeting or the program was already over. I felt left behind... felt neglected. Yes, the day I was told about my illness in the hospital, I was only able to understand less than half of the conversation with my doctor. (Hoh)

On this evening, like another ordinary day, doctors and nurses came in and left and things were running. I am sure they were just trying to do their jobs accurately. But, sometimes I can’t help feeling that they are handling me like a machine without looking at my eyes. Why is everyone in the hospital doing this to me? (Seong)

I have been giving up my high expectations regarding my cancer treatments. I saw a group of care team members reporting something and other members for the next shift taking notes. They told me to wait until they finished their duty reports. Well…it could have been a minor stomach problem that I was experiencing. But, it also could have been a big problem. They should have paid attention to me more. If doctors can’t feel a patient’s pain just because the patient doesn’t know how to raise his

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voice, I think…they’re not qualified to become health care professionals. I wish they could treat a patient’s body as if it was their own. Sometimes I felt…they don’t have a sympathizing heart which can cry for me. I strongly believe…without understanding the patient’s pain, they can never become good doctors. Well…in this case, it is not always the same thing to be a good man and a caring doctor. (Jang)

I am fighting for my life and I am trying to adjust myself to uncomfortable hospital beds and meals. My husband and daughters don’t have time to cook separate food for me. I understand it must be really difficult to make the time to cook and bring the food to my hospital bed. But, it’s common knowledge that food should be consumed before medicine. Will anyone care about that for me? I doubt it. (Ae)

I was waiting for the elevator to go to the test room sitting in my wheelchair. I was very tired and felt chilly waiting in front of the elevator. Whenever the elevator door opened at the floor where I was waiting, it was already full. I don’t care how pious those pastors are or how much higher social rank they have. No one in the elevator would give me room to get in. Common folks would never be equal to the pastors until death. In the test room, I saw another patient who came into the waiting room a lot later than I did. For some reason, that patient was called in first and I had to wait and wait… until lunch time. The waiting room was a little bit cold. Later, I overheard that the doctor addressed the patient as a pastor. Well… that explained everything that I have always experienced. (Hee)

Sometimes, on TV ads or dramas, they categorize this whole chaotic situation through many types of cancer as just simply cancer patients. People respond and react differently, not because of cancer, but because of individual differences. I don’t appreciate being treated as a group…as one of the simple, insignificant cancer patient groups. I don’t like to go to a cancer patient group meeting. (Hoon)

I have been suffering from eating and sleeping and even simple walking. I am not asking for free treatment and I am paying for my cancer treatment… which means that I don’t have to beg for their mercy… which means I have every right to be treated in a decent manner. I didn’t have a higher education. I only have a high school diploma. So… I don’t know how to use difficult words or medical terms. I wish the care team could make some charts or pictures to explain easily rather than a tiny font-size information pamphlet so that we could… people like me… could understand more clearly. I didn’t actually understand what I heard from the doctor. I was tired and just wanted to sleep. (Sung)

The most bothersome thing is that most of the care team considers my symptoms to be the same as those of others. Sometimes, I have this feeling… they take my life-threatening experience too simply and describe it with few words. Even though I have been tossing around all night and I couldn’t sleep, the care team made my symptoms very simple in one word ‘insomnia’. I hope the care team members could pay closer attention to the circumstances or background as well as the manifested symptom itself. Even though the symptoms look like the same headache or sleep disturbance, there are myriad causes of those symptoms. For back pain, headache, fever, muscle pain, I have seen many cases being administered the same Tylenol. What? Tylenol is the most almighty drug or what? (Park)

Feelings of being neglected by neighbors who are supposed to care about me… it hurts me pretty bad. Probably, the neighbors didn’t realize that they were hurting my feelings. The more my illness gets serious, I feel… the more I become an invisible person. (Seon)

My sons won’t be able to come to the hospital with me when I have a big procedure because of the job interviews. I feel a little bit upset about that. But I wouldn’t blame them if they do that on purpose. They are good boys. I know that I should be happy for them… getting ready to have better positions. I can’t explain that clearly. I have the feeling of being neglected by my sons. (Joong)

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Guilty Feelings (n=9)

I gave my mom a hard time before her death. After waking up from the dream, I didn’t know what to do. Whether it was right for me to be alive and breathe when she died because of me… whether I could walk, eat, sit, or stand. I deserved to die with my mom. I have done things… something shameful to a Christian faith. (Mah)

I feel sorry for my wife who has been married to a lousy husband. I feel so sorry for my kids that I won’t be here when they need me. My wife is a good Christian who never stops showing her kindest heart to me and to my kids. My wife deserves more than this. I owe her so much; I am leaving a huge debt behind me. (Dong)

If my disease… liver cancer is a genetic thing, I would never forgive myself leaving this risk factor to my son. I won’t be able to rest in peace after my death because of the guilty feeling of passing down my bad blood to my innocent son. (Hoon)

I know exactly how others would feel about my misfortune because I have been there before. When my brothers were first diagnosed with liver disease, I had the same feelings about my brothers’ family members. I didn’t like seeing my kids hanging out for movies or eating or sharing food with my brothers’ kids. I just tried to be a good dad for my kids by protecting them from going out with other kids whose family members had liver disease. That was very inconsiderate of me. (Sung)

I sold my kids’ gold rings which were gifts for each kid’s 1st birthday celebration. The rings had a meaning and a good memory in them. Years ago, when my husband lost his job, money was very tight to support three kids. At that time, I only had a part-time job which wasn’t enough to feed all the family members. The economic crisis hit all over the city… actually, the crisis hit all over the country, so it was very hard to borrow money with our credit. So I sold my kids’ gold rings… I still feel awfully guilty about that. I know those rings had a good meaning to cherish. I know those rings were not just a piece of gold. Those rings were more expensive than simple gold. I made a promise that I would purchase the same gold rings for my kids when I earned some more money. But I haven’t had a chance to make it right because there was always some urgent need to use the saved money… such as my kid’s hospital admission or repairing a leak in the roof… or the blown transmission of the car… and so on. (Noh)

I have to say… that my finest days are gone. I feel that my last hours are upon me. I was a heavy smoker and I had some drinking problems. A part of the responsibility could be mine. (Seon)

I love my kids and my wife. They are my whole world. I could die for them. After I am gone… if something ever happened to my kids and my wife… I would never forgive myself for abandoning them like this and I would never enjoy my new life in heaven. And I did the worst thing that a father could do. I gave up on my son who was an alcoholic. One day, I yelled at him and told him to get out of my house… and I told him to get out of my life. Now, I am looking back on my life. Back then, I had never been in his life as a father. I was more like a productive machine, saving money and making money. It was mostly my fault… regarding what happened to my son in the past. (Hong)

I try not to look back on the mistakes that I made in the past. Whenever I see my wife… sleeping on a small couch in the hospital waiting room, it breaks my heart. I feel very, very sorry about the fact that I will have to leave for my final trip soon. Now I realize the mistake she made was not her fault. Most likely, it was of my making… I made her feel lonely all the time. (Joong)

Most of my kids have gotten married except for my youngest daughter. I wish I could go and help her at once if she needs me for picking out her wedding dress and planning her wedding. Instead of being with my baby girl, I am here in the hospital. My daughter had already postponed her wedding plan when I was first diagnosed with liver cancer since my doctor told me that I had 3 months left to live. It’s all my faults. But, 2 years have passed since that time. And I am still here… alive. (Kyu)

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Loss of Interest (n=9)

I have had days on which I wouldn’t like to move or eat. The days when I feel so exhausted, the simplest thing like picking up a spoon on the table… requires a great deal of strength. My grandkids are now in elementary school. I used to babysit whenever they came home after school hours. But look at me now. I can barely take care of myself and... barely manage to keep myself alive. Recently I didn’t feel like eating… my sense of taste was getting dull… half of the time in the hospital I didn’t realize what kind of food I was eating. My daughter-in-law brought some food… my favorite kind of food… but I didn’t like to take the spoon at all. For some reason, the taste of the food was not the same as the food that I had at home. In addition, oh my, the smell of disinfectant in the hospital seemed to add some funny taste to the food. (Hoh)

I was good at listening to other people’s complaints. People who had no one to talk to about the upset situation they were in… they usually came to me. But, now, I don’t like talking with people who annoy me with nasty questions. When no one cares about me... why should I care for other people’s feelings? (Yeon)

In addition, I don’t feel like going out because of my crazy, upset stomach. I don’t think that I can hold any food that my friends prepared for me. I don’t mean to be rude to my friends. There are huge issues around my image and my struggling. (Mah)

I feel hungry but I can’t eat comfortably because I throw up when I smell food that I don’t like. Yesterday, I tried to eat some soup and rice but I couldn’t hold it down. I feel as if I have a mouthful of rough sand with the tart juice of a balloon flower root. I wish my wife were here with me. I wish I could eat some nice home cooked meal. I am hungry but I don’t feel like eating. (Ryung)

I can’t open my eyes wide because of the fatigue. Sometimes I don’t like to talk to anyone in my family... especially when I am having troubles with a very sensitive stomach and headache and dizzy feeling. I am sure my wife cares about me very much. She checks up on me and comes in and out frequently. But, often I don’t feel like talking or eating. (Kyung)

Since I was diagnosed with liver cancer, I don’t feel like meeting friends or neighbors or my relatives. I know I feel lonely quite often but, at the same time, I don’t want to be bothered by their insensitive questions. But, finally when I am left alone as I wished, I couldn’t help feeling neglected. Pastors or doctors in the hospital…no one would like to confront or talk with the dying patients about where they actually are now. I don’t think anyone truly understands what I have been going through. (Keun)

I am a family decision maker and I take charge for everything… where to move out… what to prepare for thanksgiving gifts… which house to buy. I worked very hard and have been very busy. But… for 2 years… I should say for 3 years… I feel that I have not been doing anything productive. I don’t have motivation for doing anything or meeting with friends or neighbors because of the feeling of fatigue. I am barely over 60 years old now. Someone said ‘life begins at 60’ but it seems like not for me. (Dong)

I used to work very hard every day, even occasionally on weekends, as a full-time employee but now I can only help my wife move furniture sometimes or empty trash cans once a week. These household tasks were nothing… not heavy workloads at all, compared to the work that I used to do. Without any specific reason, I just can’t get going… I don’t want to do anything. (Jo)

I’ve lost my appetite and I don’t feel hungry in the morning. I mean I don’t feel like eating. I know breakfast is the most important meal of the day and it gets my batteries charged. But, the smell of any food with strong flavor in the morning makes my stomach upset. (Seon)

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Confusion (n=6)

Someone said that liver cancer can be cured and can be treated as a chronic disease. But many people say that liver cancer leads to death. I don’t know what to believe now. Can someone please tell me how long I will survive? (Sook)

At the liver cancer group meeting, the most difficult thing… the most depressing thing is the fact that most doctors seriously focus on death and dying. I have gone through more than ten books so far during the liver cancer education program. But, in my case, I am not exactly following the standard of symptoms that most of the books describe. I am so confused. I don’t know what to believe. (Yul)

Sometimes, I feel that I am losing a sense of reality. Yes, sometimes… I feel that… it’s like my late wife is about to open the door of the room, calling me with her gentle voice. When I go out for a walk in the hospital garden, I feel that my wife is with me, as if she is walking right behind me. I often see my late wife in dreams… sometimes in daydreaming… sometimes I have heard her voice calling my name very softly. It’s confusing which makes me sad. (Lim)

I have met a couple of patients in the hospice program. I did find some patients with symptoms similar to mine, but I’m not sure if they were on the same page with me. From what I heard, their problems and symptoms were too simplistic to view them as liver cancer. I didn’t feel that I was fitting in that group meeting… which made me confused. (Gil)

I hate the feeling of being isolated when I am alone in the hospital room. But, I don’t think I can take irritating noise or being surrounded by many visitors. I can’t reason out the way I feel and I can’t explain how I feel. It’s confusing. (Taek)

I’m saying there’s something strange about how the doctors are doing things. There’s no solid proof that a certain type of food aggravates cancer progression. But, doctors are giving conflicting information… like what to eat or what not to eat. It makes me very confused. (Park)

Loss of Appetite due to the Illness (n=5)

I don’t think that my appetite can be recovered as it used to be. When I try to eat some food, it hurts my mouth and tongue as if I was chewing a handful of coarse sand. I am worried because I burp too often and the burping smell is bothering me. Yes, because of so many reasons, I’ve lost my appetite. I don’t think that my stomach can handle rough food or strong flavor or spicy food anymore. I don’t think…I can eat comfortably the deep-fried food that I liked. (Sun)

To hold on until the next cancer treatment, I have to eat well and strengthen my body. But my problem is that I can’t hold down any kind of high nutritional food because it makes me terribly nauseous. I’ve been searching the books to find a way… how I can make my stomach comfortable. I know that I need a well-balanced nutrition during the cancer treatment. But I don’t like most types of meat except beef which makes a huge limitation in the choice of a meal menu in the hospital. (Ae)

My wife was very worried about my being depressed without a significant reason. She thought that I didn’t seem to be eating much at all those days. Yes, I lost my appetite dramatically… yes, that’s true. I don’t want to be craving food or obsessed with a dietary health supplement all the time. I wish there were some other ways to provide necessary nutrition rather than eating three meals a day. (Dong)

I am trying to save some strength for my next cancer treatment. But the problem is that I can’t eat the food or drink that I used to like. Whenever the chemo is over, I feel that I have passed the most difficult task. Sometimes, I don’t really understand why I have to go through this… my life journey in my 60s… with this terrible cancer. (Yul)

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I couldn’t take a bite at all. My wife prepared other snacks. I’m not sure what the problem is. I’m hungry but I feel nauseous whenever I see the food. I’m sure I wouldn’t feel that way if my mother prepared the food… the food that I had as a boy whenever I was not feeling well. My parents passed away a long time ago. So, eating my mother’s food… that’s not going to happen. I think something is missing with hospital food. Don’t you agree? (Sung)

Worthlessness (n=5)

The current economy has been hitting a brick wall. I had to file for bankruptcy to control damages. Now, I have more... even plenty of time to spend with my family... seems like the kids are all grown up and don’t need my help anymore. When I found out about the cancer, I had to quit my job because I couldn’t keep moving around with heavy physical workloads from city to city. It was my birthday when my son called which was really nice and it was very thoughtful of him but, honestly, it didn’t really do anything for me. I don’t think it made me feel any better about what was going on. I am very proud of my son and I am happy for him that he found his job quickly after college. Ironically, his success has not made any significant impact on my situation. Whenever he talks to me on the phone, he is very busy and I feel that my current cancer treatments aren’t that important for his career development. (Tae)

Most of the time when I am at the hospital, my wife is with me. But I have to tell you. I feel lonely even though she is right beside me. Sometimes, I was annoyed by the sound of the TV that other patients were watching and enjoying so much. I feel like… I am leftover cold cooked rice. I realize an invisible line between the patients who are worthy and the patients who are worthless. I was wondering ... What are they so happy about? What’s so funny? What’s all this laughing about? I feel worthless and unloved. (Hak)

I have been working for this company for nearly 10 years. I worked so hard just like an ant. I had to work extra hours almost every day to finish my assigned workload. Ever since being diagnosed with liver cancer, I have been feeling so obsolete and I feel like… I feel like I am no more than a broken machine. (Yeon)

My son also told me that I should stop fixing the wall of the house and the roof. I have to admit that my work may not be as good as the professional worker but I am still able to do that. But, no one agreed with me. I am sure my son cares for me very much and he speaks out of love. But… since the cancer diagnosis… doing nothing at home makes me feel so pathetic and worthless. (Ryung)

I wish I could help my wife more with the housework but I don’t think that I can continue helping her. Now, my kids are trying to help out with some house chores instead of me… which is good. But, it makes me feel obsolete. (Seon)

Denial (n=5)

Living with liver cancer requires a great deal of patience about things I don’t know. I know that I have to fight against cancer… that’s for sure. But I didn’t know how long I had to fight and I still don’t know about that. Arduous fighting, not knowing how long it will take… which makes me feel that I have trouble keeping my mind straight on what I am doing. Blindly following the doctor’s advice... ignoring the obvious reality... this is like Ostrich’s belief of saving itself from scary situations by keeping its small head covered inside a hole, leaving its huge body outside. I still can’t believe that I am a cancer patient. Living with liver cancer…this isn’t happening to me! (Hoon)

The first time I was told that my illness could be related to liver cancer, I was very, very angry with my doctor. How dare the doctor even think about me as a liver cancer patient! I didn’t like that my doctor recommended me for further detailed examinations. I thought my doctor was just overreacting about my simple chronic fatigue. I have seen very similar cases on the TV news that doctors’ overtreatments of patients have been one of the biggest issues in many hospitals. I didn’t want to pay 223

for unnecessary, redundant tests out of my pocket. But the doctor’s hunch was right… I was diagnosed with liver cancer. The bad news made me embarrassed. The awful news made me fall into low spirits. The day I was informed of the bad news, I felt like I had been robbed in broad daylight, as if someone hit my head from the back. I still can’t believe that I have liver cancer. (Jo)

I have a full-time job and I am still working as if nothing has happened in my life. When I get a reminder call from the hospital regarding my cancer treatments, then I realize the fact that I was diagnosed with liver cancer about one and a half years ago. Why does it have to be me? I have been asking this question so many times... which makes me so devastated. Ever since the liver cancer diagnosis, I haven’t had a big change in my routine except hospital visits. At work, after a cycle of chemotherapy, I was a little bit tired but it was just another day in the office as usual. I have been living a lot longer than I was told by my doctor… which makes me wonder if the initial diagnosis was correct. I honestly don’t know what I am doing here in the hospital… I should be at work. (Yang)

When I first went to the doctor’s office, I persisted in denying the fact that my symptoms and the results of blood tests were indicating liver cancer. I didn’t look back and I was very angry with the doctor who told me that the results could be cancer-related. I thought… the feelings of being tired and lethargy were just a normal grieving process after I lost my wife. I only saw what I wanted to see. (Taek)

I don’t want to quit my job right now. The monthly salary is important but it’s not all about the money that I am earning. The reason I don’t quit my full-time job is… that I can forget everything while I am busy at work. And, the more important reason is that… a full-time job makes me feel alive and less lonely. As long as I have some strength to carry on, I would like to keep my full-time job until I absolutely have to quit. I know, at some point, I have to stop working and I have to focus on wrapping up my life so that I can really arrange and prepare myself. But, not just yet! (Seon)

Suicidal Thoughts (n=4)

I tried to kill myself by drinking a bottle of pesticide. When I woke up, I was in the hospital emergency room and my daughter was there holding my hand. (Mah)

I was up all night thinking. Next morning, I talked to my wife about the fact that I found out my diagnosis. Her reaction was still and calm. Yes, my wife already knew that… she knew all about my disease. I told my wife to give up on me or I would end my life. (Choo)

To save everyone from complicated troubles, sometimes… I would like to make this long-term cancer treatment shorter by giving up myself. (Myung)

For three years, living with liver cancer… it makes me worn out. More than a dozen times, I thought and talked to myself: ‘Let’s end this. Not just for me; for everyone.’ (Seon)

Problems Remembering Details (n=4)

To make it worse, I forgot to put in the key ingredient for Kimbap. My kids and grandkids said nothing about the change of the taste. I found the key ingredient on the kitchen table after they left for the school picnic. I have had my moments of forgetting something... but those were very different from this time. I was standing in the kitchen... staring at the key ingredient on the table. I can’t explain why that particular episode is still bothering me so much… until now. (Hoh)

Sometimes I forget about seasons’ changing. I forgot my wife’s birthday this year. I just waited until her friends called and asked me if we had plans to go out for dinner. I was too worn out taking care of my symptoms…. vomiting… dizziness. I was too tired to worry about my wife’s birthday. I needed to take a nap… and when I woke up… I completely forgot about that. It was already too late to go out. (Kap) 224

Recently, my memory is having some trouble remembering a certain word or a person’s name. One day, I picked up my cell phone to call someone… someone who was important to edit a family history book but I totally forgot what I was supposed to say. And I kept thinking and thinking and saying hello and asking for him… exchanging greetings but I couldn’t remember why I called him in the first place. It made me very upset. (Hak)

I admit that I have a troubled mind. Sometimes, I forget why I opened the refrigerator… what I was looking for. (Jeong)

Problems Making Decisions (n=2)

After barely finishing moving a couple of small tables, I had to sit down to catch my breath. Well... I shouldn’t have made a grand plan. I shouldn’t have started things that I couldn’t possibly finish. Yes, I was disappointed again. When I am discharged from the hospital, I will make a more realistic plan for that. Will it be OK? I don’t know for sure since my blood tests are not consistent. I can’t know how things are moving along. I don’t know what else to do... I don’t know. My doctor suggested to me that I should take another chemo cycle. My doctor knows well what I will be gaining or losing if I agree with his plan. But, I haven’t decided yet. I need some time to think over the new chemo plan. (Park)

Because of my upset stomach, one day my wife brought some Chinese herbal medicine. I thought… the situation couldn’t get any worse and why not try every alternative method. But, on second thought… I didn’t want the new trial to make things any worse than they already were. I couldn’t take a risk since those Chinese herbal remedies are not scientifically proven. I just don’t know what to do. (Seon)

Loneliness (n=2)

The scars from the procedure should fade over time. But I think the pain of the mind will grow progressively harder as more time goes by. I hate to say that… but I have to admit… I feel that the loneliness has deepened as time passes, regardless of the effect of the cancer treatments. (Jeong)

I miss my wife’s cooking and the comforting food that she used to make for me. I don’t expect that my daughter-in-law could duplicate my wife’s wonderful recipes… like exactly the way my wife used to cook. When I am alone in the hospital room, I miss my late wife so much. (Taek)

Feeling of Being Humiliated (n=1)

I know… God didn’t make this misery and God doesn’t make errors so I should not attempt to make a deal with God regarding any circumstances. Indirectly, according to the pastor’s wise advice, I should stop accusing God for bringing liver cancer into my life. I’ve never, ever even tried to accuse God of giving me liver cancer. My cries and what I meant and what I said… were those things that you just say and that didn’t mean that I was actually against God’s will. Even though the pastor couldn’t see me behind the white screen, I felt terribly humiliated. (Kang)

Feeling of Being Ignored (n=1)

Many doctors or nurses have tried to teach me or correct my errors. Even at the education program for liver cancer patients, I am tired of being treated as one of them or as a group. I know what I am doing and I know what I should or should not do. I know what I have learned at the liver cancer counseling program. I feel that…most doctors and nurses love using difficult terms so that no one actually would go against their authority. I am speaking one language and they are speaking a completely different language that I couldn’t possibly understand. I am the only one in the group who actually has a

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college degree. If I can’t understand what the doctors and nurses are saying at the program, I highly doubt that anyone can understand. (Kang)

Insomnia (n=1)

At night, I don’t sleep well. I don’t like sleeping in a hospital bed. When I sleep in a hospital bed, I experience very bad back pain. It takes time to sit up and to recognize the time: Is it day or night? (Sun)

Problems Concentrating (n=1)

Before I retired from my promising job, I had a great focus and many skills. Since the cancer diagnosis, my focus has been lacking and my mind has been more troubled. My doctor suggested to me that I should go to counseling but I refused to go to see a psychiatrist. I am not depressed. I don’t have a mental health problem. What I need is a person who can sincerely listen to my current status … but it isn’t easy to find a good listener who would strictly keep the secret. (Joong)

Spiritual Distress-related Themes

Fear (n=21)

I was diagnosed with liver cancer about one and a half years ago at a regular check-up. When I was first diagnosed with liver cancer, it was a huge adjustment in every way regarding our lifestyle. For the first six months of my fighting cancer, I lived as if I only had today without expecting tomorrow’s coming because my doctor told me that I had about six months to live. Since the day I was diagnosed with liver cancer, I have been scared to death about the cancer treatments. I often have a very bad nightmare. I don’t remember the detail when I wake up. (Hak)

The other thing that is disturbing me is fear… fear of the world after death. Lots of people are afraid and I don’t know what to say about that. I did not fit in this world very well. Would the world after death be different from this world? (Yeon)

I had heard people in the hospital talking about disfigurement and amputated body parts because of the spread of the cancer, unrelenting fatigue, and terrible side effects of chemotherapy or other treatments. I was really scared to death about the fact I may have to go through that kind of unavoidable fate. If I may ask for God’s mercy, I would like to ask for a peaceful death during my sleep. From my past experience, in my struggling fragile body, the anticipated fear of pain at my last moment would be greater than death itself. (Mah)

I am not afraid of death. What I am afraid of is the fact…what if I have to die alone without saying a word when my kids are not around or when they are asleep. When my time comes, I don’t think that I could stay calm. I don’t think that I could accept my fate without feelings even though I am old and have lived a tenacious life. I am also a human being with a fragile mind before I am a strong father. I wish I could remain as a good father who has a strong will. But, I am actually getting tired of hiding my fear. Yes, I am afraid of dying alone. (Ryung)

One night I was so sad… I cried my eyes out. Nothing happened over that night. I try not to feel too bad about my death. But… still… when I hear about or watch someone’s death… even in a TV drama… it makes me feel beaten to the ground. I feel my heart just freeze. Yesterday night, I heard that… one patient who was two doors down… he died of cancer. And I heard his family crying so sadly. I woke up because of the noise and the scream chilled me to the bone. I couldn’t go back to sleep. (Tark)

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When I had a terrible nightmare, I couldn’t move my legs. If it wasn’t for my wife, I wouldn’t be able to wake up or come back to life again. A nurse came and checked my blood pressure but the nurse didn’t check or talk to me to see if I had trouble coming back to my senses. I was terrified. (Seong)

I am not saying that I am so ready to make a big step to the new journey. Unlike what the hospice book says, the physical or emotional thing is less important to think about now. I am actually more anxious about what happens after death. I am still concerned: what if nothing happens after this life…what if there is nothing existing at the end of the world…what if the whole resurrection thing is merely fiction? Sometimes my thoughts are tumbling up and down like a crazy roller coaster. I am afraid of not living anymore. Yes, I am afraid of death. (Young)

Sometimes, during my sleep…I have a nightmare. Often, I wake up startled by my own screaming. I don’t remember most of my dreams. But I remember that I am clearly terrified by something…some unknown thing. Even though I am finally able to wake up, I am soaked in sweat and my heart is beating very fast. I feel…hear some humming sound as if a tiny mosquito is flying right in my ears. The annoying, humming sound usually comes with dizzy spells. Another thing that bothers me is…that I am afraid that my fear might be coming back dramatically. It’s scary. I don’t want to go back to the moment when I was so panicked for no reason. I don’t want to make any new friends during my hospital stay…, especially new friends with terminal cancer, because I am trying to run away from the word ‘cancer’. I am terribly scared of using the word ‘death’ or ‘dying’. I am running away from my reality as if I drive the maximum speed limit on the highway…without knowing a safe direction to go. (Jang)

I saw a hospice program posted on the information board and other self-help group meetings in the hospital. Even though I know that I need some help, I wouldn’t like to go there. I don’t feel comfortable listening to serious stories from other patients who are in a terminal cancer stage. I would feel more lonely and scared if I were in the group because my current condition is a lot different from theirs. Honestly, I am scared to see my reality through other terminal cancer patients. (Keun)

I have heard… the patient in the next room had many complications and combined illnesses over a long period of fighting cancer. Her critical condition makes me think a lot of things. The drying up of blood and fluids… it may be… it will surely be my problem soon….without exception. (Sun)

Between the intensive cancer treatments, I hardly was able to keep my head straight. These kinds of constant worries and fears just come and go more than a dozen times a day. That’s so scary… knowing that I am going to die soon without having an expected time or date for that. I feel frozen from the top of my head all the way down to the very last toe. Those are pretty scary feelings. Probably that’s what I am worrying about the most now. What if some unexpected things happen in the life after death? What if no one is around you when you wake up in another world? I wouldn’t like to be surprised by certain things that I have never prepared for during my lifetime here. That would be really fearful mess. (Dong)

I tried to suppress the nauseous feeling. I found that rapid breathing was helpful to ease my upset stomach. Well… I must have been hyperventilating intentionally to suppress vomiting. I had spasms in my arms and fingers. I couldn’t open my clenched fist and I couldn’t move my arms. The last thing I remember was… I thought that the light in my room was blinking and finally blacked out. Yes, I passed out. I thought I was going to die. It was frightening. To make it worse, I had a nosebleed which was quite a frightening thing. I felt that I bled so much and I felt it was several hours until the nurses returned to my room with a blood transfusion kit. My wife was very scared watching the massive bleeding. I thought I was going to die for sure and I didn’t think that I would see the sunrise next morning. The stained spots of nosebleed were all over me… and my blanket and pillow and clothes. Yes, I was very much frightened. After the platelet transfusions, I felt a little bit chilly and cold. I felt… every single drop of the transfusions. When the drops of the transfusions were dripping, I felt the cold drops were falling onto my arm. I couldn’t even get up by myself until the transfusions were over because of the odd, chilly feeling. The unstoppable nosebleed must be a huge loss for a guy like me who is thin and of small stature. I thought I was going to die in a very dramatic way…

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covered with blood. I couldn’t breathe comfortably between bleeding and the nose packing. Yes, I am afraid that I am going to die of fear before anything else. Another thing… what makes me frightened is… I see and hear a lot of people coming to the hospital because of the H1N1 flu vaccination. I asked my doctor what could happen if a person like me caught a serious flu like H1N1. My doctor said it could be very dangerous to every patient in the hospital, especially cancer patients like me. So my doctor told me not to go down to the main lobby to see the Christmas concert. My doctor also is worried about the fact that many visitors are showing flu-like symptoms. I am worried about that, too. I watched the news telling me that a famous actor’s 5-year-old son’s sudden death was due to the H1N1 flu. I think I could die of some unexpected cause which has nothing to do with liver cancer. I am not afraid that I will lose hair and I will gain more freckles on my face. What I am really afraid of is… what if I am losing my mind and becoming more violent to my wife and kids, using abusive words. I hope that ugly picture will never happen until death takes me away. I really do hope not. I was… I still am… very much scared of… the fact that I am dying. Ever since I was diagnosed with liver cancer, I was scared of opening the mailbox because I didn’t want to find more sad news. (Jin)

I feel that I must do something to prepare for the future… the future that may or may not be granted to me. I don’t want to be surprised by the things that I didn’t anticipate. The CT results came back yesterday telling me that they found another suspicious spot nearby the previous cancer spot which had been taken care of by injecting some sort of chemo drugs. I had a very bad feeling and I already knew this was coming. The bad news makes me so devastated. I can’t sleep well. I wake up so many times throughout the night. Yes, I am terrified... scared like hell. (Kang)

I was so scared to open the door of the doctor’s office. I couldn’t even tell my wife that I was going back to the doctor’s office to see the results. The doctor ordered more detailed examinations and he told me that I should be accompanied by one of my family members because the general anesthesia could be risky for a person like me who showed signs of problematic liver functioning. Living with liver cancer is like receiving a death sentence. (Sung)

My doctor told me… that… he found more cancer in another parts of my body. I wish I could tell a lie to my kids. I thought I was not afraid of getting close to death’s door. But, when my doctor finally delivered the bad news, I was astonished… actually petrified. Living with a terminal stage of liver cancer is like watching a time bomb. Sometimes, I am afraid of the fact that the axing headache may remain until my last moment. If so, that would be very frightening. I know it may not be easy at all. I also know it’s not going to get easier but only worse. I wish there was another way to face death… without experiencing terrible pain… I mean physically and emotionally. When I have barely managed to fall asleep, often I see wild waves…a small island… in my dreams… three days in row. The more I try to swim to get to the small island, the more the small island moves far away from me. I can’t remember very well what happens next, but it seems that I am in danger. It could be just nothing to worry about. It’s not just about facing the reality… the fact that I am dying. It is about a huge fear of the unknown journey that I have to sail off to alone. (Lim)

I was one of the manly men in the family. For my entire life of 51 years, I never got scared or afraid of certain things. After the cancer diagnosis, often I wake up at night in the middle of a nightmare… sweating, screaming, or talking complete nonsense. Sometimes, I see myself in my dream trying to hold onto a thin rope on the cliff. No one can understanding the feeling trapped in situations I can’t escape from. Living with liver cancer... what’s obvious is that cancer is no stranger to me. It’s dreadful, it’s fearful. After waking up from the nightmare, I just can’t shake it off because I looked very dangerous in the nightmare most of the time. I used to console others who had terrible nightmares. And I told them we normally dream opposite of what might happen. I didn’t really understand how terribly disturbing the nightmares were until I put my foot in the same shoe. Having a nightmare makes me feel bad and it makes me so scared. (Gil)

An upset stomach was the least of my problems when I accidently bit my tongue. The fear of watching bleeding was greater than the bleeding itself. I thought I was going to die because of the unstoppable bleeding. The doctor came and stitched the bleeding part and ran a blood test. My wife

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used a box of Kleenex tissues and her fingers were covered with my blood. After the bleeding stopped, I had a funny taste and that funny taste lasted several more days. Yes, it was a frightening day. (Jong)

One early morning, I wasn’t feeling well. I was about to leave my house for the hospital and I was trying to lock the main entrance. It was dark and freezing and windy. My fingers went numb. I just kept trying to find the keyhole to lock the door. For some reason, the key got stuck in the keyhole and I couldn’t take the key out or turn it. Next thing I heard was the window breaking with a crash and the key was broken in two pieces. I felt someone or something was standing behind me. I felt someone or something was breathing down my neck. I was so scared and I couldn’t turn around to see if there was someone or something actually behind me. When I finally turned around and looked, no one was there. All the things that happened that morning could have been just a big coincidence or I was daydreaming… like in one of the horror movies. If my last day in this world comes like that dreadful episode that I experienced that morning, I don’t think that I can handle it alone. I don’t want to go to sleep in a dark room so usually I leave all the lights turned on. I wake up many times at night and I have a hard time going back to sleep again. So I watch TV or listen to the radio or sometimes I clean and organize my closet or go through photo albums. I know it sounds crazy… but, sometimes I feel that someone is standing at my door at night. Clearly, the status of my Chi is getting weaker and getting clouded by unknown fear. The problem is… that I don’t have power to decide on my last journey. I hate the fact that my unwanted visitor, death, is squirming in places I don’t know about. The fact that I can’t control the date or time of my last moment in this world makes me scared. (Jeong)

I terribly underestimated my symptoms. Yes, I was wrong… I was an idiot who failed to see that a huge, freezing blizzard was about to come through me like a snowstorm. I didn’t realize that I was standing in the eye of a snowstorm. (Myung)

I’m more worried about one of the patient’s theory in the hospice program… the theory that most terminal cancer patients eventually end up in intensive care units, living with… actually surrounded by medical devices until they die. I am very much afraid of that. (Hong)

I thought I completely emptied the concerns in my heart but they keep coming back and bothering me. I know this won’t be ending until I close my eyes in eternity. Perhaps, in order to remove the fear of death, I might have to remove my heart first. (Joong)

Anguish (n=16)

That night, I woke up many times. Lying on the hospital bed... facing the white wall of the room gave me a terribly cold feeling. I know that a tiny piece of wood splint on my finger nail could be more painful and miserable than a wood spike on other people’s hands. (Hoh)

It is very, very difficult for me to separate from my family. I am… very sorry that I have to leave my family soon. After repeating countless eternities…will I ever see them again in my next life? (Choi)

When I heard that I was going to die soon, I begged and begged my doctor to save my life. And I went to the Buddhist temple to pray… to beg. I said my prayer to Buddha. I will do anything you say… I will accept any punishment. I didn’t realize how long I was standing in the temple. I realized that I was doing one hundred and eight bows so desperately. My legs and arms went numb. I had no sense or feeling about the fact that I was in the temple with other people. (Whan)

Well… I am not a man of many words. My wife went for some dry towels and I looked at her back. Suddenly I felt something choked up in my neck… yes, I was crying. Before she came back, I washed my face again and again to hide my tears. Last week, the night before my hospital admission, I watched my kids sleeping and I tucked them in and I stroked their heads. I don’t know. What was I thinking? I couldn’t stop crying. I tried not to wake my wife so I cried and cried, covering my mouth.

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My wife found me crying and she said: ‘If I’m not going to live with you, then I’ll go with you.’ That makes me so sad and breaks my heart into pieces. (Choo)

Picturing my funeral and my wife and my kids crying at the funeral makes me so painful. I can’t stop crying even when picturing that. Yes, I should consider it lucky that God didn’t just take me in the freezing winter. My wife and kids do not deserve this. If my life would be taken away during this chilly winter, I won’t forgive those who let it happen to me. I won’t even if it is God’s work. The fact is…in the end…I have to leave all my lovely kids behind and walk to the new door. I know that I have to put my worries and concerns in God’s merciful hands. I know that finally I have to do that. But, whenever I try to do that, I am having trouble saying my prayers and I just keep mumbling and rambling…repeating…complaining of unfairness. (Seong)

Living with liver cancer…… this is like a whole set of the most complicated things in the world. Many times, I think...let’s stop doing this painful thing. It’s excruciating. (Jang)

After the hospital visiting hours were up, I was thoroughly absent-minded for a while. There is really not much more I could ask for the rest of my life. I’ve always wanted to see my former fiancée once before I die. I should have been very happy to see her finally…but I am in a very sad situation. I can’t taste food anymore because my sense of taste is getting worse. In addition, the emotional bitterness makes the taste of food much bitterer. I told my doctor that I couldn’t eat much food recently because of the choking feeling whenever I tried to eat something. I know my doctor can’t do anything about the illness of the heart…the emotional thing. I know that I have to be strong of heart. But, when I wake up alone at night, I can’t stop crying…regretting my life. I have been so hard on other people’s mistakes… including my former fiancée. (Keun)

Until my last moment, as long as I’m alive, I must be a strong mountain for my son. Once I’m dead, his tears will soak his pillow. It’s very sad to just picture my son going to sleep at night and waking up in the morning without mom’s caring hands. It seems to me that I may have to leave when my son most needs me. How could I not know his struggles as his mom? My son may be too young to understand about life and death for now. He might have no idea what was deep inside my heart. I don’t want to scare my son by emphasizing the impending death. If I were not sure how to explain about life and death, my baby boy would be more confused and messed up. (Sun)

I quit drinking about 2 and half years ago when I was first diagnosed with liver cancer. But it was very hard to endure the extremely stressful situation without having a drink. Many nights, I just can’t fall asleep without a drink…… because I can’t take this situation sober. I know I shouldn’t live like this… the life given to me as an extra gift from God. (Dong)

For a long time, I was so sure that my problem was my business. I thought there was no need to beg to get some help from other people. I cried so many nights during my evening prayers. But, next morning, I had to be strong again. I mean... I had to pretend that I was not a weak old man in front of my family. I am not comfortable with expressing my true feelings to my family or friends because I wasn’t raised like that. Sometimes, I wake up in the middle of the night looking at my wife sleeping beside me… and I open the door to see my son… standing at his room for a while. Well… here I am… here I am. My wife and my son probably didn’t know that I had so many nights of suffering and crying. Before I came to the hospital this time, I spent a lot of time going through my things… standing in my storage room which brought back a lot of memories attached to those things… some things were birthday gifts from my son and my wife. I had a very hard time cleaning them out. I just couldn’t do that because I was very much overwhelmed with so many happy memories related to those gifts that I had received. When I saw my wife crying… it just broke my heart as if I was doing some horrible thing to her. One night, I woke up in the middle of the night, again, sweating excessively. I thought I was going to die of uncontrolled fever. I felt something was burning up in my heart. And a nurse came and checked the temperature but the temperature was normal. The nurse gave me a tissue to hold in my hands. The nurse said, the excessive sweating was not about my temperature but it could be about my emotional or spiritual pain. I finally burst into tears like a baby. The nurse stayed at my bedside until I was able to stop crying. When I talked to my pastor about the deal that I

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made with God, his answer was very strict by telling me that God wouldn’t work like that and God wouldn’t accept man-made deals. Well… I was so embarrassed by his reactions. I was so sad and disappointed…… to be exact, he made me so scared. Probably, I shouldn’t have told him about the deal that I made with God. I am dying anyway... at least I wanted to do something good for my son. Is this too much, to ask God for a favor? (Hoon)

The doctor said that I may not be able to see next spring which means that I have only three or four months left to live. My kids are still very young. I feel like I am failing my family. I feel like I am abandoning my responsibilities as a father. I wish I could see my kids enter college. But, that would be too greedy to expect for someone like me. I can’t bear to think that I won’t be able to see my kids growing up… it makes me so sad… it breaks my heart. After several times in the hospital, I became more depressed because of what my doctor told me. I know he was telling the truth about my current progress but sometimes I wish the doctor could lie just to make me feel better. This is the reality that I have to face and live with and die with. I became more and more speechless and I noticed something was not right in my mind. I have never seriously cried in public places or in front of my wife or kids. In a hospital waiting room lying down on the gurney… waiting for my turn for a big procedure, I was watching big lamps above me and my memories of 49 years of life flashed back like quick film cuts. I couldn’t stop crying and I felt so sorry about my whole life...about the fact that I didn’t pay attention to my own health when I still had time to fix it. (Yang)

I think I am getting more adjusted to my new lifestyle. So far, I think I have been doing OK. When I was at work during the week days, working very busily, I was able to forget everything related the cancer progress. But… when I am alone and when I have lots of free time, I feel so panicked again and my anguish sometimes become very dramatic… very often I feel… off the chart levels of panic that are striking my head until I can’t breathe. In the middle of confession at church, I started crying and I mumbled and I had a really hard time finish my confession list. I just couldn’t stop crying. Yes, I confessed everything that I had on my chest…about what has been bothering me for a while. But that confession didn’t go very well. What I meant was that I needed someone who could actually listen to my side of the story without judging me to be right or wrong. Well… the pastor wasn’t quite a good listener and he intercepted every sentence that I said. Finding a good listener isn’t easy. I need someone who can sit by me without criticizing my thoughts. (Kang)

I haven’t seen my significant person for a long time since we went our separate ways. In my dream yesterday, she was wearing a navy blue coat which was my favorite color. I was old in the dream but she looked the same… young and witty… exactly the same as the day when we decided to take different paths. She was in her blue winter coat holding a bag full of medicine and she said that she also wasn’t feeling well. Yes, I must have missed her so much and I must still have some feelings for her… the kind of feelings that I shouldn’t verbalize. For a while after I took my separate path, when I went shopping, many times I bought the wrong size clothes for my wife because, for many years, I was used to picking out an extra small size of clothes for the significant person whom I loved. When I woke up this morning, I couldn’t stop crying. (Yul)

I have worked very hard for my entire life for my family. My kids are still young. The most difficult thing to bear in my heart is the fact that I haven’t had a chance to hug them as a father. But, now, living with liver cancer, I am trying to be more realistic and cautious by washing my hands twice and by putting on a surgical mask when I hold and hug my kids. I don’t want any of my kids to suffer like me. How could anyone understand my anguish? Whenever I remind myself that I am a dying liver cancer patient, I feel that my heart grew like a hot coal. Because I’m living with liver cancer, because it can’t be possible to survive more than five years, it is a more desperate thing to find how to live well until I actually die. (Gil)

I thought my wife and I would be together all the time. And I thought we would leave this world on the same day and at the same time. The concept of death never occurred to me. I didn’t… and we didn’t think that one of us could be departing this world for heaven separately. I have been attending many funeral services but I had never thought that it could happen to one of us. In addition, living with liver cancer... I feel a severe pain in my heart as if someone is piercing my heart to the core with

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a hundred and more aching pangs. One day I fell asleep holding my wife’s picture in my hand. Yes, I was very disappointed by the results of a blood test and CT and the fact that I couldn’t think or plan anything a week ahead of time. I was tired of reading the Bible and I was tired of asking others for more prayers. I feel everything around me is losing vitality. Clearly, my troubled mind makes it impossible for me to say my evening prayer. Every night, I cry and cry until I fall asleep. (Taek)

I am sure my husband will be good at taking care of three kids after I am gone. My husband is the man I trust. He’s trustworthy. But, thinking of the fact that I have to leave all things, including concerns about my kids, that makes me very painful. I mean, the pain… the emotional pain in my heart is greater than the fear of death itself. (Noh)

Emptiness (n=12)

When I was little girl, whenever I heard someone’s obituary, especially the elderly I had known, I thought they had lived their full lives. But... now, I don’t get the same consolation. I am asking myself. Have I lived my full life? What’s left in my hands after all those terrible efforts to hold my family together by putting up with my old man’s mean personality? Is this the reward I get? How long do I have to go through this? To what end? (Hoh)

Some days, I feel more confident than others and I have actually developed some self-management skills. But, most of the days in the hospital, I feel that I am losing my life gradually…day by day. It wasn’t my choice that I came into this world. Working like a dog and enduring unfair suffering for my entire life, for whose benefit exactly? I can’t find any joy in day-to-day treatments. Will anyone remember me after I am gone? I saw that when one of the patients died in the morning, no longer than a half of the day later, the same hospital bed was filled with a new patient. Will this be happening on my last day of life? (Kap)

Whether I will stop fighting cancer… it seems like… it won’t matter for my family. Even if I stop trying… it won’t matter for my grandkids. Probably a few of them will remember my face and they may only have a vague image of me. Recently, I am beginning to think...over and over. Am I going to vanish in vain? Am I going to disappear into thin air? (Whan)

No one could live forever… that’s the truth… inevitable truth. My kids and grandkids will move on and continue living their busy days after I am gone. Many people at my funeral will say ‘a propitious mourning of a person dying old.’ Will anyone weep bitterly for me? Will anyone remember the trail of my life? (Ryung)

I thought and thought all night. I am not scared of looking at the reality… like facing… facing human mortality. As for me, isn’t what remains to be done more important? My mind traveled several hundred times between the last river of this world and death’s door. Human lives… human lives… how empty they could be! (Tark)

Since the cancer diagnosis, I have been feeling empty in my daily life. I don’t know what to do during most of my free time. (Young)

I am aware that my illness is a critical condition… and I know hurrying doesn’t heal the illness. Whenever I had an impossible situation regarding my kids or my marriage, I always took some time to examine the problem carefully. But, I think… and wonder if I have enough or extra time to wait. How long am I going to wait patiently, looking for some solutions? What is left in my hands? I know there’s no time for that right now… there’s no next time for practice… there’s no going back. (Ae)

I wish I had some on-off switch in my head to shut myself down. Everything that I had and pursued was nothing worth comparing with my life. I am losing my life. I have nothing. I have just realized that… but it’s too late. There’s no way to set my clock back 41 years, the moment when I was carefree and happy. (Hee)

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My wife and I had nothing in common. We weren’t supposed to be together because we couldn’t work out many things… we were like oil and water. That’s why I generally hated my marriage. That’s why I gave her a hard time by drinking and smoking and gambling. Although I got married, most nights, I used to sleep in the living room drinking and drinking until I passed out. Nothing works in my life. (Jo)

I thought that there was always time to complete my unfinished tasks. I wish I had known earlier about the fact that there may not be another time to achieve my dream. Life could be a lot shorter than I thought. Now, I have to face the reality in front of me. There won’t be a long-term plan about what to do for the rest of my life. I have no future. I’ve never pictured my death like this. I thought it would be better to burn out at once than fade away gradually. I think no matter how we live our lives, there isn’t much difference. Every dog has his day and every man has his golden hour. I think my golden hour is fading away. (Yul)

Since my wife died of a massive stroke, my daily life has had no meaning. Yes, after my wife’s funeral, I felt that all meaning was gone. The feelings of total emptiness were different than I had ever experienced… as if all the stars had fallen out of the sky… the feeling of emptiness have stayed deep in my heart since the cancer diagnosis. (Lim)

At that time… even though I knew that I had liver cancer, going to my work helped me get through. I had no problem carrying on my job and social activities. After my retirement last year, I feel that I am losing everything that I have cared for my entire life… my career, my friends, and my family. Clearly, these kinds of depressing thoughts are clouding my mind. (Joong)

Negative Karma (n=11)

I didn’t do anything wrong. I swear that I didn’t do anything harmful to other people. I have heard that you will reap the whirlwind if you sow the wind. Ask anybody, I am like one outside the law. I have been asking myself a thousand times. Have I done something evil? Why does this have to happen to me? Why me? I am still not convinced of the fact that I deserve to get cancer. I must have done something really, really terribly wrong to other people in my previous life. I think…what has happened to me might be associated with Karma: what goes around comes around. (Kap)

For some special days, I go to a Buddhist temple to light a lotus lantern and pray for my family’s health. But I am not the kind of man who goes to the temple every week. I am not a serious believer. Once, or at most three times a year, I used to go to the temple. I think… what you get is what you pay for. Once I returned to my routine life, I wasn’t quite carefully living as a Buddhist. So I ate a lot of meat. I have heard that… most sincere Buddhists think that eating meat brings bad luck. The people around me, my environment, and my disease could be all affected by Karma. As a result of Karma, I must be suffering from liver cancer. In my previous life, I probably… must have lived my life so badly. (Hak)

Two days ago, my doctor told me that my liver function test and other blood tests turned out OK. The exciting news made me happy for several hours. And then I thought… what are we going to do now? What will come next? How much will I be suffering? I feel that I was born into an ill-fated life with bad Karma. Over the repeated treatments, I have been completely used up like a vapid beer and I have thought about the fact that my destiny probably is meant to be suffering. I was too hard on other people that I met. I feel…I am the one who brought disaster on my life. I feel… feel that all of my past is flooding back to haunt me…all sort of quick film cuts showing a whirl of confusion and my sleep is getting more and more restless. (Choi)

What’s in my blood was not my fault. I feel that I am only causing my kids trouble on my last path. I hope my illness or whatever bad thing is in my blood won’t be passed down to my kids and my grandkids. In order to protect my kids, by taking bad Karma with me to the grave, I hope to break a cycle of bad Karma running in my family. (Ryung)

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I have never been a sincere Buddhist. I still don’t know how to recite the Buddhist prayers properly. It could be that my strength and patience are not good enough…or luck doesn’t follow… or at times I may have to put everything on the line. I am not going to beg or make a lame excuse to save my life. I don’t want to make a clumsy excuse because my current painful experiences may be the consequences of some of my previous bad Karma. (Jang)

But, there are big differences between an unwanted pregnancy and liver cancer. During my second engagement, I was pregnant but we both knew that we weren’t ready to have a baby. I was so scared of having a baby as a student and so was my husband. I am not saying that I am proud of what I have done. What I am trying to say is… at least, in the case of abortion, I had control and I could make a decision about what to do. After that devastating experience, I became more fearless and I thought that I could handle any kind of crisis. However, living with liver cancer is such an uncontrollable thing. Now, I feel like that I am paying for what I have done. Living with liver cancer is as if someone’s accusing me of my wrongdoing or my past conduct as if someone is telling me that I definitely deserve to have cancer. I don’t think that I deserve to ask for free forgiveness… considering what I have done in the past. What I have done in the past may cause what is in the making with my present sufferings. (Hee)

I didn’t do wrong. Probably, I must have done some terrible things during my previous life… considering the fact that I am dying of the worst kind of cancer in the world. (Jo)

I don’t think my life has been blessed. A part of my current sufferings could be related to the results of my previous life. My brothers and I have the same liver disease. Think about those multiple cancer patients in one family tree… how great shock that is! Many things have happened beyond my capability to change. My wife is the only kind person who has supported and cared about me without blaming the tough life I was born into. (Sung)

I didn’t totally believe what my husband told me about Chi and Yin-Yang. Now, I am beginning to think… and agree with what he said to me about how the human body can get re-energized by positive Chi... and how we can circulate the negative energy out of our bodies before we get really, really sick. Even though I didn’t always love my husband, I have felt that half of my universe has gone to the ground along with my husband’s death. I can’t reasonably explain this kind of worn-out feeling. I feel…one of my defense barriers has been seriously damaged, physically and emotionally, since my husband’s funeral. I think that’s why I have this liver cancer. So at this point… I feel all these treatments are meaningless. Just what kind of relationship do I have with this deadly illness? Just what have I done in my previous life to get liver cancer? What on earth have I ever done something wrong to other people? I am not blaming anyone but myself and my fate given by the Divine Creator. (Jeong)

Considering the fact that I am dying of liver cancer in my early 50s, I must have done some unforgivable things in my previous life. (Noh)

My grandparents died of strokes. My parents also died of strokes. I am suffering from the worst kind of cancer in the world and I am dying. My opinion may be unfounded but, I have my reasons to believe that bad Karma runs in the family. (Seon)

Punishment from God (n=11)

My wife and kids have been my only happiness in my unfortunate life. I wish I had a strong power to fight against this kind of unreasonable punishment from God. (Choi)

I could be the victim here. I am the good person who has obeyed the law honestly and I am the good person who has paid tax regularly. I believe that I have been living my life with complete sincerity. I think I deserve more than this. Have I done something wrong? Is this some sort of punishment? (Yeon)

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I do not wish to interfere in God’s work. I am not questioning God’s power, but I would like to ask… if all human beings go to heaven by repenting of their sins… regardless of what they have done… why did God send us here in the first place? Why did God allow liver cancer to hold me for ransom? What am I supposed to be learning from all of this pain and suffering from the cancer? (Sook)

God shouldn’t be going to end my life this way…never…never. I can’t change things now. God’s irreversible judgment may have already been made. I don’t know for sure what’s going to happen to me after death. Actually, I am very much afraid that God will punish me after I die for all the sins I have committed. Dying of liver cancer may be the start of the punishment. (Seong)

Many people at church treat me like a leper…like a horrible man punished by God’s justice. My past that I lived for a long time is an obvious drag on my present life. Some choices that I made in the past were ethically…morally wrong. During my liver cancer treatment, I thought that my current humiliation could be the consequences of my past conduct. Living with liver cancer feels like I am being punished by God for my dishonest, double life that I had lived for a long time. No one will shed tears for me. Very often I feel that people are very unfriendly when I have tried to participate in church activities…because my past conduct created some trouble in our church. Many people criticized my bold attitude behind my back. In the past, the truth is…I was a really arrogant and egocentrically selfish man. I know I don’t deserve sympathy from other parishioners. Feelings of being neglected or alone even at the church…it could be just a self-inflicted loneliness. I know... I have to stop walking on eggshells if I really want to be a part of the church activities. (Young)

I know that cancer or incurable disease can happen to anyone. When I saw a TV drama, people who were diagnosed with cancer often said it could be a punishment from God. I thought those stories were too much dramatized and exaggerated or those patients had an extremely weak mind. What a terrible coincidence! I feel exactly the same way now. I think that I am being punished by God for my life, being a Christian in name only, and being involved in a little side track business. (Hoon)

During my 60 years of living in this world, I didn’t do anyone harm. I simply walked my path and I came to this point. I have endured again… and again and I persevered again and again no matter how terribly unfair the situation I had to put up with. Now I can’t endure nor can I persevere any more. I can’t endure the fact that I’ve never fought back my unfair destiny from the beginning of my life. What did I do? Just what did I do wrong to deserve this cancer? Living with liver cancer could be another punishment from heaven... just like many other obstacles that I had to overcome or live with. (Jo)

Why is this happening to me? Am I being punished by God because of my past behavior? Is this some sort of warning from God? I am deeply troubled emotionally and spiritually. (Kang)

In the case of my brothers, I understand a little bit why they were diagnosed with liver cancer since they enjoyed drinking very much. But, in my case, I am not a heavy drinker… I am… I was more like a social drinker. That’s what puzzles me very much. I feel that I am being overly punished by the Divine Creator. Many things happened in my life during the last two years. Most of the things happened to me… I don’t understand why it has to be me. (Sung)

Probably God already gave me a clue that I might have an early stage of liver cancer but I didn’t listen to a warning signal. I used to be a heavy smoker and I loved going to a bar and drinking with friends or co-workers. I was almost a regular customer at the bar. I even made a promise to God about quitting smoking but every time it was very hard to quit altogether. I couldn’t keep my promise longer than a few days. I had kept some cigarettes in several of my stash boxes… here and there. And now, I guess I’m paying the price for lying to God. (Gil)

When I was first diagnosed with liver cancer, I was wondering… I was anxious to know how long I could survive. I just wanted to know for sure how many months I had left to live. A guy who got a death sentence like me would be more devastated than anyone else. So I went to a fortune teller to divine my fate; I was aware that I made a wrong decision… now I am facing the consequences. At

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that time, I only saw what I wanted to see. I only listened to what I wanted to hear. Now I have to answer to God about my wrongdoing as a Christian. That’s what I am afraid of the most. (Hong)

Unfairness (n=9)

I have seen a lot of cases where evil people are living longer and becoming filthy rich. Life is not fair… just not fair. Don’t I deserve more than that? If there is a God, shouldn’t God be judging people with a fairer standard? God must not have double-checked the list of names who should be punished or who should be spared. This is the reason why I am feeling still uneasy about my current sufferings. (Choi)

Even as a child, I had never talked back to my parents or teachers. Just watch the news! People aren’t born thieves or criminals from the beginning. Mean people make them thieves and criminals. What the heck kind of world is this? Isn’t the evil spirit supposed to take away the wicked first? (Yeon)

I have built up a wall around me since I lost my only… beloved wife at my young age. I was probably that way because I was trying to hide my pain and fear. But a father of four kids must be able to step beyond that. When I was told that I had liver cancer, I couldn’t understand why I had to go through that kind of painful thing again. Ever since my wife died, my whole life was painful. Every single day, I have been living in grief. Why did God choose me for this? This is not fair. (Ryung)

On my birthday, some of our neighbors stopped by. They are the meanest and the most disgusting creatures that the Divine Creator has ever dropped on earth. Where are all the evil spirits? They should have taken those wicked people away first… before they came to me. Why did it have to be me? Wasn’t losing a wife enough? Why did I have to be cursed by cancer? That’s what has bothered me so much. It seems to me… cancer did not leave me much choice that I could take. Someday, death will make a visit without forewarning regardless of what I have done. I want to know; at least, I would like to have some clue. Why is God doing this to me? Have I done something wrong? What should I do now? What now? It’s just not fair… too unfair. (Tark)

Regrettably, as far as fighting against liver cancer, God didn’t even have the affection to give me a second chance. Have I ever talked back to God’s will? This is what I get? What about other people who live happily without obeying God’s will? I am someone who should be pitied by God. I don’t deserve this. (Seong)

Life is such an unfair marathon. I know a man who is a slippery, slimy con man. A man like him is the root of all social evils. Obviously it was he who deserved to be punished by an incurable disease, not me. I had said to him, ‘Sure! Let’s see who wins in the end. As long as I am alive, I will try again and again to restore the business.’ But…all of sudden…I got this…the most terrible cancer in the world… liver cancer. What a ridiculous and unfair thing I have! It’s just not fair at all. (Jang)

My pastor and my wife were the ones who recommended to me that I give away or rearrange my things. I don’t want to blame innocent persons like them. I know it’s not my place to judge. Whose life was more worthwhile than others? That homeless guy sitting at the subway station and sleeping on the street seemed… that he didn’t have a good motivation to live. On the other hand, I do have full motivation to continue to live. Something’s not fair... what is God’s will or intention through my whole life? I am seriously beginning to wonder about that. (Dong)

Unlike other liver cancer patients, I don’t have family members who died of liver disease. That’s what makes me puzzled. This is not fair. (Park) We came into this world, born into different family backgrounds and we live with different occupations. With the various ways of living… people are living as rich, poor, with promising jobs, homeless, happy, unhappy, healthy, or in bad health. I think my life is not fair. I think my life is not as good as others. Actually, I have been complaining about my fate. I had to take heavy responsibility for my family as a young boy who lost his father. Because of the countless kinds of unfairness, one

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thing that is equal for everyone, one equal gift given by God to everyone, I believe that is death. It’s pretty straightforward. We all are living in an unfair world until death makes everyone equal. (Hong)

Purposelessness (n=7)

Several days ago, I went to a Buddhist temple for prayer. I can’t recall anything that happened at the temple and what I heard from the Buddhist priest. I must have been in a daze. My wife was with me at the temple. I didn’t know who I was or where I was going. Between those hectic schedules and treatments, I had no peace in my heart. (Kap)

I am thinking of myself as the setting sun. Whenever I stand on my rooftop and watch the sunset, it makes me very sad and I think my life is fading… fading in vain. I was wondering…if there is any real purpose for my life. It is not just because of my being hurt as a child…but because there is nothing special in my life. (Whan)

I’m going to fight…I’m going to try to fight to the death. I feel so angry with other people who are living healthy and happy without any problems. I hate them a lot. Although my parents raised me to forgive and forget others’ faults, it was very hard to forgive certain people’s nasty behavior. Still…I don’t understand the true meaning of justice in this world. My life in this world for 56 years… what is the purpose of my life? (Kyung)

I don’t think my life has had a consistent aim or direction. I would like to think that my life has been both a challenge and confusing…but not too weird. There is no right or wrong answer about what the meaning of life is. And then... what now? I probably never will be able to find the right answer for that. Probably, the thing is… God created us and the purpose of life. God gave me a smart enough brain to know that every life has a purpose but he didn’t hand the answer over to me directly about what the purpose of life is. That’s why we will never know the true purpose of life until we face God. (Sun)

I found that my Buddhist grandmother who had a generous heart was a hundred times better than those so-called Christians who had stone faces. Two fiancés… they are what made my life so miserable… they are what made me a failure and a loser… if I could blame anyone. Living with liver cancer has made me think and reflect on my past. I am a failure as a woman… a loser as a human being. (Hee)

I have worked hard and now I deserve to spend some time for myself. That’s why I quit my promising job… the promoted position that any Ivy League graduate would envy. When I got promoted to the position, pretty much the same time I was diagnosed with liver cancer. I always thought I had more time to achieve my dream. I always thought: ‘Let’s finish up and take this risky job for my kids’ college funds and I’ll do something for my dream later.’ But, tomorrow may not come to me anymore. I feel the futility of life. (Yul)

I hope that I can just accept the reality that is left on my path. I am still trying to understand God’s will on my dying path. What is the purpose of this? Is there anything meaningful attached to my life? I hope it doesn’t take too long to find some answers… well… it shouldn’t. At least, I would like to know a glimpse of the answer. (Hong)

Unresolved Forgiveness (n=7)

I am still carrying too much weight of anger and hatred around my neck. Whenever I thought of someone, I felt nothing but hatred for the evil attacker. I may be consumed by my hatred of the evil man. I should have solved this problem when I had enough time. I understand this in my head but it’s very hard to practice what I understand. I am still angry with him. (Kyung)

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I don’t usually show my grief or tears in a public place because it would be against Korean culture. But, the image of a young father made me cry. I cried like a cry baby. It was unstoppable crying. The MRI team had to stop in the middle of the test because of my crying spells. I believe that my father could have been a happy father at some point in his life. I would like to believe that he wasn’t always mean and scary. I think of him a lot lately. I never had a chance to reconcile with my father. When my father died years ago, my wife stayed at his deathbed but I couldn’t come home on time. Although I don’t have many happy memories of my father, the fact that I wasn’t there for my father when he passed away has been a lifelong regret. My mother said he asked for me until the moment he died. I hated my father for what he had done to my mother, my sisters, and me. My father and I never had a chance to get to know each other. About two weeks ago, when I was waiting for my turn for an MRI in the waiting room, I saw a young father cuddling his son, whispering soothing lullabies into the baby’s ears. I watched the young father and his son for a long time until my name was called. There were so many other people waiting their turn. The lovely image of the young father and the son drew my attention and the rest of the people in the waiting room seemed to be out of my focus. During the whole time of the MRI, I thought of the young father. I became a father when I was about the young father’s age and so did my father. I was so angry at my dad. It was arrogant for me to decide to take revenge against my father by ruining myself through a dissolute life. (Young)

During my first year of the cancer treatments, I made my wife’s life a hell. I gave my wife a terribly hard time by yelling at her without any reason and by throwing pillows and by overturning the dinner table. I have done such terrible things to my wife. Every time I had a chemo schedule, I became more agitated. I complained about every food or snack that my wife brought to the table. I really want to apologize to my wife about my behavior for the last three years. I haven’t had a chance to do it because bringing those subjects up would be highly embarrassing for me. (Jo)

My insensitive behaviors were so shameful! How could I seek forgiveness from my brothers and their family members with such an attitude! I didn’t mean to be rude or disown our family ties. My wife, on the other hand, was the only one who showed her kindness to my brothers’ family members under any circumstances… no matter how seriously my brothers’ appearances were terribly yellowish and dark. I know that my brothers and their family members will understand my past indiscreet behaviors in the end. I hope this is the only thing for which I need to be forgiven by my brothers. I don’t exactly remember what the past serious conversations between my brothers and me were. (Sung)

I gave my wife a hard time. I must have been too hard on her. You don’t know how many time I wanted to say sorry to my late wife. But it’s too late to ask her forgiveness. Will she forgive me when I meet her again in heaven? (Taek)

I didn’t want to hear medical advice from my doctor. God has granted me three times longer than I had expected. I feel so sorry for my wife. I feel so sorry about my past behavior that was not honest and not faithful to my wife. I literally betrayed my wife’s trust by seeing another woman. Figuratively speaking, I bit the hand that fed me. I only stayed in a marriage to protect my career not for my wife. I stayed in a marriage to protect my career not for my wife. Will you forgive me? (Myung)

When my wife is with me, I feel less anxious about everything that I have to go through in the hospital. My wife is small and thin. I made her life very difficult by marrying her. My wife almost died during the delivery. That’s right… I was afraid of being blamed for discontinuing my family name rather than protecting my wife’s life. I was afraid of going against my parents’ will. Even if it was a traditional thing…a long time ago, it was true that I was not brave enough to protect my wife. If there is someone of whom I need to ask forgiveness… it’s only my wife. I feel sorry for my wife because I didn’t respectfully treat her as an equal. (Park)

Feelings of Being Abandoned by God (n=5)

I am dying day by day… that’s an undeniable fact. But, I am also a living and breathing man who is willing to fight against cancer until I actually be dead. The moment when I was diagnosed with cancer,

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my destiny was altered significantly in another different direction by God compared with other healthy persons’ journeys which was protected by God. (Dong)

For the last five years, I have been going through all kinds of cancer treatments. It was a little after my 60th birthday when I found… I was told that I had liver cancer and it was impossible to do surgery. I was so disappointed that God didn’t care for me as much as God has cared for other people. That made me so frustrated, realizing that not many things were left to look forward to in my future days left to live. (Hoon)

I don’t think it would help me to find solace by attending a specific church. I am dying with no hope. If there was a God who existed during my cancer treatment or during my past life, I would have been less frustrated and less confused. I am not going to beg God to spare my life. I know it’s way too late to do it. My wife… she is a strong, young woman who has a gentle and loving heart. I’m very much worried about her. Will she be all right without me? My worries and concerns make me more stressed. I feel like someone or something keeps blocking my path. I feel lost. I have been abandoned by God... in the middle of a dark forest surrounded by a huge mountain range. (Yang)

I have been an honest and hard worker and a good provider for my family. I go to church every Sunday and make generous donations to charity. What more do I have to do? I am very angry and mad at God who doesn’t seem to listen to my prayers. (Kang)

I thought my life would be different from others. I thought I could make a big change in the place where I was working and the place where I lived. I feel that the Divine Creator sent me to live in this world and He used me and now He throws me away like a piece of trash. I have talent… I still have many things to offer… I am not trash. Why do I have to disappear from this world like this? I am facing impending death and I can feel it. I know that there is not enough time allowed me. That makes me so sad. (Joong)

Loss of Connectedness to God (n=5)

What do I need to do for God to grant my request? I keep praying. But I didn’t get much of a comforting feeling by doing that. One night, I shouted out: ‘Lord, just tell me what to do. I’ll do whatever you tell me to do.’ I am not asking for miracles. Will anyone listen to my crying or prayer? I feel that I am alone…even in the chapel during the Sunday worship service. (Seong)

The patient I met at the hospital church often shared his cancer fighting experience with me. Some of his dilemmas were very similar to my concerns. The more I have tried to get close to God by going to church and prayer group meetings, the more I have lost my faith in God. I am walking zigzag on the unknown road. Yes, my footprints are very insecure, doubting what would happen after my death. (Young)

I used to think that I could do anything as long as I have time… as long as I do not give up… as long as I have faith the size of a mustard seed in God. The most difficult thing is that I can’t control my death date or time. My doctor told me that I had about six months left to live. In spite of my doctor’s scientific assumption, I have been living twice as long as the expiration dates. I often wonder if I have lived my life in accordance with God’s will. I doubt it. (Sun)

I became a Catholic not by my choice but by marriage. Prayers and church activities were considered just a part of social gatherings in my life. I had never practiced my religious beliefs in my actual daily life. I met my husband at church and I met most of my close friends at church. Even though I am trying to attend Sunday Mass, it’s very hard to kneel down or stand up quickly because my knees and ankles are not quite as comfortable as they used to be. During Mass, I had to put on and off my jacket because I had a fever and cold sweat with chilly feelings. I had never thought seriously about the relationship between God and me. (Ae)

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So I set my goal… my very short-term goal for six months without telling anyone… not even to my family. I don’t believe in God… so I am not expecting to see a dramatic miracle through my cancer treatments. I don’t go to church but I feel… I definitely need some help from someone who is close to God. Many times, I feel that I am left alone on a very rough, gravel road in bare feet. At this point in time, it feels like I am disappearing gradually… like I’m nobody. (Jo)

Loss of Connectedness to Someone or Something (n=4)

I wish I could go to the spa more often but I don’t have the same physical strength as I used to have. A couple of friends of mine who are living as neighbors asked me to go out for lunch. But, I was too tired to get ready for that. I had to decline their invitation. I don’t want to show my unwashed and unshampooed image to others. (Mah)

Strangely, the Bible doesn’t say much about liver cancer patients. No one gives me a straight answer about how to live with liver cancer, facing up to the reality. I am not running away from reality. I don’t necessarily need an extra set of eyes which would highlight the certainty of death. What I do need is someone who really cares for me... someone who supports me in anything I want to do. (Sook)

My wife was everything in my life. Nothing lasts in my life. If my wife were alive, she could have given me her endless lecture. I miss her nagging at me whenever I got dead drunk. When my wife died a long time ago, I couldn’t stop crying… I cried my heart out. I became more and more drunk and spent more days passed out. Now, I am alone. I feel lonely quite often. Every time I come back home from the hospital, I am so tired from loneliness and emptiness. We never had enough money and I never gave her good clothes or shoes. (Tark)

Even when I am surrounded by the people at church, I feel lonely. Most people that I met at the church annoyed me by asking very sensitive questions that I wouldn’t like to answer. I feel more lonely and miserable after the Sunday worship service. I can’t explain my feeling reasonably but it’s true. Many times in their thoughtless prayer, they have treated me as a pathetic patient who is on death row. (Seong)

Concerns (n=4)

When my wife died, I promised that I would not leave, no matter what happened… before my youngest kid’s wedding. My youngest kid is still too young to settle down in marriage and I can’t force him because I want to see his wedding before I die. I still feel uneasy because of the fact that I may have to leave before my youngest son meets his right girl. (Lim)

My son will have to support the family once I die. My wife is not the kind of woman who has the strong ability to maintain her livelihood. My wife has a gentle heart so she doesn’t say mean things or offensive words… more likely she is unable to say ‘no’ on most occasions. My wife is a homemaker and she is great at cooking and working at home. I am very much concerned about my wife. (Jong)

Ever since my cancer diagnosis, I have been worrying about my kids and my wife because of the fact that I can’t protect all of them anymore. You know that… in our culture… a widow or fatherless children are still looked down upon by everyone. That thought has been bothering me so much. (Hong)

Now, I am worrying that my wife might get hurt because of my illness. I am taking extra caution to not share the food and dishes that I am using. If I had known that liver cancer treatments get this perilous, I would have let her go. (Joong)

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Bargaining with God (n=4)

Whenever I think of a personal relationship with God, I am choked with tears. Sometimes, I have cried and cried until my voice is gone. When I was first diagnosed with liver cancer, I asked God to spare my life at least one more year. I pleaded with God not to take my life away because I needed more time to prepare myself. That was the deal that I made with God. (Young)

My cynical parents said all liver cancer medicines prove useless. Whenever my parents visit me in the hospital, I feel so stressful. The goal of my life which I have cared about so much is becoming my burden. I have always wanted to become a good scholar working with students. My life wasn’t supposed to disappear like this. If I have one more year to live, I would definitely look for a teaching job to fulfill my goal. I wouldn’t be so obsessed with cancer treatments. A few years ago, I had a very short period of teaching experience which remains as my fondest memory in my whole life. If God would grant me 1 more year to live, I would do anything what God commands me to do. (Hee)

I talked to my pastor about what was bothering me… regarding the genetic thing. I prayed and prayed to make a deal with God to save my innocent son’s future by taking my life earlier. My wife is depending on my son very much. After I am gone, my son will be the only hope left for my wife. I am anxiously waiting for my turn… my time… when God finally calls my name. I feel the longer I suffer… the more seriously I suffer… there might be a possibility to reduce the amount of pain that my family should experience. I talked to my pastor about the deal that I made with God in my prayer that I would gladly go through any kind of suffering and pain for my son’s future path. I also said my prayer that I would consider my current sufferings as some sort of deposit for my family. I hope, as much as I suffer, my family would receive reimbursement with many more blessings in their future. (Hoon)

I don’t know how to know God’s will. I am not familiar with the church words and I don’t have much knowledge about the prayer words. At least, by complying with my wife’s lifelong dream, I would like to compensate for her wounded heart living with me. Going to the church where my wife has been attending for a long time… I would do it gladly for my wife! By doing so, I may be granted some extra years to live from God. Who knows? (Jo)

Feelings of Being Abandoned by Someone (n=1)

I know there was a time that I spoke irrationally, giving my daughters conflicting messages. Yesterday morning, I even vomited the little soup I had taken… so I sent my daughter immediately to call in a doctor. On that morning, my daughter just stopped by quickly on her way to work. She was just at my bedside and didn’t expect to hear yelling from me. I knew she had to leave for work and I understood her situation. But when I am left alone in the hospital room in the middle of a very upsetting situation, I feel that I am an unappreciated dying woman…. dying alone. What else is new? (Ae)

Feeling Betrayed by God (n=1)

I am still learning through the past mistakes I made. I learned one important thing… parents are not always infallible. My parents just wanted me to settle down with someone who had a higher social rank than I had. Yes, that was one of the main reasons that I broke up with my fiancé. That was the beginning of my tragedy. I feel like I have been betrayed by my parents. Living with liver cancer... I feel like God has betrayed me. I feel I have given everything to God and He betrayed me. (Hee)

Feeling Betrayed by Someone (n=1)

There were many things which were inconsistent… things and feelings. First of all, the moment when I heard about liver cancer, I absolutely accepted everything that my doctor said to me by joining a 241

hospice program in order to prepare my death. But, I became less and less patient about the hospice program. I became more skeptical about what my doctor had told me because I didn’t exactly go through the same stages or symptoms as other patients did. Honestly, I feel betrayed by other patients that I met in the hospice program because I put so much trust in what they told me and the stories they shared with me. Yes, finally, they all beat me, one by one… by leaving me here alone. So many times, I also feel betrayed by the information that I have learned from a TV health education program and data in the newspaper I have read every day. (Hoon)

Loss of Trust in God (n=1)

When I was first admitted in this hospital, I saw a pastor visiting patients. I saw the pastor praying for each patient individually. I didn’t quite understand his prayer but what I overheard was pathetically pleading and asking for miracles. I was terribly disturbed by that. Hmm…miracles…what kind of miraculous spirit could blindly follow the pastor’s order? I don’t believe that my prayers cause God to act one way or another. I don’t believe that my prayers cause God to intervene. The pastor looked at me and asked if I needed any help or prayer. Well… the prayer he said for me may have been more a burden than a help. The day I met the pastor, I didn’t look forward to receiving a death certificate. The pastor’s big words made me frustrated… not to mention his booming voice. Bottom line is I don’t trust God anymore. (Kap)

Other Negative Themes

Regret (n=31)

I have the tendency to readily believe what I have heard from others about the miraculous effects of herbs or foods. I don’t want to show my ridiculous side of character to my wife. I admit that I made some choices... the choices I am not particularly proud of. My wife still doesn’t know about the terrible mistakes that I made in my past. I intend to keep it that way. (Tae)

I wish I had never met my husband. I wish I had never gotten married. I know it sounds heartless but I wouldn’t like to seek or meet my old man after my death. Meeting him and my marriage were my biggest mistakes in my whole life. I love my kids and my grandkids but not the man I married. My mom died of unknown causes when I was a little girl. I have been blaming my mom for leaving me alone in this troubled world. That’s why I got married at a young age. It was not a good idea to use marriage as an alternative or supplement to the employment careers. I believed that the man that I married would provide a strong fence to protect me... holding my kids safely... and building me a sweet home. Yes, my husband was a good financial provider... but there were so many women problems with which he got involved. It was apparent that marriage served not so much as an escape hatch from my childhood unhappiness. (Hoh)

My priority always was about my work. Almost every day, I came home very late… sometimes past midnight… going to Karaoke, drinking, celebrating someone else’s birthday. It was so stupid of me to behave like that. My wife has a kind heart… she never complained about that. I am just not quite used to expressing myself or my feelings. Also, I am not used to asking help from others. That’s why I have a tendency to bottle up my distress or pain until it explodes. I have never thought about the need to reflect on my life. I am not very good at venting repressed emotions. I feel like this long-time- coming stress must have been bottled up inside and this could be the reason I got cancer. My time is running out and will be over soon. (Kap)

One day, I was very tired. When I got home, I asked my wife to make a comforting meal. I ate it and drank a lot of tea but I still was not feeling well for a week. That was very unusual for me. I thought that I was just getting old and it was just the natural process of aging. Certainly, I hated people overreacting about a minor problem. Well… at that time, either I was too brave or I was too stupid. I guess those symptoms could have been the beginning of liver cancer. Another thing is… if I had been

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aware of the fact that I could live longer than one year, I would have enjoyed my life a lot more… rather than counting the days left for me. I wish we could plan and go on a family trip or travel abroad. When almost one year passed living with cancer, I was beginning to regret the fact that I didn’t set up a long-term goal. I have always treated people fairly and I believe that I have done my good deed for the poor and for people in need. But, I am still dying even though I have shown kindness to others. In order not to get caught by cancer, what could I have done? Not take a high risk job? or Not smoke? or Not get married so as to avoid having a financial burden? (Hak)

I talked to my boss about the possibility of occupational disease. But she told me very strictly there was no occupational hazard found in this company’s manufacturing line. If I would keep filing complaints or spreading the rumors, she would report my disturbing behavior to the superior to fire me. And then, about 5 years later, finally… I was diagnosed with liver cancer. I regret the fact that I didn’t file any formal complaint regarding my symptoms. Now, no evidence to prove it… the symptoms could be related to my disease. I was too shortsighted and stupid. (Yeon)

Stupidly enough, I had ignored the pre-existing symptoms to save money. That was so silly of me. My wife yelled at me so many times. I should have stopped being silly. I was overconfident in my health status. I should have seen a doctor before the symptom developed into something really, really serious. Yes, my wife was right about that but I didn’t listen to her. (Whan)

I am going to quit my job next month. I don’t think I can carry on both working a full-time job and fighting against cancer. I wish I could have quit my job earlier… at the moment when I wasn’t feeling the same strength. If I had known earlier, I would have quit my job right away to save some strength. (Sook)

I regret the fact that I have only been in the same village all my life. My doctor said the cancer in my body didn’t invade or spread quickly to other parts. I regret that I didn’t see the reality earlier. Someone said dried persimmon leaves or herb mushroom tea would be helpful for me. So I drank lots of tea made of those ingredients instead of drinking plain water. I regret that I didn’t tell my doctor about what I was doing. I think those things might have affected my blood tests. If I discussed about that, he would have said no. (Ryung)

If I weren’t so stubborn about quitting drinking, my last… it wouldn’t have been so pitiful like this. I should have listened to my wife. I brought misfortune upon myself and I invited disaster. I realize what my faults are… but it’s too late to restore everything the way it used to be. I brought it on myself. (Tark)

I never said thank you to my wife for the support that she gave me during cancer treatments. When I get home, I’ll cook many delicious dishes for my wife. I’ll do the things that I wasn’t able to do for her before. I don’t think I have much time left to live. Why didn’t I think of spending more quality time with her? Why didn’t I think about that before? (Choo)

I relied on my wife very much because she was the only one in the family who was patient. I feel so sorry for the trouble I have caused my wife. It was probably very hard for my wife after she went through her menopause. I know that I have a bad temper. During the night I had watched her to see if she would go elsewhere, turning away from me. I regret that I was being hard on her as a husband. (Seong)

In the past, my life was literally a prodigal son. I gave a lot of terrible grief to my family. It was a constantly moving situation because of my job…that situation made me not want to settle down in one place permanently. I used to live like a fluctuating buoy. At that time, my father was very ill so my wife had to stay in our hometown to look after my dying father. I wish I had had a nurturing childhood and a normal father-son relationship like other kids. (Young)

Being a computer guy was a lonely job. At my workplace, I didn’t enjoy much about my life. Clearly…job was job…nothing more than that. I was a little bit tired after my working hours. But,

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one day I realized it was really hard to drag my tired feet to come home. At that time, I didn’t know that I had cancer... I didn’t pay attention to it. (Keun)

Unfortunately, my husband and I were not in good shape financially. I picked up as many extra working hours or the night shift as I possibly could. I didn’t pay attention to my health at all. But I didn’t pay much attention to my own meals. Many times I just used to fill up my hungry stomach without thinking of nutritional balance. As a result, I recklessly bet my own life to make more money for my son’s college education… that brought great damage to my body. How ridiculously blind I was! I regret that every day. I wish I could express my caring heart more often to my son. I wish I could compliment my son more often. I wish I could hug him more often. I regret that I treated him so tough and gave him a hard time because I wanted him to be more independent. Because of delayed hospital admission and treatment… over a year of receiving a strong dose of cancer treatment, my eyes have gotten bad, too. I think I have grown weak from menopause. I ignored the early stage of cancer symptoms so many times. It is I who am to blame. (Sun)

I am dying. How could my mother-in-law expect me to do more chores like cooking, cleaning, or laundry for my husband? I’m sick and tired of being accused of being a lazy housewife. For certain, things regarding my mother-in-law’s nasty nagging I have to let go. I have dedicated my whole life to raising the family and serving my parents-in-law. My late father-in-law had been ill quite some time… for almost ten years. It was my duty to look after him; at the same time I had three kids. I was very tired and every day I had to face a terrible amount of housework looking after my father-in-law. Although I was often very tired, I couldn’t give enough time to rest for myself. Finally, after my father-in-law’s funeral, I was able to make an appointment to see a doctor for myself. But, it was too late to fix the problem of my health… which was already very critical. (Ae)

I have a grandfather who died of brain cancer when I was a little girl. And my grandmother died of a stroke when I was a freshman in college. My mom had an ovarian tumor about five years ago. At that time, my mom also had some serious depressive symptoms because of the ovarian tumor. My mom actually attempted suicide by overdosing her medicines. Several years ago, I had very odd feelings and thoughts… that my life was not as happy as others. Without any specific reason, I had trouble keeping my mind on what I was working on… and, of course, I felt really, really tired. It could have been a very early sign of a liver problem. I regret that I didn’t quite pay attention to the symptoms that I had. I wish I had a kid so that I could experience a little bit of motherhood. I am in my 40s and my doctor said that I could have a baby but he wouldn’t like to recommend that I do so… because of the toxic chemotherapy drugs or radiation therapy. When I was in good health, I didn’t want to have a baby at all. But, now… this moment when I am actually dying, I regret that I so recklessly had an abortion. (Hee)

One thing that I learned about myself… I am a typical example of the last minute person. That’s why… I am not able to get things done or tidy up systematically. Who knows if there might be another six months which might be given to me? I will be in big… embarrassing trouble when I meet God about the fact that I couldn’t keep my promise on time. If I had known earlier about the fact that I could survive longer than six months… like more than two years… like… until now, I really could have made a big difference in my life. I feel that I have wasted my two years hopelessly and meaninglessly… worrying and despairing… blaming everything on God and… sitting in my own self-pity. What kind of life is this? That’s what’s bugging me the most. In due time, I will try to sort out my things. But I can’t tell when and how. My biggest problem and worst kind of habit is procrastinating… everything until the very last moment. I don’t think that I can change my habit right away but I will try to tidy up my things very soon. God gave me plenty of time to change my bad habit of 64 years but I didn’t quite get it. I realize I am still the same man who has a habit of putting things off and doesn’t want to think about the next plan. At this point in time, I don’t think that it would make a big difference even if I was given a substantial amount of extra time again. I know myself too well. (Dong)

Yes, I love my family so much but I have never had a chance to tell them how I feel… how much I love my wife and my son. Between disturbing thoughts, sometimes curiosity and ignorance can lead

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to foolish behavior. A couple of times, I had met a fortune teller to see if there was any possibility that I could be cured or how many months were left for me to live. I regret that a lot. I am a Christian. Why did I ever think of going to a fortune teller? It was so foolish of me. I must have completely lost my mind. I had plenty of days like countless birds’ feathers. I had plenty of time to get my things organized. One of my bad habits was to put things off for tomorrow. I used to say, ‘I’ll do it tomorrow. I’ll think about that tomorrow.’ Tomorrow… tomorrow… tomorrow; yes, I have to admit that I was a chronic procrastinator. Here I am… tomorrow may not be brought to me anymore. (Hoon)

I was always busy working and I didn’t make my time available for my kids even for their birthdays or children’s days. My kids are more mature than other kids so they never complained about my not being there. My kids have never asked me about toys or birthday gifts. I wish I had more time to spend with my kids…going to a playground or going on a picnic. What great kids they are! What a lousy dad I am! I was so strongly assured that cancer couldn’t be a part of my life since I was very cautious about my health by eating healthy and by doing exercise as much as I could. I was overconfident in my health. When I had some chronic fatigue symptoms, I thought I was going through some sort of midlife crisis. On the job, I had to handle everything quickly which brought me an extreme level of stress. When I got home, I put most of my stress or anger on my wife. I saw her crying in the kitchen alone many times. At that time, I simply thought my testy behaviors were because of the tediousness of the married life just like other married couples. I didn’t pay attention to the warning signs, until everything fell apart. I was an idiot. There is no excuse! From my high school through my college days, my life was a series of challenging times because of the political persecution. Many times, seriously… I thought of fleeing from my homeland. At that time, my parents were very ill so I couldn’t leave them behind, knowing that they could have died because of the political situation. So I settled down for my parents’ sake and gave up many other options. If I had made a different decision, would my life be a lot better than now? Then, what next? We will never know, will we? (Yang)

I have five more years left until my retirement. I didn’t really understand the person who used money to gain power or a higher position. I was not desperately obsessed with climbing to the higher position by stepping on my friends. I thought I always had more time to be promoted to a higher position so I gave away my opportunity to others. It was not a discreet decision for my career and, less so, for my family. My kids could have received more benefits for their college education. If I could apply for this kind of thing again… like applying for a manager position, just one more time… then I would never give away my chance to others. For my kids’ future, if the opportunity presents itself for promotion, I would like to apply for the higher position regardless of my cancer progression. (Jin)

I am only a 47-year-old man who has just settled down, working like a worker ant to pay off the mortgage on the house and my car. My kids are too young to understand this complicated situation. I haven’t really had much time to spend with my kids. I missed every important moment that my kids experienced… like the first word… first step… first time they sang in the school play… first school trip… first art work they made. I feel that I haven’t contributed much to my kids’ fugure. I was always very, very busy with my work and my social gatherings with my boss and my co-workers. I am seriously wondering now: Where did my time go? (Kang)

About 2 years ago, a little after my 60th birthday, I was diagnosed with liver cancer. I didn’t have any distinctive symptoms. At that time, I wasn’t sick at all. I was just a little bit tired and my eyesight was getting worse so I had some trouble reading the newspaper. I thought those symptoms… fatigue and worsened eyesight were just natural things with my age like everybody else. I regret that I wasn’t sensitive enough to detect it. I didn’t pay attention to the chronic fatigue that I had had for over a month. I have… I had a job to do which made me extremely busy all the time… which involved drinking and smoking to get through the stressful work. Almost three or four days a week, I was dead drunk without paying attention to what was happening to my health. I was a good employee and I was quite good at socializing. When there was some problem regarding interdepartmental communication, I used to help straighten things out. I was more like a troubleshooter. But, very oddly, I was so blindly ignoring my own health problems. I thought that cancer or any kind of serious illness could happen to

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anyone… anyone except me. I was too busy thinking of my kids’ future and a bigger house to purchase… the future never guaranteed to me. I was missing the most important thing… the present. I had many present times given to me that I should have more focused on. I should have known earlier about the fact that life can’t be repeated or replaced by anything else. I ignored the present time to prepare for my unguaranteed future. It was so stupid of me! That’s what has been bothering me so badly. By sacrificing most of my time and the moments that I could have enjoyed, I made a good promoted position. But, what’s left in my hands? If I could live my life again, would I live it differently? I didn’t take time off or vacation because of the demanding nature of the work. I didn’t really have time for myself to go out for a walk after dinner or smell the flowers or take a nap watching the sunset. I may not have enough time to finish the manuscript of the book of poetry that I started to write. When I was a young boy, I was very talented at writing poems and drawing landscapes. My parents were not quite happy about the fact that I wanted to develop these talents. According to my parents’ discipline, I could keep writing or painting as one of my hobbies but I should not continue developing these talents in order to get a decent job. I was told that writing or painting does not put the food on the table… those talents should not be encouraged for my future career. I didn’t argue with my parents but deep down in my heart I felt that I had some unfinished tasks. (Yul)

One can’t really be too sure of the future or one’s health. Who could imagine me lying in a hospital bed? If I could come into this world again, could I look at things differently? Could I live my life rather humorously? I thought… talk was cheap and laughter was also cheap. I was told… to become a real man… silence was golden. I was told… a man of few words was a real manly man. I wish I had expressed my feelings more often to my family when I had plenty of time. When my brothers were diagnosed with liver disease, I didn’t think of the fact that I should have paid more attention to my health and some symptoms that I had… such as fatigue, being thirsty, and intolerance to heat or cold. At that time, I had feelings of being very hot and too cold. I totally ignored those symptoms because I thought they could have originated from my hasty temper, not by illness. After one of my brother’s hospital admissions, I finally went to see the doctor, thinking that I might have the same disease as my brothers. But, it was too late to restore my health. My wife changed most of her cooking recipes from cooking tasty foods to cooking healthy foods. I met my wife when I was in my 20s and we have been married 47 years. I am accustomed to my wife’s cooking for over four decades. It’s not because I’m immature, complaining about the food all the time, but it’s because I can tell the difference in the taste of the new trial with new cooking recipes. About a month ago, I had to give up most of my favorite type of food at once, including drinking. But, it was too late to restore the liver function that already had been damaged. It’s bad that I changed my diet too late. (Sung)

Several years ago, when I found out the fact that I was a hepatitis B carrier, I should have taken out the root when I could! The root! I didn’t put weight on the symptoms that I had. I thought hepatitis B was just one of those common diseases… like watching a neighbor’s dog come and go. Yes, I thought my status of being a hepatitis B carrier was just like the common cold. I didn’t know I could end up with deadly liver cancer. Seriously, I have been living like a nearsighted person. In my case, I didn’t see the consequences of neglecting my pre-existing health conditions. Surely, it was so true that the base of the candle was dark. I didn’t recognize the fact that the untreated hepatitis B could be a cause of a deadly illness. How do I end up here living with liver cancer? Interestingly, those symptoms were clearly like an epidemic flu and it was repeated periodically. I should have been more cautious about the repeated frequency of the flu-like symptoms. Considering I never had flu, it was very odd. I thought I was just getting older so I ignored the early warning signs. (Gil)

Every day when I get home, I am exhausted. I kept working even after liver cancer diagnosis. That was so stupid of me. I am wondering if had stopped working and quit my job two years ago, would the current cancer have developed to the terminal stage? My wife is a good woman and a good mother. I never tried to understand why my wife was doing certain things differently from our other neighbors. Since she didn’t give me her heart or verbalize her feelings about me, sometimes the hatred grew enough to make me want to end our marriage. Yes, like other married couples, we had some crisis moments. I regret that I didn’t treat my wife kindly. Because of the home where my wife grew up, expressing her feelings may not have been a good idea in order to keep her safe. That’s why she has

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been so submissiveness. In her mind, the only self-preservation that she could try was shutting down her feelings so that she didn’t get hurt. My wife… I don’t think that I ever truly understood about her pain and traumatic experience from her childhood abuse. She never wanted to open this scar and I didn’t force her to do it. As a husband, I feel so sorry about what happened to her and I feel so sorry that she had to marry me to escape from her abusive father. I never thought of my wife’s perspective. I regret that a lot. Now, I am more understanding about my wife’s pain and helplessness and fear. I haven’t had enough time to apologize for being too busy at work; another excuse was that I didn’t want to be the one who had to open the beehive. Also, in my culture, a man who is carrying emotional things too much is considered a weak man. Those things are supposed to be a woman’s job: to take care of emotional problems… either solve them or bury them. I should have been nicer to my wife. But, I never did. Every day I regret the fact that I have hurt my wife. (Jong)

When my wife asked me to buy the fancy washing machine, I didn’t agree with her. I said the old washing machine was still in good condition and ordering a new fancy washing machine was a big waste of money. Well… the old washing machine was not a fully automatic machine and the timer was broken. In order to use the old washing machine, my wife had to set the alarm clock so that she could stop it when the laundry was done. I have been blaming myself for the fact that I didn’t order the new washing machine for her right away. My priority was my kids’ college education and the new washing machine was way out of my budget. (Taek)

I had a decision to make whether I wanted to travel abroad first or I wanted to go to the hospital first. At that time, I had no distinctively visible symptoms except fatigue. So my wife and I decided to go on a trip to China first. During the 2 weeks’ traveling, I felt extremely tired. Unlike other people in the group, I had a hard time to continue walking. I saw the Great Wall and many historical places and world-famous tourist attraction places. The second week, I was getting more tired. My wife and my friends in the group teased me and made a joke of me. They probably thought that I was just lazy and getting old. To make it worse, I had a serious stomach problem. I couldn’t eat well and I couldn’t keep up with the tour group itinerary… so I had to ask to have some time off for one day. I should have looked after myself more carefully. But, it was too late to fix my health problem. Another regrettable thing is… I complained that my wife wasn’t toughening our boys enough. When my youngest son died at the age of five, I blamed myself for being so hard on him. I still regret that I didn’t hug him enough as a child. One day, my youngest son returned from his field trip to an arboretum and he gave me a necklace made of wild flowers. He made it for me. It was May 8th which was Parents’ Day. I wasn’t quite happy about the necklace that he made because I thought it was too girly a thing. I didn’t even compliment him. (Myung)

About two years ago, I had a minor bruise and scratch on my leg. Usually, a minor scratch or cut doesn’t cause a serious problem and, after several days, it gets healed. So I didn’t think it was necessary to see a doctor until the itching got more serious and the skin was also turning red. I thought it was just a minor skin problem so I put on a lot of soothing creams. But the itching happened in many places on my body. I didn’t think that the itching could be related to liver cancer. It was a bad idea to delay getting some medical care even though the problem was a minor skin rash. (Park)

I did such a terrible thing to my oldest son. I was always busy and spent all of my time at work. Now, I come to think of that: why did I so desperately try to work so hard? No doubt, I love my job. But, it could be just an excuse to get away from my son because he was my biggest burden back then. My son had some alcohol abuse problems. I put him in rehabilitation but he couldn’t pull it off. I was really tired of watching him… acting like a juvenile delinquent. I thought of him… he seemed like a failure in every way. The truth is… I didn’t love him so much as a father… I just pitied him. I blamed him for ruining my life… and I blamed him for losing my good reputation on the job. (Hong)

My life was not always as good as others. At some point in our marriage, we had one year of separation. While I was too busy with my job, I hardly had time to talk to my wife. And naturally, she got involved with someone. I trusted my wife with my life. I felt so betrayed. She hurt me so badly.

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After my wife came back to me, I became even more silent. Probably, deep down… I wanted to hurt her like she had hurt me before by making her suffer. I was so wrong! (Joong)

About eight years ago, I was told that I had chronic hepatitis. So I thought my symptoms of fatigue and hot flashes originated from the chronic hepatitis. I had no clue… the symptoms could have been an early sign of liver cancer. At that time, I lost my job… so I was too busy looking for a new job. My husband said it would be OK for me to have a break between jobs. Money was tight. It was very difficult to raise five kids with only my husband’s salary. I didn’t pay attention to looking after myself. (Kyu)

Stigma (n=25)

Actually, I was looking for someone who sincerely listens to my conflicting feelings without giving me a lecture. I mean… I need someone who can keep confidences like a tomb. That’s exactly what I need right now… because I don’t want to advertise my failure to everybody in the world. Living with liver cancer makes me feel that I am a loser. (Tae)

It’s not about the hospital. It’s not about the cancer. It’s not about horrible days of fighting against the disease. What has been bothering me so badly is the information that I heard from my doctor. My doctor said that liver cancer is not an infectious disease but the hepatitis virus is. What caused this current incurable disease of mine is the very virus that I have carried for a long time. I am trying to be more cautious when my kids and grandkids are with me... no harm in taking precautions. If one of my kids or my grandkids was diagnosed with the same cancer as mine, that would be the greatest pain for me. I don’t want them to suffer from such a horrible disease. I don’t invite my neighbor to my house any more. I really, really don’t want any of my neighbors to know about my disease. What if they think of my kids and my grandkids differently? What if they look down on my grandkids? What if they won’t allow their grandkids to play with my grandkids because of my illness? This will end here. My sufferings should be buried with me. A cancer coordinator told me that I could have received some benefits if I had reported my illness. When the coordinator mentioned the process of reporting, the assurance of the benefits was very limited and also there were no guarantees that I would receive more benefits. I didn’t file my case in the civil service office because I can’t bear to see my kids and my grandkids being treated like the lowest class people. (Hoh)

I saw the public campaign on TV to prevent hepatitis-B. The message looks like… the low class poor people have a high risk for hepatitis and that hepatitis can be a direct cause of liver cancer. People on TV were low income salary men and they thoughtlessly drank a lot of alcohol using unsanitary glasses. I mean… the whole image of the campaign was about dirty food or ignorant behaviors. That’s why I didn’t understand about the fact that I was diagnosed with liver cancer because I was not living like those pictured in the campaign. I am very much afraid of telling the truth to my friends that I have liver cancer. They may think about me differently. (Hak)

I wouldn’t like to lose my good image in front of my kids. I wouldn’t like to be remembered as a hopeless liver cancer patient. That would be the most unbearable shame for me. I don’t like to be recognized as a hopeless patient who is fighting a losing battle. I don’t really appreciate receiving pathetic charity. I really don’t. I am not denying that I am dying. But, whenever people give me those looks, it makes me so angry. Why do people have to give their cheap pity to liver cancer patients? As a father, I wouldn’t like to become a nasty roadblock for my daughter’s wedding. Having a liver cancer patient in the family, it’s my fault. It’s all my faults if anyone is to blame. I wouldn’t stay calm if people pointed a finger at my family as cursed losers. I know that patients like us are what others desperately want to avoid because we are like a pain in the neck or dreadful reminders of what can happen. I know my case could be the worst of the worst nightmare of early-stage liver cancer patients. (Choi)

Why am I now becoming like a piece of junk? Is that because of the nature of my illness? My boss is so mean and she won’t allow me to take any more vacation with a paid salary. I would like to quit the

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job but I am very concerned about losing my health insurance benefits. My husband is working with a full time job but it’s been hard to make both ends meet. I feel so sorry for myself… for my whole life. I have never pictured myself dying of liver cancer... the most horrible kind of disease. (Yeon)

Many of my wife’s relatives and cousins are still blaming me severely. I can’t tolerate the fact that someone would look down on my kids and my grandkids because of the nature of my illness. My wife’s relatives and cousins are still saying that they can’t honor such a person as one of their elders. They said that I was born with bad blood. The most torturing thing is the fact that I am a liver cancer patient. Those people might consider my kids as lowly people with bad blood, too. (Ryung)

I have been a windshield for my kids up to now. From now on, my son has to become a big mountain that can shield the whole family from the heavy storm. People may think that I deserved to die of liver cancer. Even beggars or homeless people don’t have liver cancer. I am afraid that no one will come to my funeral because of the nature of my illness. I do love my grandkids but I try not to hug or kiss them on their cheeks anymore. I don’t want to pass my disease to my family. I asked my daughter-in- law to buy a bunch of disposable utensils and plates and bowls so that she didn’t have to touch or clean them up after I have used them. I must protect my family by any means and make sure they won’t feel humiliated by others. (Tark)

For many reasons, I had to refuse to meet some unwanted visitors during my hospital admission. I wouldn’t like to be looked down upon by those despicable creatures because of my illness. (Kyung)

From my experience, prejudice or wrong judgment itself would become poison if it was spread to just anyone. I have never smoked or drank in my life but I overheard…someone said that my pleasure- seeking behaviors brought the shameful disease on my body. Other nicer people said that there probably was questionable behavior regarding my relationships with women. Past is past, isn’t it? I can’t reverse the time clock. I can’t fix what already happened in my past. (Young)

Wouldn’t my relatives be interested in finding out why a successful business man like me, who was succeeding in all things, ended up here as a dying liver cancer patient? Would they believe that liver cancer is not a shameful disease or punishment from the Divine Creator? I don’t think so. I’m going to try everything to solve this misunderstanding between my family and my relatives about the nature of disease until I actually die. I wouldn’t like to leave this world before solving the misunderstanding. I don’t want to die in the presence of people who are ashamed of me. (Jang)

This tiny thing like brushing teeth didn’t usually bother me when I was healthy but now it’s bothering me a lot. I keep trying to clean my mouth as much as I can. But, I notice the smell of my breath is not the same as it used to be... which could be the distinctive manifestation of terminal stage of liver cancer. That’s why I have a new habit: that is, to cover my mouth when I talk to someone. I don’t want anyone to notice the nature of my illness. (Keun)

To me, living with liver cancer is a lot like breaking up with my fiancé or having an unwanted pregnancy, both of which make me depressed and nauseous and shameful. From my parents’ perspectives, I am actually their troublesome burden… the burden they want to get rid of. Recently, one of my close acquaintances invited to me to his priestly ordination. As much as I liked him, I still seriously hated meeting those hypocritical Christians. So I had to decline the invitation. The more serious reason was that I didn’t want them to notice my swollen and yellowish face. I know my place. It would be so humiliating if I were there at the reception. That was a self-preservation aspect. (Hee)

I wouldn’t like to be remembered as a sick patient who was lingering with his terrible yellowish, swollen face. I saw that the public campaign advertisement pictured a hepatitis patient dying with dreadful yellow eyes, with a yellowish black face and a swollen belly and yellow tears. It was a very shocking picture to be on public TV. Anyway, I don’t want to be remembered like that patient on TV. (Dong)

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I had to keep my liver cancer treatment a secret because I was so afraid of losing my job. I didn’t want to be abandoned by my co-workers because of the illness. I didn’t want to disgrace my family because of my shameful past conduct which brought on the liver cancer. If I had told my boss or co- workers, I am not saying they would have intentionally consigned me to the place of death. But, it would have made everything a lot more difficult... from going to a social gathering to maintaining my position in the department where I was working. I didn’t lie but I didn’t tell the truth. Living with liver cancer is not something anyone should be proud of. (Jo)

For cancer treatments, I have been using my compensatory time off or vacation time. No one at my work place needs to know that I am fighting cancer… because there are plenty of other candidates to replace my position. I don’t want to be replaced so quickly. I intend to keep it that way until the last moment I actually have to let my co-workers know about the nature of my illness. My drawback was the fact I only had my college education from one of the small local colleges which could be considered as nameless, making me a nobody… compared to other team members from the most prestigious universities. That’s why I don’t want to discuss with my co-workers about the fact that I have liver cancer. Still, in our society, a liver cancer patient is considered as one of the poor from low class who has been drinking like a maniac. I don’t want to imprint my image on their judgmental minds. (Yang)

I know that I won’t be that easily fired by my current manager. But, I don’t want to let everyone know about my liver cancer diagnosis. I don’t think that is a good idea to advertise my incurable illness. Considering the nature of the disease, what if my co-workers don’t want to share the office or the restroom with me? I am not lying... I am just going to keep my mouth shut. (Jin)

No matter how kindly my pastor says the prayers, I feel so awful about the fact that I am one of the liver cancer patients. I can’t even speak of my illness openly because I don’t want anyone in church to know my diagnosis. I have decided to keep it that way. I may have to ask my pastor and parishioners to pray for me but I am not comfortable with sharing my current cancer treatments or progress. I have a college degree. I have a decent job. I know I don’t belong here in this group, with the other liver cancer patients. I just don’t know what happened to me. I never was physically involved in other inappropriate relationships. No one needs to know that I am fighting liver cancer. I just told them that I needed to have some time off for my surgery. I am not comfortable with sharing my medical history. They will notice someday about my illness through other routes but I don’t want to inform them in advance. (Kang)

The fact that I am dying isn’t the biggest problem anymore. I am very close to my brothers….my brothers who were diagnosed with liver disease earlier than I. I know that they could be leaving this world before me. I regret that I behaved foolishly toward my brothers after their diagnoses with liver disease. I tried to avoid direct bodily contact with my brothers. I told my next door neighbors that I didn’t know my brothers very well. Yes, I lied because of the nature of the disease. I did that on purpose to protect my kids. When I was diagnosed with the same illness, I realized that I shouldn’t have done such insensitive things to my brothers. My kid’s wedding is coming very soon. I will be there as if nothing happened. I don’t want my kid to postpone the wedding on my account. My brothers and I have been suffering from the same liver disease. People at my kid’s wedding may think of my family as cursed or that some bad things run in the family like a hereditary disease. That’s why I don’t want anyone to know about my illness. I don’t want to let my in-laws know about the fact that I am in the middle of liver cancer treatment. They don’t need to know and I intend to keep it that way. (Sung)

I know that I am a hepatitis B carrier as are my three brothers. About one and a half years ago, I was finally diagnosed with liver cancer. I don’t want to admit it but… I feel some bad things run in my family. Four brothers, including myself, sharing the same type of incurable disease in one family… I mean what are the odds of that? I don’t want to lie to my co-workers but, at the same time, I don’t want to feel their hatred again because of my illness. (Gil)

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It’s been about two years living with liver cancer. I won’t tell my boss and co-workers about my illness until I have a retirement ceremony. No one needs to know. My son has been seeing a girl for over a year but I don’t want him to meet his girlfriend in the hospital during my admission. What girl would want to marry a boy who has a dad dying of liver cancer? I don’t want to affect my son’s future because of my illness. I don’t want my son to stop this good relationship because of me. The bad news could affect my son’s future. If such a thing does happen, then my deadly disease will surely ruin my son’s future… the people whom I care about so much. I stopped building a new relationship in this hospital. I don’t want either good or bad news to be spread beyond these brick walls. (Jong)

My life was a lie… a big lie. I have lived a double life. I criticized people who were smoking or drinking. I also told them to stop those bad habits. To my fellow Christians at church, I preached that ruining one’s health by smoking or drinking is sinful and that they should stop these behaviors. I pretended that I was a good Christian. But, the truth is… that I was an alcoholic. Because of the extremely stressful job, I couldn’t go to sleep without drinking… and that’s how it got started. I blamed God who gave me such a hard time. I was becoming more addicted to alcohol instead of seeking God’s help. Sometimes, I wonder myself if my reckless, dishonest lifestyle might have brought the cancer on my life. (Myung)

Occasionally, I may have some thought of complaining about my fate… my unfair life laid out in front of my eyes. I told my doctor that I was not clinically depressed and that it was just an accident. How many times do I have to explain that I am not the kind of mother who would carelessly give up her life in such an extreme way? I already brought a tainted image on my family by being diagnosed with liver cancer. I don’t want to make an additional embarrassing reputation for my family members. (Noh)

I haven’t told my boss that I have liver cancer. I think he doesn’t need to know about my current cancer treatment or my diagnosis. I hate to be treated differently compared with before the liver cancer diagnosis. (Seon)

Another important thing is that… I don’t want to leave an embarrassing medical record such as having counseling from a psychiatrist. Who knows? I have already brought enough pain on my family. I don’t want to add more burdens or embarrassing things to my kids’ future résumé. Because of my medical history, what if my kids would have a serious problem in getting a better job or getting married? My kids are incredibly bright boys… great instructors and loving sons. But, lately… something has got them all torn up inside. I hope it has nothing to do with my illness. I don’t want to be getting in the way of my kids’ future paths. (Joong)

I have been so worried that my daughter might not meet a decent man… because her mother was dying of liver cancer. I don’t want my future son-in-law or his parents to know about my illness. (Kyu)

Bodily Pain (n=8)

Very often, my back hurts and my legs feel stiff and my chest feels stuffy. I think the cancer has damaged every corner of my body very badly. I’m trying to take it easy. But, I can’t be at ease because my whole body is aching. (Keun)

I don’t usually eat a lot of salty food but often my limbs are seriously swollen in the evening. I have had issues with my hands, legs, and feet swelling for years but lately I have noticed that even after taking medicines, they are still swollen, feel tight and hurt. At times I can barely stand because my ankles and feet feel as if the bones are literally popping out of my skin. It takes time to stand or walk. It seems to be getting worse each day. During the chemotherapy this time, I had a really difficult time adjusting. (Jin)

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Fortunately, considering my delayed diagnosis with liver cancer, during my first year of treatment, I didn’t feel much pain. I think the pain killers worked fine for my first year of cancer treatments. But now, the pain is bothering me more and more. Currently, the most bothering thing is a headache. The excruciating headache is bothering me like heck! The severe headache makes me more nauseous… makes it impossible for me to open my eyes or think anything reasonably. It feels like someone is axing my head and poking my eyes from the back of the eyeball with a spicy, hot pepper jar. Although most of the time the symptoms are under control by pain killers, still headache isn’t that easy to deal with. I wish this pain would go away at once so that I could sleep comfortably at night. (Lim)

My shoulder pains and back pains are getting worse every morning. I don’t like sleeping in a hospital bed which makes me extremely uncomfortable and which gives me more knots. I grew up using a heating system called Ondol (translation: Korean traditional architecture which is an underfloor heating system). When I am not feeling well, I need to lie flat on a heated floor. But, now here in the hospital, I feel cramped in a small metal square bed. For the first year during the cancer treatment, I was very afraid that I might have some other undetected illness in my back or shoulders because of the stiff knots. I didn’t realize that it was all because of the damn hospital bed. What’s all this about? I mean we are Koreans who grew up using Ondol. Why doesn’t any room in this hospital have the Ondol floor? Three of my brothers are going through the same suffering as mine but I think I am doing worse than my brothers. The pain is not just about my shoulders… my neck and even the whole of my back hurts. In the evening, I have a hard time putting on my shoes because of the swelling of my legs and feet. So, I wonder if such things could be caused by some other serious illness. (Gil)

My mouth is all dry and sore. That’s why I’m having a hard time eating or drinking. My throat feels dry. Joint ache…even a slight touch to the back of my hand is hurting me. I have been living with liver cancer for over two years. I often wake up with my whole body aching, I mean my entire body. (Jong)

Pain in my back and flanks bother me a lot lately. I have blisters on the soles of my feet. I have a difficult time putting on my shoes in the morning. I wish I could go for a walk more often. Even though it’s daytime right now…, I can’t go out for a walk because my feet and knees are hurting. (Taek)

My back pain is killing me. I did keep changing the sleeping mat and blanket to find more comfortable ones but they aren’t making any difference. I am constantly feeling tired but I can’t get a good night’s sleep because it is as if some small stones keep poking and rubbing beneath the sleeping mat. A long time ago, when I was in the army, I had no problem with sleeping in a cramped bunker. Until I face liver cancer, I have never understood people who are suffering from insomnia or depression. (Myung)

The skin problem and the pain in my swollen ankles make it difficult to walk. In the morning, I have to put on one size bigger shoes than my actual shoe size. The swelling and cramps of my limbs make it very painful to move. Every morning, I feel my limbs are like over-pumped balloons, as if someone over-pumped air into my limbs right before the explosion. Once I start moving around, the swelling goes down gradually. In the early morning, tension and pain rise to the peak. (Park)

Weakness (n=3)

I had never taken any vitamins because I didn’t see the need for that. When I was younger, no matter how serious the flu I had, it only required a day or two to return to my work. I only needed a big bowl of comforting rice soup and a lot of honey tea. The year I turned 50, I felt some differences in my back. It took more and more time to recover from a slight sprain or muscle pain. (Hak)

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After the sun goes down, I feel dizzy. I must’ve lost energy during the long-term cancer treatments. I used to be a person of patience. But, I am tired going through this long-term illness. Sometimes even washing my face is difficult for me. (Yeon)

Since my wife’s death, my health has been deteriorating without any specific cause. I used to come down with a common cold or flu only once a year… but, now, it’s happening too often. And it used to last only about a week… but now it’s over half a month with a barking cough and muscle pain. I asked my doctor to recheck to see if I have any other illness beside a liver problem because my sore throat and mouth make it almost impossible to chew and swallow food. (Taek)

Embarrassment (n=1)

Three nights in a row, I couldn’t sleep at all. Next morning, I went to a pharmacy to get some sleeping pills. I took two sleeping pills at night but they didn’t work. So I took another two pills but they didn’t work. So I took two more pills again. I don’t remember what happened to me next. The next thing I remember was waking up in the emergency room. After taking six sleeping pills, I must have collapsed on the kitchen floor, making a crashing sound in the middle of the night. My husband found me passed out on the kitchen floor and he called the ambulance immediately. It was too embarrassing to open my eyes. I had to close my eyes as if I was sleeping. (Noh)

Irony (n=1)

Well… the reality of the following year was a somewhat ironic situation, even a little bit funny. Honestly, I didn’t think… I thought that I didn’t need to keep winter clothes and shoes. Well… here I am now… in the middle of the winter season again. I should be happy for the fact that I actually needed to use my winter coat twice which was more than we all had expected. But, at the same time, I realized how thoughtless I was. I felt a little bit bitter. Yes, I didn’t think of a long-term plan…a plan that would take longer than six months. As the same season came back to me in the following year, I realized that I had made my decision rather hastily. Yes, I realized that I needed to use the winter coat and snow shoes and other things again. Yes, I still needed those items. That was the ironic situation. I feel very much frustrated about my time frame. When is the right time to prepare myself to leave? Wouldn’t it be too early to give up my cancer treatment or give away my things to others? I know it sounds selfish but I couldn’t just be generously accepting the scene especially when some homeless guy is walking around in my very expensive winter coat and gloves and shoes. I have to say… watching the homeless guy around the subway station made me so upset. At that time, when I was told that I had liver cancer, I was in great shock. When I spent a lot of time in my room, cleaning up the closet and books and other things, no one told me that I needed to reconsider my decision carefully one more time. No one told me that I could survive for more than one year. It Is Ironic, Isn’t It? (Dong)

Positive Themes

Acceptance (n=37)

Earlier, I used a lot of words to pray. But one day I realized that a sincere prayer doesn’t necessarily mean that I need to recite a long, flowery expression. One night for my evening prayer I picked up very simple prayer words… the words that I picked up were ‘Lord, have pity on me!’ during my entire evening prayer. That night, I slept very well. (Tae)

Now I feel much… definitely feel much more confident about the liver cancer treatments or procedures as time goes on. Nothing’s new anymore. Nothing makes me feel intimidated. I am praying every day... it will be over soon... and I hope it will. Soon I will be ready to cross the Jordan River (translation: crossing the Jordan River is a metaphor for crossing from the troubles of this world to the peaceful abode of Heaven). (Hoh) 253

I gave my son a tough time helping him realize his huge responsibilities after I am gone. Did I really have to go that far? Yes, surely it was a very important matter for me. I wanted to give my son a seed… the seed that surely can grow and bear good fruit. I know I have only a little time to do it. My son is only a high school boy. Over and over, I gave him all the instructions regarding our family history book, dates of ancestral rites, memorial ceremony of ancestors, commemorative rites of all ancestors and preparing food for the ancestral rites table. (Hak)

I have seen and heard enough about the terrible progress of liver cancer. I consider my family lucky because I am the only patient in the family… it could have been worse. I don’t believe that I will get better. I don’t believe that I could live forever. If I am still alive five or six more years, wasting more and more money, I wouldn’t like to live like that. (Choi)

Some people that I met in the hospital told me to sue the company. I know too well that’s not going to happen without evidence. I don’t want my kids to remember me in the last part of my life as a greedy person who doesn’t know the meaning of letting go. I already emptied my mind of all thoughts of demanding compensation. November is too cold to dig a grave. I wouldn’t like to imagine the picture of my kids and my husband crying at my funeral in freezing weather. Spring or fall would be much nicer than winter. Summer would be too humid and hot for my family to arrange all the necessary things. I would like to leave this world surrounded by the people whom I loved and the seasonal flowers that I was familiar with. I wouldn’t like to be lingering here more than I deserve. (Yeon)

I have already placed a mark on the ground where my body will be laid to rest. Before I get really, really sick, when I am still able to walk around by myself, I want to go to my parents’ grave to cut the grass and I want to tidy up the grave. I would like to meet some friends of mine who are still living in my home town. At Hansik (translation: one of the four major festive holidays in Korea) last year, I couldn’t go to pay my respects at my family gravesite because I wasn’t feeling well. I would like to do more to set a good example for my kids when I am still alive. I talked to myself several hundred times. Forget it. Stop torturing yourself by overthinking about things… things that have not happened yet. Yes, that’s the best policy to carry on my normal life. It’s only one life either way. Who has lived twice? Who? There’s no such person. If it’s impossible to cure my illness, it’s better to leave sooner rather than later. If I don’t think like this, I’ll go completely crazy. (Whan)

I see my emotional pain, unspeakable fear, and inevitable reality. Once I had tried to hasten death because at that time… I was too scared to face the dying process. Now, I am not afraid of departing this station for the eternal world. It could be like traveling on the train. I will get on the train and I will fall asleep. By the time I wake up again, I will be arriving at my new destination. I am ready for that. (Mah)

I am not asking to receive a miracle from God. There’s no regret for me even if I left now. I know that I have an incurable disease and my doctor found more cancer in other parts of my body, too. Considering that the cancer spread rapidly, fortunately, I don’t feel much pain. The most difficult thing is to keep a balance between facing the depressing reality and readjusting my daily routine. I am trying to find some joyful moments in my life in the threat of death. I know my life depends on God… so I don’t think I should drag my spirit down by myself. It’s in God’s hands now. It is beyond anything I can control. Although I didn’t think I could come this far, I have. I only thought of surviving for one year as my duty for my kids. I have no regrets. Now it depends on my blood test and God. I think it’s time to write my living will. I don’t have much to leave my kids. Whatever the outcome, I will consider it as the will of God. I am trying not to overreact about my anticipated death. Although my hands may tremble at my last moment, I hope that my heart won’t be shaking with fear. There is a time when I just have to go. I just have to go along with the given circumstances. I think this is one of those times. I must just go along without any fear or worries. (Sook)

I have been living about four years with liver cancer. The moment I was diagnosed with liver cancer, I changed my lifestyle… the way I used to eat and the things to which I was accustomed. I had to change my routine. My routine was going out at dawn to work on the farm and coming back home at dusk. Yes, that’s the place where I used to be. One day, I was waiting for my turn sitting in a

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wheelchair in front of the procedure room. I saw a very small bed with wheels carrying a body covered with a white sheet. I realized that life could be shorter and one could actually die regardless of one’s age. I am glad that I didn’t agree to have a major surgery. If I had gone through that, I wouldn’t have sustained my strength like I am now. Every time I come back from the hospital, I go through a preparing to die mode because I want to be less afraid of dying process. I already ordered my funeral clothes. I don’t want to give my kids such an embarrassing moment, measuring my dead body to purchase my funeral clothes. I think… that I did the right thing when I had the time. I hope when my time comes I will be less fearful. I don’t want to die in the hospital. I don’t want to carry all the bottles and needles to death’s door. I think… death could be in the impending future… it could come sooner than I imagine. Now I think… I am ready to sleep in my wife’s arms. My wife made my life so precious so I would like to return to the place where she is sleeping... in heaven. (Ryung)

I thought I had only five or six months left to live but I have been living over one year. My kids and grandkids came to see me last week and they prepared my birthday table with my favorite foods. A couple of my close friends were invited. Well… celebrating someone’s birthday was supposed to be the happiest occasion but they seemed so sad to me until I broke the ice. Some of my friends had misheard that I couldn’t even move so they were very much worried before they came to see me. My kids and my grandkids made a deep bow for me in spite of my friends’ objections. I know we shouldn’t make a deep bow to a sick person because that’s for a dying person who goes to one’s last home. But, I didn’t mind. I thought this could be the last. How many more birthday parties would I have from now on? I wish I could be here to see another spring and to see my youngest grandkid’s birth. But I decided to put aside this request for now. I would like to be buried beside my wife’s grave. I told my kids about this. (Tark)

I am not saying that I am giving up everything here. I have already made up my mind. I have already asked the head priest of the Buddhist temple to pray for my last journey. I would like to prepare something more for my wife… just in case. My wife is still young and she has to live on after I am gone. I wouldn’t like to be remembered as the man who gambled away his entire family money at the losing race. I will transfer my house property to my wife’s name. I don’t want to waste any more money trying new treatments. I know cancer…especially the kind of cancer I have… liver cancer is incurable. I may not be a perfect husband and father but I don’t want to leave a terrible burden for my family. It’ll be very hard for my wife to tidy up the house and my personal things after my funeral…because of talkative people. People may think that my wife would like to get rid of everything related to me because she wants to get remarried right away. I’m worried because I know my wife better than anyone else. My wife is the nicest woman I had ever met. When I still have time, as a husband, it is the right thing to make her life easier and protect her from all the gossips. I try to live an easy life, but it’s always very hard. I know I must finish arranging my things before I leave this world. My kids are too young to understand about life and death. I don’t want to scare them but I will talk to them. I would like to prepare her while I am still here. How could I call myself a good husband? It’s my last wish to finish this book with her. The book has much good information regarding death and dying. (Choo)

Most of the people around me think that I am a very strong and fearless man…but sometimes it’s hard for me to keep being a strong and fearless man. Yesterday, after coming back from the CT room, I thought... now would be a good time to discuss something with my son. I told my son: ‘I think I have to ask you to be a big man. Even if I leave, don’t give up hope…hope for heaven and eternal life.’ The dilemma is... when I am not confident in what I am saying, how can’t my kids be? This morning I talked to my son again…about how to face our reality and how to go through it together. Even though he didn’t like it, I had to talk anyway... about death and dying process. (Seong)

I thought… if I can’t give up my anger, then let’s think this way. How can I choose between anger and my life? I realized that the feeling of anger toward the evil man shouldn’t be worth more than my life. I saw many other cancer patients who received the same cancer treatment but their progress was not the same. I believe a person filled with anger cannot be a good fighter against cancer. During the long cancer treatment, at some point, we have to choose between anger and life. That’s my true desire. I saw the common characteristics of patients who fought against cancer successfully. They were

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simple and passionate. The important thing is…that I should know reality and stand above it, knowing how to give up useless things quickly and knowing how to make less regrettable decisions given the limited time. In the end, I know that I have to face death alone. In the end, I may have no choice but to let it go…let it all go. I have already purchased my funeral clothes. I tried the clothes on and it looked good on me. I realized the funeral clothes didn’t have a pocket. It could be symbolic thing: I won’t be able to carry anything on my last journey. I know that I have to go back to dust as I came from dust. It took me 60 years to learn that life could be much shorter than I thought. I’m afraid of death but I am not scared of death like I was before. I think I am getting used to it; so does my wife. My wife and I have been attending a hospice program and we have read everything we could get our hands on about how to accept the dying process rather than live with cancer. We read all of the materials…and…after reading them, we memorized most of them without leaving out a single line. I thought that if I could get used to reading about death, then I wouldn’t be so scared of it. I am not saying that I am not afraid of death at all but I am getting more comfortable with thinking of it as a natural process of life. On the animal kingdom TV program that I watched, I learned that people can develop immunity to snake venom if they are exposed with small, nonlethal doses over a prolonged period of time. I often imagine and compare death with the snake venom. If I accept that I can’t avoid the dying process…if I adjust myself to the shadow of death little by little, the ultimate moment of death won’t be too painful or too horrible. (Kyung)

When I saw cancer patients on TV, I found that their stories of their cancer experience were too dramatically exaggerated and distorted. As one of the cancer patients, I was not always too crazy and obsessed with deadly cancer progression. My daily routine living with liver cancer was not always hopeless misery or the chain of a train wreck. I don’t think we should put a lot of pressure on ourselves because we don’t need to remind ourselves of impending death all the time. Instead of strangling ourselves by counting the time remaining to live, I believe it would be much more valuable to pursue finding some meaningful things like helping others. I don’t mean to be insensitive about the reality of facing death. But we have to remember that we can’t get too crazy with it. I am dying but, at the same time, I am not dead yet. I am just an ordinary man who is embracing the shadow of death a little bit earlier than other people. I would like to let other newly-diagnosed cancer patients know that my lazy routines could be the same as other people…like oversleeping, picking up the newspaper to read, going out for a walk, yelling at my kids and wife. Yes, still I am doing the routines I used to do. Probably, this whole dying thing could be just a very dramatic way to find my top priorities in life. Otherwise, I will probably never know. God has granted me some extra days and years as a gift which is a lot more years than I asked in my prayer. I understand… I don’t decide when my life will be over. God will decide. Considering my current condition, it won’t be too long. Life is not cheap. But during the time given to me as a gift, I wouldn’t like to waste the precious time by recalling regretful memories. I would like to bring this to a successful conclusion. Anyway, we all die, after all. Sooner or later, we all have to face our final destination. In my case, it isn’t taking long to admit the fact that the railroad of my life has an ending point and my train is passing the last tunnel of my life. (Young)

I have been living almost four years since my first diagnosis which means that I must have done well with gardening by repairing my dented body and by getting rid of the nasty weeds. At least I was not totally careless about myself. I met one patient and his family at the Sunday worship service in the hospital chapel. The patient didn’t want to see the reality and he and his family kept asking for a miracle from God during the entire worship service. I have heard the patient and his family actually refused to receive any kind of blood transfusion. I feel deeply sorry to see him driving himself to an emotional and spiritual distress status….not realizing the reality…the seriousness of his illness. I have seen that a lot. I have been there before. It took me almost four years to get rid of the false hope. The whole series of cancer treatments and very complicated procedures…these are just steppingstones over which my experience of cancer will travel easily until I am actually ready to move to eternal life. I’ve never been satisfied with my current life. I have been living in here almost 60 years now. I think it’s time to have some change or adventures in my life by moving to the next world. (Keun)

I have been a good wife, a good mother, and a good daughter-in-law. I believe it’s no shame to spend some time keeping my health. Honestly, I am getting more confident about the fact that… there is a finish line where I can take a rest in the end. I am ready to think about that. Well…it’s long overdue

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to face this honest reality. My husband said: ‘Don’t have complicated dreams in your sleep. I worry that they might trouble you.’ He played my favorite music CD with low volume which made me comfortable as if I was sleeping at home. Living with liver cancer was not all about fantasizing about death or decomposition of the body. I admit that living with liver cancer actually has some perks for me to think about my life and forgiveness. Otherwise, I would never be so forgiving of my mother-in- law. (Ae)

I would like to think of liver cancer as a different type of invitation to the next world which will be a lot better than this world. I have no intention of coming back to this world again. One lifetime in this world should be more than enough to disappoint. I am very much looking forward to seeing my grandmother again in paradise. I don’t expect anyone will shed tears for my sad life. I am just a little bit regretting that I don’t have a kid. But, now when I am looking at the reality in front of me, it could be less difficult for me to tidy up my life alone… silently… without being distracted by motherless children. I don’t think that I could handle that. For me, I think it would be better to leave like this. I have no regret about the fact that I don’t have a kid. I am hoping that I can find my place in paradise or another universe wherever I will open my eyes again. I feel sorry for my parents that I will die before them. In our culture, there’s no greater sin than that. Although my parents seriously ruined my life, I would like to give them one more chance to become good parents for the first and the last time, by burying me in honor that I deserve. I am not scared of the dying process or life after death. What is the worst thing that could happen to me? I have nothing to lose. I have already shredded and burned most of my pictures and award certificates and letters and cards so that my family won’t be frustrated by having to clean up my room after I am gone. In my closet, I’ve only kept one set of clothing for each season and the rest of my clothes and shoes and books… I’ve already given to the poor. Soon, I will meet a lawyer to make my living will, telling my family that they shouldn’t attempt to resuscitate me again. It’s been for quite some time that I’ve lost my appetite and sense of taste… I know… the end is near. For my parents, I would like to leave some money to purchase mourning clothes. For my good husband, I would like to leave my life insurance benefits. I will ask my husband to put my favorite music CD in my coffin. I want my husband to close my eyes at my last moment. (Hee)

I know I might end up in a very hectic situation in the end. At most, six months left to live like my doctor said… it could be happening now. I had all those years to get my things in order or tidy up the messy room but I don’t want to do it too soon. I have decided not to get things done at once. Some of the messy things I might leave behind. I’m not afraid of saying that I may leave some unfinished woodwork that I was working on or unfinished hand-written Bible notes that I was transcribing and many other unfinished things. I will… after all… I will leave all these behind. I will not be trying to finish everything so perfectly. As far as my priority list, certain things that I want to do before I die…… are to read through the Bible at least one more time…. and to clean out my wardrobe. Before I die, I want to burn some of my ugly pictures that I don’t want to leave behind because I want to be remembered as a nice and a good husband and father and friend and a good Christian. So far, I have gotten rid of many of my things like books, woodworking tools, old music tapes, magazines, old bicycles, pictures, and flowerpots. For most of the items, I donated them to the church or to the charitable organizations. I am trying to tidy up more as much as I can when I still have some strength to carry on. When my time comes, I don’t want to make my family members feel miserable one more time by having them organize all my things left behind after my funeral. That would be really, really cruel and painful for them. I don’t want anyone to feel guilty or blame themselves regarding my dying process and death because living with cancer or being diagnosed with cancer is clearly no one’s fault. It could have happened to anyone anywhere just like sunrise and sunset is happening every day. During my first year of cancer treatments, I didn’t quite expect to see summer of the following year so I gave away most of my clothes from the summer through the winter season. I thought… keeping all my clothes from four seasons in my closet was selfish and somewhat in vain as a person who had been expected to live only about six months. That’s why I was very happy to give away my things. Unlike other people, I feel that I am the express train taking a shortcut without speed limit to go to my final destination. I would like to ask to take some break between the stations where I am traveling but it seems that I don’t have the power to stop the train. Yes, that’s why…. I think… that people living with cancer have a different concept of time and place. I didn’t want to take this fast train in the first place. I never ever wanted to end my life like this. My life was generally happy until I got into the

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hideous cancer battle. I know that I don’t have much time left on my hands. I had more than two years of cancer treatments… that was a kind of waiting period between life and death. (Dong)

Certainly, I wouldn’t like to be awakened in a different world, feeling unprepared and horribly surprised. I am going to make my list with short-term goals and timetable for things that I must finish before I die. I don’t have much time left to live. Now, what I really want is to get this losing battle over. From my experience, running extra mileage without filling engine oil or over-filling engine oil would both ruin the whole system of the car. It’s all about right timing. I do not wish to linger in this world when my time is over. I may not be perfectly ready to leave. But, the important thing is that my broken body and mind will be replaced and filled with better and nicer things by God. I am ready for that. (Hoon)

I have been attending the hospice program at this hospital for three years. After the three years’ program, I consider myself as a half-hospice specialist. I am still going to the program because I don’t like sticking around in my room all day long. I have seen many people dying or dead. I think I am ready to take the next step. One thing that I am grateful for is… at least I don’t have brain cancer. It could have been worse… like having multiple cancers in a short period of time. My kids will be better off with their mom. I have never been a good role model for my kids. (Jo)

If I lost my job, I wouldn’t be able to continue my current cancer treatment. Without the health insurance benefit from the company, it would be extremely difficult to keep going to the expensive medical treatments. I don’t want to leave any debt on my account. My wife would argue with me but I’ve made up my mind already. I am ready to accept the reality. I won’t be here when my kids have some significant events in their lives. But, the important thing is the fact that they will grow up and get married whether I am around or not. After lunch time, the weather was quite nice and I was sitting in the sunny side of the hospital garden. I could feel the sunshine on my face which was very comforting. The peaceful sunshine enlightened me on the most important thing. What I can do is to live in the present as long as I have a heartbeat. I am ready to prepare my last journey. (Yang)

After the very scary episode of bleeding, I got platelet transfusions. This time… when I am discharged from the hospital, I will seriously tidy up my room and prepare myself for my last trip. Preparing for and thinking of death and my funeral were things somewhat abstract until I had the massive bleeding episode. I used to get really upset when people said that I might not have enough time to go back home to make a big final decision. But, I now see the point. That frightening experience could be the small beginning of the big ending. I should be more seriously preparing for my last moments from now on. Yesterday, I watched the news telling the deadly outbreak of human- to-human transmission of H1N1 flu. I thought… dying of cancer could be a lot better than dying of sudden, acute disease. In the case of cancer, at least, I can buy some time to prepare myself through the cancer treatments. As time goes on, I am getting used to living with cancer. I am also becoming more comfortable talking about the thin line between life and death. When my time comes, I would like to ask my wife to bury me in my Hanbok (translation: Traditional Korean clothes) instead of wearing funeral clothes. I also want to be buried with my favorite Bible. I hope my family and friends remember my last time in this world as a meaningful moment. It may sound silly: I would like to ask to put a silver spoon and a pair of silver chopsticks in front of my casket. At my funeral, people will see my favorite silver utensils placed in front of my casket. Everyone at the funeral will be wondering: what’s with the silver utensils? Many people will be asking the same question passing by the casket. When I was a little boy, whenever I was invited to someone’s feast, my mother reminded me to keep my utensils until the feast was completely over because there were always some better things coming later after the routine main dishes. I learned this from my mother as wisdom for my life. I want to make a list in order to prepare my funeral including the guest list, the living will or the obituary. Currently, my short term memory is not good. So I record my ideas on the voice recorder before I forget. My kids are helping me record my messages by using their iPods. Working with my kids to prepare these things also helps me sort out my thoughts more clearly. My kids and I are spending a lot of time lately rearranging the pictures. I have never felt so close to my kids until this moment. (Jin)

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It sounds strange but it’s true that I feel more comfortable talking with someone who doesn’t have a relationship with my family. My care team or a psychiatrist could be a helpful resource but they don’t know me like I do. Who could be more knowledgeable about my deepest heart than myself? One day, I lost my house key. I looked everywhere but I couldn’t find it. When I almost gave up, I felt something in my back pocket and there it was. I believe... most people have the answer key in their hearts. Just we don’t know the fact that we already have the answer key in our hearts. I think... sometimes just talking or expressing my feelings could be enough to find closure. Whenever I finish chemotherapy or other cancer treatments in the hospital, I feel that I am paying my mortgage. I am still able to pay my bills and mortgage which means that I am doing my job well and that I am not getting behind in my due date of payment. I strongly believe that… losing my life would be much easier than losing my kids. I may have some regret about the fact that I have to leave earlier than many other people. While many other young fathers are still enjoying their prime time watching their kids grow up, I have to prepare to leave by closing the curtains for this chapter of my life. As time goes on, I feel less and less angry about this unfair situation. As I always did, I would like to consider my early departure as a kind of pioneering… brave preparation for my family in heaven like Jesus did for us. I wish I could hug my kids every night and stroke their heads every day. Whenever I have some free time, I am trying to keep writing my daily journal so that my kids can read it after I am gone. I think… that God gave me a mission to show very important and unchanging things in a changing world: how to fight bravely against difficult…and how to admit the limitation of being a human being… and how to prepare ourselves quickly for untimely death… and more importantly… how to tidy up our current places and move to the next world with a one-way ticket. I think God is trying to show me the fact that death should also be considered as a part of my life... not a total failure or a spooky thing. (Kang)

If I had worked three more years in the company, I could have received more benefits with a sizable pension until I reached 85 years old. I don’t think that I need to worry about my uncertain 80s especially when my current time is running out quickly. I am going to make an important checklist so that my kids and my wife won’t be so panicked on the day of my funeral. I have read a lot of books about making the list: what to wear, what kind of funeral service I want to have, who sends out the obituary notice, who should be on the mailing list, what kind of burial plot I could have, who is going to open and read my living will, and what to engrave on my tombstone. My favorite flowers wouldn’t hurt my feelings when I leave this world. After years and years, why am I still seeing the woman whom I loved in my dreams? I can’t explain why. I wouldn’t mention my significant person’s name in any part of my will. At least, I can respect her honorably. At least, I can appreciate her presence in my past as my best friend from my childhood until my late 20s. By taking her name silently to my grave, I will complete my duty for my wife and also for the woman I have loved. I am ready to return to my eternal home. On the way to my last home, if I ever have selflessly done some good things for others, I would like to consider this dream as one of the emotional rewards for me. I don’t want to have a sad funeral for myself. In fact, I feel much relieved now after talking about all my stories. (Yul)

I have already sorted out my thoughts. Most of my property and my belongings I will leave for my wife. After my funeral, if my wife wants to give some property to my kids, I have no objection to that. But, my first beneficiary should be my wife who has been a good friend and a good companion over the entire 40 years of my marital life. She could have ended our marriage a long time ago because of the dissonance in our relationship, but my wife was very patient. I am very grateful for that. I thought my present life would have no end. I thought I am the one who can decide my time for leaving the stage. I thought I could find my own exit sign rather vividly compared to others who have to face death unexpectedly. I don’t know how and when and where I can rest my tired soul in peace. The truth is… I want to rest… I am ready to rest. (Sung)

I used to drink a lot of chrysanthemum tea to ease my headaches. But I can’t drink as much tea as I used to because of an ascites problem. I do like chrysanthemum flower but I don’t like the big, white, ugly chrysanthemum flower because it looks scary. I know a white chrysanthemum is the most common flower at a funeral home but I don’t like that ugly one. I prefer having a cozy, mini- chrysanthemum flower basket at my funeral and it doesn’t have to be all white. I would like to have

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some pastel yellow and pink chrysanthemums around my tombstone. When the time comes, I know I can’t delay it anymore. This may be my last visit to this hospital. I don’t want to close my eyes in the hospital, when I am moving forward into the next world. I would rather close my eyes on the pillow that my wife made for me. Sometimes I see a shining harbor in my dreams. I hope my last journey will meet fair winds and calm seas. I have the feeling that my wife might be waiting for me at some place where my last voyage is docked. Yes, I miss my late wife very much. I would like to meet her after this world, by any means, to say to her that I cared about her very much. I would like to say that the extra time and days given to me after her death were very boring and nothing was exciting without her. I am ready to meet my wife in the place where she is resting her soul. I am getting ready to prepare my last trip. No matter how late it was, I tried to come home to get some sleep on my pillow that my wife made for me. I don’t think that my cancer treatments will show miraculous progress. I don’t expect that miracle could impede my last sailing to the next world. I will be 80 years old if I see 2 more spring seasons. Yes, I can tell with my eyes closed… it must be something very greedy if I make it to live until my 80s. I believe it is the right time and the most honorable time for an actor to leave the stage when everyone’s still clapping their hands... in other words, when everyone is still missing me sincerely. I am ready to depart to the next world. About my current cancer treatments, those treatments have been just good enough to prolong my life for three years. I think that should be enough for me. If I had known about the cancer treatments earlier, I would never have agreed to receive such a painstaking procedure. Haven’t I had enough? Yes, I believe… I have had enough. I know the newest cancer treatment method would give me several months more to live … at most, by draining the bank account of my kids. And I would still say that I didn’t know the consequences? That would be so selfish and irresponsible of me. That’s why I don’t want anyone to attempt to resuscitate me when my breathing stops. Because of my ignorance and stubbornness regarding the cancer treatments, I don’t want to bring a financial problem on my kids’ shoulders. Regardless of the money problem, liver cancer itself already is a very impossible disease to overcome. This is common knowledge. There is no cure. I don’t want to receive an unnecessary and expensive procedure anymore. I would rather prepare myself to meet my wife again in paradise... instead of holding on to my life in this world. (Lim)

Since the cancer diagnosis, I think more carefully about what I must do first, given the very limited time frame. I feel that I am using a highly concentrated small bottle of laundry detergent. I only have one bottle of laundry detergent left so I shouldn’t make any clumsy mistake and I shouldn’t spill it on the floor. Measure twice and use it very carefully for targeting the most needed stubborn stains. I may not have plenty of laundry detergent to use, but the important thing is the fact that each portion could be much stronger than regular laundry detergent. Now, I see more clearly that I am living a ten times concentrated and condensed time frame compared to other people. There must be a reason that I was diagnosed with liver cancer. And, there must be a reason that I have three brothers who are suffering from the same illness. I believe that things always happen for a reason. No matter how many hours and efforts I am able to put together, I am only a human being… mortal. I know… even a person in the highest position, like a president, cannot go into the next world freely. Besides, I don’t want to be meddling with God’s plan. I have just returned to God because of my cancer treatment. I don’t want to go back to the way I lived for my entire life. (Gil)

When I still have some strength to think and talk, I would like to donate some of my properties. I must do it no matter what happens. This is clearly related to parenting… some unseen precious thing that I can give my son. The rest of the things like chemo and radiation are not important now. I don’t want to make more problems when there is already chaos. I hope my next life will be a lot easier than my current life. Cancer progression… this was out of my reach. Normally I am very much interested in finding out the problem and the solution for that… but I’m exhausted now. I don’t think I can fight back again this time. It’s been two years… this cancer thing has been like a big splint in my palms. I am ready to get this over with. (Jong)

I carry a disposable mask and a pair of gloves in my pocket so that I can use them when I go out. Last week, I ordered another box of disposable masks and gloves. Whenever I order some disposable supplies, I only purchase one box of them because I think that each purchase may be my last. I don’t want to purchase some extra supplies because I don’t want to leave any painful memories attached to

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these objects when I suddenly have to leave this world. I don’t want to leave anything behind that may be a reminder of my long, painful, and rough cancer battle. When my time comes that I absolutely have to return to earth. I don’t want to leave any kind of untidy marks. I feel that I am getting close to the place where I came from. I feel that I am going back to earth… to Mother Nature. I don’t want to keep insisting on receiving aggressive cancer treatment with heavy dosage of chemotherapy when the chance of survival is rare. When we see the sky getting gray or dark and the wind getting stronger and chillier, we know that a snowstorm is on its way. I know that, when my knees and joints are hurting, heavy snow is coming within less than an hour. I can’t explain logically how I know that but I know what I feel. Considering the fact that I feel my level of Chi is getting weaker, my time is running out and my body is ready to rest in peace. I was born, I have lived, and I will die. That’s the most mysterious common denominator for everybody. Based on the Feng Shui theory, my late husband picked auspicious site for me. I never understood what he told me regarding Chi or Feng Shui theory. I like the burial spot he picked for me. I do believe there is some good purpose for my having lived in this world. I don’t think that I will see next spring. I have already cleared up my room and clothes and shoes either to throw away or to give to the poor. I would like to spend my last night in this world at home rather than in a hospital bed. I don’t want to end my life by my own hand. I will keep going until I reach the safe place where I can really rest my body and my soul in peace. I believe… when I smile, my body smiles including my invisible soul. No disrespect to my care team, but I believe that I am ready to get into my new boat for my last journey. (Jeong)

I am 71 years old and I am not expecting that I can have perfectly peppy energy every day. I am not afraid of letting my friends and neighbors know about my illness. Even if I had extra money in my pocket, I wouldn’t like to uselessly spend that money for seeking more cancer treatments. I am not giving up my life but, at the same time, I am not against the natural process of dying. God gave me life and a decent wife. I don’t want to give up my life hastily. For me, living with liver cancer is like… receiving the invitation letter to heaven… the confirmed invitation letter signed by God. I am ready to open this envelope. I am not complaining about the fact that I am getting close to the stairs of heaven. Considering my current symptoms… such as breathing difficulties and a swelling face and extremities, I think I have to prepare myself very soon. Of course, the circumstances that I am encountering are very sad. Regarding the daily routine in the hospital, receiving cancer treatments or going to another testing room, I don’t want to put too much meaning into it. I am ready to replace the current address with my cosmic address. I’m not afraid that my time is running out. Facing and meditating on the process of my own death will never be a good theme on which to spend a lot of time. But, I know that I must do it. I should get ready to pack my last suitcase for my non-returning trip. I am not trying to find philosophical, difficult answers. I just want to face my true self… who I am… where I am going. One thing for sure is… my life in this world will be over. It will be finally over soon. How dare I turn back or stop the time? I have to now and I am ready to keep moving forward. I am not complaining about that. As a matter of fact, I should be grateful to God for the fact that I have been kept alive five times longer than I was supposed to live. Even if I were able to return the time and even if I were able to reset when all this happened to me, I don’t think that I could make a huge difference in my life. From my experience, it is much more natural and less painful to live as flowing water and blowing wind than against God’s will. The way God sent me the invitation letter was rather dramatic but in due time… I mean… in God’s time… God will take away my pain and shame so that I can spend eternity in peace. Knowing God is the most important purpose and meaning of my life, the other things like money and fame are not important to me anymore. I know I can’t take anything with me on my last journey. (Taek)

To my wife, I apologized for the reckless behaviors that I had lived… drinking, being unfaithful as a husband, ignoring my wife’s grief, and things I couldn’t remember but through which I might have done something wrong to her. We have never spoken about the child we lost in a car accident a long time ago because it was too painful to bring up the subject. But, deep down in my heart, I have never forgotten the child and I am sure my wife has never forgotten the child either. I made my youngest child wait too long as a parentless child. Now, finally, I am on my way to meet my baby boy. (Myung)

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After years of careful consideration, I have made up my mind. Yesterday, I signed my living will and I also signed the DNR (Do Not Resuscitate) document. I’ve decided not to prolong my life by expensive mechanical ventilator when my time is up. No one must find out about that. I must make sure no one finds out about it until I absolutely have to tell it. I don’t have great hope for my current cancer treatments. I only go with what is happening right now… just to set a good example for my kids. (Noh)

I am very much aware of the fact that I am dying and I will be returning to the earth soon. I don’t believe in miracles. If I have to go this way, I will. I have had enough trial and error for two years of cancer treatments. If my blood or immune system is not strong enough… then so be it. I don’t want to beg to merely extend my life without guarantee of having good news. For two years, I have already completed my share of long-distance running. I don’t want to make more excuses to extend my life. This morning I talked to my wife about what I had in my mind… about not seeking more aggressive treatments. I don’t want to give my wife false hope when my situation is obviously hopeless. If I insist on going on the new cycle of chemo, it would be against all the rules of nature. I’m 70 years old. Considering my current complicated symptoms, I think that I need to prepare for my last moment. When I have the flu, I frequently have a swollen mouth and red spots on my legs. The wound from a thorn festered. When I have a needle puncture for blood sampling or receiving medicine, I have skin problems. That’s right… my health is deteriorating. I should get ready to move toward the next world. My wife said that I didn’t need to worry about anything and just focus on restoring my health. I am sure she meant well. A man of my age, in the 70s, it would be greedy to seek more cancer treatments. (Park)

As far as my annoying neighbors, I mean the church people, my being their neighbor must be a pain in the neck. I am not defending what they have done to me such as hogging convenient parking spots and disturbing my sleep. Now, I think… they may not mean to disturb me. They may just want to seek God’s help at night by singing. When I leave, I don’t want to carry with me the disturbing feelings or anger or hate. (Seon)

I have been talking and listening to what other patients are thinking about the cancer treatments. Yes, I’m not afraid of death. I am thinking to sign the DNR form. I wouldn’t like to merely extend my life depending on the mechanical ventilator. The decision needs to be made very soon. I am not afraid of death. But I’m more worried about slowly dying… the painful dying process. Living with liver cancer... it’s like the big elephant in the room that no one wants to talk about. About the disturbing thoughts or a fear of slowly dying, I think I am ready to discuss my current distress. Probably… what has happened and what is happening now… is meant to be… nothing that I can control. The wisest King Solomon who had a great power and Samson who was a fearless warrior…they all had an unconquerable problem: death. How can I be an exception? (Hong)

Well… cancer treatments sound very depressing and painful. But, there are some positive aspects. Living with liver cancer has given me a chance to reflect on my entire life. Liver cancer… I know there is no getting through it. Facing the true reality courageously has taken me more than two years to learn. I am thinking of writing my living will tomorrow. I would like to leave my life insurance benefit to my wife. By leaving the life insurance benefit to my wife, I could leave this world a little bit easier… with less guilty feelings. At least I would like to give some solid thing to her so that she could live her life decently after I am gone. (Joong)

My doctor told me… if cancer cells were found in my brain or other sites of my body, I would normally lose my eyesight or my legs would become paralyzed. I have come to a conclusion: the heavens are the only physician to cure my current illness. After I am gone, my husband will help and look after my baby girl’s new nest. I trust my husband that he won’t let me down. I know that I have to prepare myself soon. I know there is no medicine that can cure me completely. I am going to die eventually. Whatever outcomes… it is heaven’s will. I don’t expect to be cured. I am gradually preparing myself… tidying up my closet… cleaning up the basement… and rearranging the kitchen. Keeping my hands occupied makes me calm and helps me cool down my troubled mind. My current cancer treatment has cost me the loss of my sense of taste and strength but it has kept me alive so far.

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I expect no more. May the Divine Creator help me to carry away all the pain and frustration that I have caused my family… and all the confusion created in my youngest daughter’s life! It has been a long journey together. I have run a long race for two years with a positive attitude. Wasn’t I a fine patient? If I must go now, then I believe it could be the will of heaven. (Kyu)

Connectedness to Someone or Something (n=33)

Other patients who were admitted to the same room… saw me turning all night. They helped me understand that I was not alone and they told me that there were lots of other people out there who were in the same or even worse situation. Sometimes… patients who are in the same room give me more comforting support than my daughter-in-law does. This feeling of connection to other patients… keeps me abreast of what is going on. Yes, like other patients said, I am not totally alone. I am not the only gargoyle hanging... dangling under the roof in ruins. Nurses gave me much information about counseling or group therapy or group meetings with patients who were diagnosed with the same cancer as mine. I was there last month and I will attend the meeting this month. It was a very comfortable atmosphere and there was no need to be ashamed of the disease. I didn’t have to cover my mouth when I had a big sneeze. I didn’t have to wash my hands twice or three times before shaking hands with other patients. I think… attending a hospice program or interaction with other patients at a meeting provides me with another type of catharsis. Looking back on it, it was sometimes… actually most of the time… it was very nice to express what I was going through to other patients. I... we ... cried... almost sobbed our hearts out for a while. And often I found my eyes turned red but it made me feel much better after getting everything off my chest. When I am in the liver cancer education program, there is no need to worry about the fact that the nature of illness or my poverty might be revealed. No need to worry that I could also be on the chopping block in public. A few days ago, I met my mom in my dream... smiling at me. I have always been afraid of the death and dying process since I lost my mom when I was a very little girl. Yesterday, I saw my mom again in my dream. She was stroking my head very gently... gently... just like a spring breeze. I admit that I am still feeling tense about death and the fact that I am dying... but it doesn’t scare the hell out of me. I have a strong faith that, in the very near future, I will meet my mom in heaven where there is no pain... no tears... no sad farewell. (Hoh)

Many of the patients that I met during my hospital admission are no longer coming. I didn’t ask…but I knew what might have happened to them. I just knew that they must have passed away. They were patients who were in the same room where I was. We sort of became friends, even though I knew I would never meet them again. I have been coming to and going from this hospital almost three years now. I know most of the doctors and nurses who work here. This good relationship… I should say positive interaction helps me preserve and recover my strength. When my kids were little boys, I was their protector and nurturer. Now, my sons are becoming caregivers. Of course, they are looking after me. The interaction... this man-to-man interaction with my sons.... sometimes talking on the cell phone... texting... this kind of good interaction generated a sense of connection... a sense of closeness. I may not be here to see their success but I don’t mind leaving this world earlier than others. I would like to believe that my life-time dream won’t vanish in vain even though I am gone. I believe if I wish hard enough, someday my dreams will come true through my sons. (Kap)

I had a moment of clarity… thinking about my life and my parents and my hometown where I grew up. When I took a nap, I saw a little creek flowing around me so peacefully… the little creek where I used to play with my friends. I feel that I am slowly returning to the place where I came from. In the dream, I found many warm pebbles by the stream and I picked some of them up in my hands. The day I experienced a long procedure under general anesthesia, I saw my parents through my closed eyes. Both of my parents died a long time ago. They entered the procedure room and found me lying on the table and held my hands so gently. I felt someone was wrapping me in a warm blanket. I thought it was my mom. When I opened my eyes, I was in a hospital room and a nurse was checking my pulse and covering me with a blanket. (Hak)

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When I was sick as a little boy, my mother always found the way out and I have learned a lot from her. How to make my stomach more comfortable while recovering from a serious flu? In my dream, I felt my mother’s hands rubbing my tummy and I got better. I believe someone’s good energy can heal the sick. I am not afraid of the fact that I am dying. I have a strong faith that my mother will be there for me to ease my pain. (Choi)

Before my next cancer treatment strikes me down, I would very much like to see my hometown and the small creek where I used to swim naked with my friends when I was a little boy. I often see the creek in my dream. Whenever I went to my home town, I noticed some change in the place like a factory building or a big straight road… or westernized houses. I don’t like that. I like strolling on the long and winding road, breathing some fresh air. The air there is so different from the air in the hospital. I need some fresh air to boost my Chi. One crisp, clear summer evening after visiting my parents’ grave, I was sitting on the hill to take a break and there it was. I saw the beautiful sunset which was the most beautiful I had ever seen in my life. I had to shield my eyes against the dazzling, declining sun. And I realized that I could leave such a touching impression when my sun… my life goes down. I realized… it’s not only the rising sun what makes a touching moment… but also the declining sun can make a beautiful reflection on the river. I only saw the darkness around me but I can see something… something more than the darkness. Every year, I am sure my family will prepare the ritual ceremony table in memory of me. I may not be physically here with them but they will remember me and cherish the good memories that we shared. (Whan)

I often think of my mom who died a long time ago. I saw her in my dream last night. I sat on my mom’s lap for a long time. And then I woke up. I miss my mom very much. (Mah)

My wife was buried at her family gravesite and her family allowed me to rest my old body at the place near my wife. I didn’t expect to be accepted by my wife’s family but… at least… they allowed me to use their family gravesite. I have already bought my funeral clothes. The end is near and I am ready to meet my wife in heaven. (Ryung)

Yesterday my wife washed my face and hands. She looked a little bit tired. She asked me how I was feeling. I didn’t answer her. I thought in my mind: ‘I’m fine. I don’t feel hurt, lonely, cold, or sad because I’m with you’. My wife has been with me all the time…day and night. I feel that there is some string connected between her heart and mine. In her memory, I am sure that I will live for a long time until she comes to the place where I am. (Choo)

My wife has been a good companion for me… all the time. I haven’t had a chance to express my thanks to her. Probably, I should say more often that I am sorry for leaving her here alone. When my wife comes to see me later in heaven, I will say sorry again. (Seong)

I will be 60 years old at the end of this month. Several months ago, my son and I climbed up to our family mountain to look at the place that I picked to bury my body later. I like that spot that I picked. It is a nice place surrounded by beautiful pine trees and it is a sunny spot even at the time of sunset. The view opened out before me as I reached the summit of the mountain. I grew up there until I entered high school. Standing at the spot, I was able to see the big road that leads to my home town and the other big road that leads to my current house…where my wife and kids are living now. I believe… I could see my kids’ weddings or birthday parties from the spot where I stood even if I was not there. (Kyung)

When I thought I was going to die soon, I ran back to my Catholic faith. I was born into a Catholic family but I had never sincerely practiced it at all until I was diagnosed with liver cancer. Now I’m going to church every morning to attend Mass. I am also participating in liturgy and helping out with Eucharistic ministry. It helps me go through a life-threatening crisis. I made some friends during my hospital stay. We were interested in having conversations about faith and forgiveness and life after death. The good thing was that I didn’t need to lie about my past or I didn’t need to hide my failure. It was a comfortable talk and there was no need to be ashamed of my illness. A friend that I met at the hospital church shared his secret method how to get through the chemotherapy and how to comfort

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the stomach. That was very helpful for me. A dry cracker and plum candy is very useful to ease my stomach and to distract the nasty chemo smell. A hand massage on a certain pressure point is also quite helpful. As I travel on the train, I believe that my body goes through a dark tunnel to reach a brighter place where my beloved family and friends are waiting. I have made all kinds of mistakes here. I would like to help newly-diagnosed people who need to figure out what they are supposed to be doing at the end of life. I believe… my wife and kids will be with me whether here or in another world just like. (Young)

I know…I should stay calm and I must remain strong. I don’t know yet how long I can live or how many chances to see spring flowers I will have. I want to have some good memories with my wife so that she will remember me after I am gone. My wife is probably heart-broken over this long-term illness…so I would like to do some nice things for her. I don’t want to cause any more burdens to her. I believe…both good and bad memories are equally important for me. Although the memory of the cancer experience wasn’t one of the nicest in my life, I learned a lot from it. (Jang)

I wouldn’t mind having a new companion on the way to my last exit, sharing my feelings and recognizing that there are many people struggling with the same problem as mine. I believe… I am not the only liver cancer patient who is experiencing impending death. I believe my last trip won’t be entirely alone. (Keun)

I wish I could give more hugs to my son even though I’m uncomfortable and in pain. After I’m gone…after I’m gone…will he remember me as a mountain that shielded him from the freezing wind of the world? I hope he will remember me so that I can live in his memory. I am going to leave this world soon. I believe… although I won’t be here with my son physically, I will be with my son always. (Sun)

My daughter has my eyes and personality. At least, I am leaving some memorable things for my husband so that he will remember my face when I am gone. (Ae)

I love singing songs and playing the piano… and watching movies. I found those hobbies made me more comfortable than religious preaching. I miss my grandmother so much. I wish I could see her in my dreams during my sleep. If I must die of cancer… if death is inevitable, I would like to consider my current journey or road as enabling me to see my grandmother. I would like to consider it like that. Often I imagine that my grandmother will be waiting for me in front of the door of paradise. (Hee)

When I meet my wife again years and years later in another world, I would never ask her to marry me again. I don’t think that I deserve her. But, I would very much like to meet her there again. Every time… I wanted to go to the bathroom with all these lines and bottles, she never hesitated or complained about that, going to the bathroom with me day and night. (Dong)

I was looking for someone who could listen to my side of the story without criticizing me. I find… sometimes… that a complete stranger like you can be a more comfortable listener. I find solace in conversation and interaction with a non-judgmental listener like you. One evening after the routine care, I was watching the sun goes down. Suddenly, I felt that my life was also getting close to the end as if following the setting sun. During my childhood, I used to spend a lot of time on my parents’ farm. My son and I used to go to the farm almost every summer vacation. At night there was an ocean of fireflies. It was one of my fondest memories that we shared. Most of the time, I don’t remember what I saw in my dreams during my sleep. Recently, I saw a beautiful farm in my dream and I looked a lot younger and happier than I am. It could be a sign that I am gradually getting close to my Maker. It could be a sign that I am going back to where I came from. (Hoon)

I have no religious preference. I don’t think there is one almighty power who can give me eternal life. I have no intention of seeking or begging to be granted undying, immortal life. All I know is that Christianity makes my wife a lot happier and stronger during my liver cancer treatments. Even the day I threw my pillow at her face, I saw that she was actually writing a prayer journal for me. I was wondering what made her so different from other women. I wouldn’t like to change my thoughts by

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force and I don’t have the intention to receive a free gift from God in whom my wife believes so sincerely. Although I wouldn’t dare ask my wife to take me to church, I’ve always wanted to be there with my wife. I hope to meet my wife again somewhere after this life. (Jo)

My kids look exactly like me… they have my eyes. Even though I am dying, after I’m gone, my kids will live with full happiness. I hope my wife and relatives will remember me whenever they see my kids who inherited my eyes. At least… in their memory, I believe the trail of my life will remain as a part of their lives. (Yang)

At least, I am not alone in the hospital; there are many other patients who are suffering from the same problem as mine. (Jin)

I don’t think that I have to leave some material things for my kids. Instead of leaving big money, I would like to give my time and love and sincere promise for the fact that we will meet again in the Promised Land… I mean in heaven… decades and decades later. We don’t usually use the word “heaven” or the opposite place at home because… from my childhood experience, heaven always reminded me of the painful death as a preceding image. That’s why I prefer using ‘A Promised Land’ instead of the word ‘Heaven.’ If I must leave something for my kids, I would like to leave some nice images of a father by setting a good example… even until death. I would like to be remembered a father who lived his life honestly. Yes, I would also like to be remembered a father who died peacefully and with dignity. (Kang)

I know red or pink roses don’t usually go with a serious funeral. But, I would like to ask my kids and my wife to put a lot of pink roses and my favorite book of poetry in my coffin when I leave. When I was 24 years old, the pink roses were my first and my last flower that I ever received along with a moonstone ring from my very significant person. I thought I had forgotten everything that happened between my significant person whom I have loved for a long time and me. Even though the relationship never worked out the way I wanted, I must have kept good memories in the deepest place of my heart. Ever since I knew my diagnosis, I really wanted to find and see my significant person one last time. Yes, I have loved her for my entire life and I often think of her favorite food and the places where we used to go together. I have missed her smile which was like a white magnolia flower in full bloom. When we decided not to see each other anymore, I wrote a poem for her as the sign of appreciation for being with me. My first poem that I published in a magazine was also about her. Yes, I saw the significant person whom I loved… in my dream yesterday. I will not seek the woman I have loved. I wouldn’t do that intentionally to see my significant person one more time before I die. But I have a strong feeling that I might have another chance to see her after this life in the place where there is no pain… no separation... in the place where there are a lot of white magnolia flowers. (Yul)

I have strong feelings that my brothers and I will meet again in another world after death. I would also very much like to see my wife again after death in some peaceful place so that I can at least apologize for leaving her here in this world alone. I feel relieved seeing my wife looking after my kids so sincerely. I trust her with my life. I have faith in her that she will carry on her duty as a mother until her last day in this world. And I have no doubt that my kids are in good hands even if I am dying. (Sung)

My wife who left before me must be a lot braver than I. I see my wife’s smiling picture every night before I go to sleep. Yes, it is a hundred times more effective for my insomnia than a written charm or a strong pain killer. If everyone left this world whenever they wanted, no one would be left here. That’s why we all have different departure times to the next world. When my wife died, I wished my life could have been over immediately after hers. But, I’m still here… alive. Every morning I open my eyes without my wife and that is a painful thing. I don’t believe in God… I mean a Christian God. But, I do believe there must be someone who has a higher power up there to help me find my path correctly toward the place where my wife is. I wish I had just a little bit more time to reflect on my life. I wish I had a balanced daily practice of deep meditation… to help me move forward into the state of transcendence like Buddha. I’ve never been so religious until my significant loss… my wife’s death. I don’t want to convert to a completely different religion from the religion that my wife had. I

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am afraid of the fact that… what if my wife and I would end up in two completely different places because of the religious differences? That’s what I am afraid of. I don’t want to end up in heaven alone without my wife and my deceased family members. (Lim)

My husband and I didn’t always agree with each other but he was a good man who was very supportive. I believe that my husband and I must be connected on a deep spiritual level… like a soul mate. I wish he would be here with me … in these long… difficult cancer treatments. (Jeong)

During my sleep, I saw peaceful stairs surrounded by sparkling green ivy plants and vivid pink morning glory flowers… the stairs started on the seashore where I stood and continued toward a dazzling white cloud in a bright blue sky. I didn’t see my wife in the dream but I have a very strong feeling that the morning glory flower could have been planted by my wife for my last journey. On our weekend farm, before my wife died, she planted many morning glory flowers reaching from our farm house all the way down to the weekend farm. When I woke up, I was still holding my wife’s picture in my hand. (Taek)

Many times I have seen that my wife was gently humming a song while she was cooking or sewing or doing laundry. My wife used to hum this song all the time to ease her grief ever since we lost our youngest child. The title of the song is ‘Our being together here’. Now, my wife is singing the same song for me, stroking my head: ‘Our being together here is not coincidence. Our being together here is because of our sincere unspoken longing. Do not look back to the mistakes! Do not regret the past! Do not show futile tears like a cry-baby! I love… I love... you… more than ever.’ My wife must have been singing that song a thousand times when she was alone to ease her grief. I have heard this song several hundred times but I never understood the meanings of the song until now. My baby boy, my wife, and I... we must be connected through this song. I was standing on the rooftop at night and I was thinking of my youngest son. It was freezing and very dark. All of a sudden, I saw a shower of shooting stars flying in the sky. I was so glad to be there as if I had met my youngest son again. As a 5-year-old-boy, my son must have been a lot braver than I. To me… now… death and dying is another important mission given by God to be back on the path to find my youngest son. My youngest son gave me the most amazing gift for Parents’ Day. What can I give my baby boy when I see him again in heaven? I am thinking to ask my wife to put some nice soap in my coffin when I leave… so that I can wash my son’s feet as he did for me. When I see my youngest son in heaven, I will hold his hand very tightly and I will never lose him again. Unlike my other sons, my youngest son had a full, beautiful emotional quality. We used to go up to our rooftop on summer nights to count the stars. His dream was to become a pilot so that he could travel all over the world. Several days after this Parents’ Day, my son died in a car crash. Ever since that time, my wife and I never spoke of him until recently. Naturally, since my liver cancer diagnosis, my wife and I started talking about my youngest son again. From my wife and from my older sons and from my neighbors, I have many requests and messages that I need to deliver to my youngest son in heaven. Living with liver cancer and the dying process can’t be good events to celebrate. But, that experience makes me broaden my mind in a more generous way. (Myung)

For my kids, certainly I wouldn’t like to leave the odd image of a mother who gives up her life hastily to avoid pain. I raised my three kids to not hesitate going on the road that was less-traveled by people. Living with liver cancer until my time comes in a brave manner… that is the exemplary image that I would like to have remembered by my kids after I am gone. (Noh)

Every time I meet my best friend, I feel that I could forgive each one’s annoying behavior, hypothetically speaking… even if bad guys broke in and burned my little piece of heaven to the ground. I am a Buddhist. The Buddhist temple has so many good memories about my childhood and my parents. Interestingly, my best friend whom I sincerely trust is a Catholic priest. Often I visit the church where my best friend is. Being at the church or temple makes me very comfortable. (Seon)

To save everyone’s trouble in my family, for a moment I thought I could end this misery by my own hand. For a while, I carried a bottle of maximum strength sleeping pills in my pocket. And I thought of my kids’ faces. I came to another thought: if I end my life by my own hand just to avoid the fear of

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dying, what kind of lesson would that be for my boys to learn from me? So... I tossed out the bottle of sleeping pills. I would like to be a good father by leaving a strong, good image… by setting a brave example for them. We have good memories. The memories we have fill all the spaces and we live on with them. The longer I have lived there; the spaces become more filled with memories of trails. I don’t think I will be at my kids’ weddings. But the memories about me in my kids’ hearts… surely they will make me present there. (Hong)

My wife and I have been attending a hospice program and it’s been going on over two years. I am not surprised to hear that some patients are no longer joining the program which means they passed away. The hospice program may not be perfect but it helps me keep going… it helps me to not give up myself. Plus, when I am in the hospice program meeting with other cancer patients, I don’t have to explain what kind of cancer I have or how I ended up here. It makes me comfortable. I think my wife knows and sympathizes with the pain in my body and in my mind more than my care team members do. I have never felt close to my wife until I was caught up by liver cancer. Living with liver cancer and surviving a lot longer than I was supposed to… I believe there must be an important meaning in that. (Joong)

When my kids were young, I used to make a promise to them that I would be at their side for 10… 20… 100 years. Surely I didn’t forget that promise. Even after I am gone, I believe that I will be still with them in their memories. In their good memories, I believe I will be living forever until we meet again in paradise. My kids and my husband have always trusted my meager capabilities… they have given me countless signs of their love… which is more than I deserve. There has been so much fear… loneliness… and sadness… on my path. But I was able to endure it all because of my kids. They are truly great kids and they are truly lovely. For that… I am blessed! (Kyu)

Life Satisfaction (n=25)

During my whole life I have raised my family and I have been a good provider. I was assigned to a remote area to build new roads or buildings. I have never complained about my responsibilities as a father and as a husband. For my entire life, I was very busy… running my small construction company. I often used to say: Is it Friday already? Where did my time go? I didn’t even know if it was my wife’s or my kids’ birthdays or memorial services for my parents. Although I forgot to come to my kids’ birthday parties or award ceremonies, I believe that I have done my best to support my family. (Tae)

I have been working in the department of sanitation in the city. My job requires heavy manual labor. When I first started out working this job, I was barely out of high school. The monthly wage was not good but the benefits from the government were great. I had no problem with raising my family and supporting my son’s education until his freshman year in college. My family has been so much depending on my health and my capability to work. I only had a high school diploma but I have come this far with a decent job. (Hak)

I know… in the near future I have to leave my wife and my kids. As I am looking back on my life, my life isn’t a total disaster. I got married and have two kids. My daughter has her mother’s brains and she is very bright. My son is adventurous like me. We have never been wealthy or had expensive clothes but I believe we were happy… just loved being together. (Choi) I am not saying my life… the way that I have lived was a perfectly good example for my kids. But, I can assertively say that I haven’t done anything wrong to other people. So… I would like to say to my kids… at my funeral… that they won’t be ashamed of the man who was their father. (Whan)

When my time comes, I hope people won’t judge me by my swollen, yellow face. I remember that… someone said… living on earth is considered like going on a picnic. As a poet said, when my picnic is over, I’ll go back to heaven and say my life on earth was beautiful. I would like to say that. (Mah)

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I was so eager to see my youngest son’s wedding and I have done so. I was barely sitting and watching the entire wedding ceremony. I have completed my duty as a father. When my wife died, I made a promise that I would never give up on myself. I raised four kids by myself. My kids have a decent job and I am so proud of them. My youngest son is now in medical school and he will be a doctor soon. I don’t think that I have any more tasks to complete by merely extending my life. My wife taught me how to read and write, too. My wife and kids had experienced so many embarrassing moments because of my social rank. I worked very hard to earn money for my family. Even though I was illiterate, I saved a lot of money for my kids’ education. I didn’t want them to repeat or have the job that I had. I believe that I have done my job quite well as a father. I hope the future of my kids will be better than mine. That should be more than enough for me. If I collapse again, I don’t want my kids to sign the permission for reviving my life again. (Ryung)

I am 79 years old and I think I have lived my full life. I may not be recalled as a successful man but my life isn’t a total disaster. I don’t mind being called a lucky old man. Yes, I would like to enjoy the moment a bit longer until it’s proven that I am not lucky like… finding another terrible cancer in another part of my body. I have no regret. (Tark)

My wife brightened my dead life and gave me two kids. Even though I am dying now, I would like to leave some inextinguishable flint for her so that a small fire could come alive to restore her happiness. I survived one extra year as a gift. That’s enough for me. (Choo)

Many people misunderstand me, even my kids. They think that all I know is money. They think that I am very talented and I am very good at making money. But people should know that my talents were not in my skills but it was my persistent diligence. I have been living my 54 years of life always like that. I had some rough times in my business but I have never abandoned my responsibilities. Well… I must be the most tenacious and the strongest flower seed that blossoms even when I am thrown into the most desolate hopeless desert. Whenever I have crises, I always keep bouncing back to normal life. I have three kids and they entered college successfully, of course, with all my support. I believe… I have done my duty well to support my family. (Seong)

When my son was a little boy, I examined how he ate, slept, and everything else. I always thought about what my son should not eat and what kind of food was beneficial for my son’s health. When I prepare a meal for my son, I thought of his health day and night. I really wanted to raise my son as a healthy and happy boy. When I go to a shopping mall, I pick up my son’s clothes first even if I don’t have expensive clothes to wear. The happiest moment was the moment when I fed my son even though I didn’t have time to eat. As a mom, I believe I’ve done a great job. If my son can live a happy and healthy life because of my efforts, I would like to consider my life as a successful and fulfilled life. (Sun)

I feel as if it was just yesterday that my daughter took her first step and her first day when she entered elementary school and her first school trip… all those memories pass in a flash… like a quick film cut. Although my life wasn’t so easy, I would like to consider myself as a devoted wife and loving mother. I had looked after my father-in-law until he died of a massive stroke. I am a mother of three daughters and I raised them to seek higher education. Yes, all of them finished their college degrees and the oldest daughter has just finished her doctoral degree. I am very proud of them. I am also proud of myself who has succeeded in such an arduous job… parenting. (Ae)

My doctor told me that I might or might not have another year to live. What I had in my mind was: ‘Let’s work until I die and, if I am really lucky enough, I will continue working until I retire honorably with full benefits for my family.’ So, I continued working after my liver cancer diagnosis without telling anyone in the company. I survived three times longer than my expiration date. Recently, I had my honorable retirement ceremony. I have lived a good life for the last 60 years without losing my kids or family in a tragic accident. Most people who are living in this world will live at most until the 80s or until the 100s if they are really lucky. When I am looking back at my life, I would like to think of my life as not a totally unfortunate thing… compared with other people. (Jo)

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About two years ago, my wife brought the kids to a shopping mall before Christmas. Most of the kids sitting on Santa’s lap asked for some toys and gifts but my kids were different. They just simply asked Santa to see me and have some time together on Christmas Eve. When I heard this story from my wife, I was so touched by the fact that my kids wanted me instead of a bunch of toys. I was on a business trip and I was out of town. So I made a phone call and I talked to my kids for about an hour. Recently, I have been thinking of that phone conversation a lot. I am very proud of my kids. I believe... I have done, I mean... my wife and I have done a great job parenting and helping my kids get to this point. (Yang)

I am not angry with God. I am not angry with other people who will live and survive longer than I will. I think that I have lived my full life rather intensively… compared with other people who have a normal pace of life. I can picture my life as a burning candle… burning myself every day which means… dying every day. In my case, God only allowed me to use the candle for 55 years. I have no big regret about my life. (Jin)

I had my college education and I have a wife and good kids. I still have my full-time job. Yes, my college loans were paid off and I have almost paid off the mortgage on the house. Everyone has some moments of complaining about losing jobs or losing family members. I have lived more than half of the average lifespan of a human being. What more can a man ask for? (Kang)

Recently, I quit the job because I couldn’t keep up the same energy to handle the extremely stressful situation. I have three kids who are about to finish their college degrees. I think my responsibilities are almost done now. I have always been a good provider for my family. I tried to raise my family by giving up most of my dreams. By giving up many things, I was able to support my kids to get a college education. I think I completed my job as a father satisfactorily. I am truly grateful for the fact that my company has supported my kids’ college education. After quitting my job, I still have a good relationship with my co-workers and I even helped them pick my replacement for the position. They said they missed me so much. I would say that my life isn’t a total failure. I don’t have much regret about the way I raised them and supported them. I have never complained about the fact that my parents didn’t pass on a great fortune to me. I have never blamed my unlucky fate even though I was caught in the middle of economic crises facing bankruptcy with many problems. In fact, I am actually proud of myself who made my fortune by my own effort in spite of not being born into a wealthy family. (Yul)

It was very difficult to find a decent job right after barely being out of high school. I had no parental support… emotionally and financially. My siblings and I had to start finding jobs with absolutely nothing. No one handed me a good and decent job. The important thing is the fact that my brothers and I made it. For my entire life, everyday survival is like banging my head against a brick wall. Most problems that I encountered on the job… when everyone said they were impossible to solve… I made them possible. Literally, the word impossible was not a word in my vocabulary. (Sung)

I hope my kids meet a good spouse and live according to their good fortune… grow old… happily. After many years, when my kids have kids, they will probably understand what I am saying now. Fatherhood is a blessing which comes with a huge responsibility. Yes, my life has been blessed to be their father. Before I become too weak, I want to prepare a nice dinner table for my wife. Even though our marriage wasn’t our first choice, we made it… having kids and raising a family. My wife and I are more like friends. We didn’t know how to live differently. I don’t want to think my life is a pitiful thing. (Jong)

During my 75 years of life in this world, I was not always on an easy path. On the path of my life, I have had many twists and turns, a dramatic thunder storm, a heavy flooding, or scary hail. I have seen that famous people’s personal life, too, has many ups and downs. No one’s life can be perfectly happy. I have no regret. (Jeong)

I believe that I have lived a full life and I have completed my duty as a father and as a husband. (Taek)

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My husband has been very supportive and been with me all the time in spite of his busy working schedule. I know he is trying to do his best. Over 30 years of married life, my husband never made me cry. My husband never made me feel neglected. I am going to close my eyes very soon surrounded by my good husband and my precious kids. I think my happiness is complete… the happiness that is more than I deserve. Sometimes I thought my life was such an unfair thing. But, I have been living five times longer than I was supposed to. When I am looking back now, even if I have to leave this world tomorrow, there is nothing to lose and there is nothing to be angry about. There is nothing to be obsessed with holding in my hand. (Noh)

I have four kids and all of them successfully finished their college education and married. Now it feels like all the heavy burdens are gone! I can proudly say that I have done my job well as a father. I believe… I’ve successfully completed my responsibility as a father. I may not be able to pass on a great fortune to my kids. But, I believe that I have passed on to them the wisdom regarding how to catch the fish instead of handing over to them a bucket of free fish. (Park)

I have raised three kids and all my kids graduated from college and got decent jobs. Next year will be my retirement celebration. I am beginning to think that most of my work is done now. (Hong)

When I was first diagnosed with liver cancer, my doctor told me that I had about five to six months to live. I was so shocked but I came back to my senses quickly. I thought… ‘if five to six months would be my last living in this world, let’s do my very best until death.’ So I did… I lived every single moment as if it was my last given to me in this world. The following year, I got promoted to the department director position. I have worked very hard for my entire life in order to raise my family. I kept working hard, even during my cancer treatments, until my retirement ceremony. I have no regrets about that. I mean… the last thing… a man like me wants is to be seen as a victim or a loser. (Joong)

I was so desperately looking for a new job instead of going to see a doctor. So I got a new job which was as an insurance actuary and I have been working in the same company since then. In spite of my age, which was a lot older than other new employees, my boss hired me. I can’t even begin to describe the graciousness he has offered me by giving me a job and valuing my capability and trusting me. With all his help… like the scholarship benefit for my kids, I was able to raise five kids without a big difficulty. Last year, I quit my job since most of my kids have finished their college education, found a good job, and got married. I have no regret that I didn’t quit my job earlier. I believe that I have done my job well as a mother. Seeing my baby girl’s wedding is my biggest wish before I die. As a wife and a mother of five kids, I am thinking that my task is getting close to an end. I have lived my life honestly and diligently. As a matter of fact, I am proud of myself. I have always wanted to give my kids the most precious things I had. (Kyu)

Meaningfulness (n=14)

It took more time to go through all kinds of treatments or procedures… unlike other cancer patients with acute and rapid progression. When I was first diagnosed with liver cancer, I was very, very busy. But, after my first procedure, I really wanted to help people who were scared of liver cancer treatments. I did help several patients by listening to their stories. I am still doing it now. Although I had rough and rocky moments in my journey, I believe that I have been able to make a contribution through sharing my stories with other people. I believe that this kind of experience will help researchers learn something important by adding my stories and by learning from my inexperienced trial and error with which I had to deal. On my tombstone, at least, I would like to say that my life is meaningful. Talking to you… I found it beneficial for me to sort out my thoughts regarding my future goals and the way that I have lived my life so far. Now I am looking back at my life. My life was quite different from others who were born into a wealthy family. I should say that my life was nothing monumental nor dramatically enlightening for the world. One important thing that I have just learned about my life during this talk is the fact that my life was... is unique and non-replaceable. (Tae)

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I thought that my life was filled with unhappiness. I would like to believe that there must have been some reason why my late husband should be a part of my life. I have been thinking of him a lot lately. It gave me a chance to reflect on my life and what I have been going through it. Living with liver cancer really makes me think about what is going on in my life. I think the current cancer journey makes me more aware of what my old man had to go through. I think it is good for me to think over and over again about life and death. My life isn’t a total disaster. There were some silver linings even in the middle of a big disagreement or argument. My life isn’t so happy all the time. But, I do believe at least I have left some significant trails as a sign of my existence in this world. My children and my grandchildren and perhaps my great-grandchildren will live their lives happily. In their future happiness, my name... three words of my name will be there. (Hoh)

I thought I am no great man and my life is no good. For days, I couldn’t eat or drink because of vomiting. But my mind couldn’t be clearer. The day I started making a list for my son, I noticed that I have done so many important things that no one could have done as properly as I did them. I wish my son could understand the times. And I wish he could always learn from me so that he doesn’t make mistakes the way I did. I would like to consider my failure as a good reflecting mirror for him. (Hak)

I had a CT test yesterday and I am waiting for the results. I am not afraid of finding out the results…the results may be good…may be not so good. Even if the results show some disappointing thing, my expectation or hope or the life that I have lived here won’t be fading in vain, as long as my kids or my kids’ kids live on. (Seong)

One true fact is that we all die eventually. Even though cancer patients go along the same line on the last journey, it is very hard to find someone who would want to talk and share the true experience of living with liver cancer…someone who would talk with a sincere attitude toward death. What I am looking for is someone who can support me telling that my life isn’t a total failure. I do believe... my life is unique, precious, and unrepeatable. (Keun)

As much as I can, I would like to enjoy every moment that I have now. I don’t have many valuable things that I desperately need to protect or hang onto until death. I am going to leave this world very soon and I know that I won’t be able to carry anything with me… when the time comes. I was almost dead when I was first diagnosed with liver cancer. But, I’ve survived until now. I am not a feeble victim but a strong survivor. I would like to be remembered as a person who wanted to leave his meaningful footprints for others to follow. (Hee)

My 78 years of life in this world may not be as successful as other wealthy guys, but I made it. I have been running a marathon this far without giving up. Even though I am dying of cancer, I am certain that no cancer… no deadly obstacles, would diminish or extinguish the light in my soul. Each of us has an irreplaceable place in this world. I believe that life has meaning under all circumstances. My life is truly unique. Of that, I am certain. (Lim)

Reflecting on my own life, so many emotions crossed my mind. After I am gone, my friends or neighbors will think… there was a man… one of the important men who tried to fight liver cancer… the man who wasn’t good enough to become a wonderful husband… who tried to keep his kids in his heart until the last moment. I would like to be remembered like that every year on my birthday after I’m gone. (Jong)

When I came into this world, I believe that God gave me a compass to help me navigate. So many times, I tried to find my path and solution from somewhere out there. I have forgotten that I should look deeper into my heart and I should look back on the trail where I have lived. Occasionally, I had gone off the trail and experienced setbacks and failure. But the important thing was… is… I have never given up my life under life-threatening crises. I believe that should count for something. (Taek)

My life in this world is not always a good example for my kids. As a husband and as a man, for my entire life, there was nothing to present proudly except the fact that I am a father of three, no actually four, angels. That means a lot to me. My kids have filled my life with so much meaning. (Myung)

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I don’t think… that my cancer-fighting journey was useless. I hate to be considered as a loser. I would rather like to be called a brave survivor. During my cancer treatments, many people died of unknown causes or sudden heart attack or car accident. No one, including my doctor, told me that I could survive more than two years. There must be a very important meaning for letting me have a substantial amount of time to survive. For my entire life, I have been working very hard to give my kids a better future. That’s not going to change as long as I live... even after I am gone. (Noh)

For 70 years of living in this world and two years of living with liver cancer, one thing I have learned is that my life isn’t total chaos. (Park)

What we do and how we live and what we experience are all necessary for the greater good. I may not be able to see the better world in my time. But, I believe that my kids and my grandkids will see the better world. I also believe that my current experience regarding liver cancer treatments and research based on what I am going through will help many people and save their lives in the future. Even though I am gone, the good thing is… at least… I leave a tiny little trail for someone’s sake. (Seon)

The death and dying process that I have been going through… it is painful… it may not be the most honorable way to go. But, no one must take the meaning lightly. At least, I deserve to get some respect for the fact that I have lived bravely and also now I am facing my death courageously. (Kyu)

Transcendence (n=13)

I would like to help people who are struggling with the same hesitation about receiving liver cancer treatments. I have been experiencing all kinds of things since the moment when I was diagnosed with liver cancer. Now I can tell people how they can make their lives and journey less complicated. Of course, now I can give very useful advice to the doctors and nurses who are treating patients... how they can make their explanation without using big words. (Hoh)

I will die alone because I came into this world alone. That’s life. I am not complaining about that. I remember some nice people… and my family that I met during my cancer treatments… during my life living in this world. When my time comes, I will have to get going, having only received their generosity and grace without having time to say goodbye. I am thinking… why have I spent so much energy to criticize others rather than accepting the differences? (Choi)

I think it’s too early to lose all hope. I have found some hope by growing flowers or herbs. No one can take away the hope from me. I am growing small orchids in my room. Seeing blossoming orchids is a very rare occasion. I will use it… use it as my goal during my cancer fighting process. I am thinking… what makes the orchids so precious is the plant itself, not the pot. I may not be able to maintain the same body shape or look that I have now but I will be the same person. What is more important is what’s in my heart not what’s in my appearance. I believe so. (Mah)

I would like to set a good example for my kids. I hope my kids will love every minute of their lives. I hope my kids will enjoy every minute of their stay in this world. May they always use my failure as their mirrors so that they won’t make the same mistakes that I did! I’ll be glad when it’s all over. (Tark)

During several sessions of the hospice program over 4 years, at the end of the program, I had an experience of lying down in a pine wood coffin. As soon as I laid myself down, my wife closed the lid of the coffin and she made a nailing sound with a hammer. I knew that she didn’t actually nail the lid down and I knew she just pretended to nail the lid and I also knew there were many breathing holes for me on the lid. But it was a chilling experience…a very shocking thing as a first-timer. At first, I was too scared to watch the lid which was slowly closing. I closed my eyes for the entire rehearsal. It took only 2 minutes but I felt it was like 2 hours. I have been attending this hospice program almost 4 years now. Over the years of participation in the program, I think that emotionally I got immune to the near-death experience…which means that I am not afraid of lying down in the

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coffin any more. I found, actually, the fresh smell of pine wood was quite comforting. Now, I am strangely able to focus on my present life and my past as if I am looking in the mirror. I think I am the one who should be giving the seminar to other patients. I would like to help many other terminal cancer patients by sharing my experience of living with cancer. (Kyung)

What I can to do to help other cancer patients... is to give them hope by sharing my experience about the fact that they can survive longer than they think or what doctors think. Embracing death naturally day by day presently in my world and looking forward to being in a world after death... that’s what I am doing every day now. (Young)

As I had great help from other patients who so kindly shared their dying process, I believe that I am ready to help other patients. The Divine Creator lives for all eternity, but all humans are mortal beings and must die. The Buddha was a great master but he was also mortal like each of us. I am no great person so I do not expect a much better life than Buddha’s. I am ready to help others rather than cry over spilled milk. I know it may not meet my needs any more…others may not be able to exchange useful information or others may not be able to give me help any longer. The expensive lesson that I engraved in my bones would be beneficial information for other cancer patients. So I don’t mind helping them at all. I have been scared of this silent killer… liver cancer. I was becoming more and more paranoid. I had almost given up my hope like that. Yes, I was obsessed with the fear of death. One day, I met a lady who was also diagnosed with liver cancer. The lady who was waiting for her bone scan test gave me advice and shared her cancer treatment experience. She helped me in a more applicable way by sharing the real cancer-fighting stories. Yes, with her help, I was finally able to come to my senses and become less and less panicked about the cancer journey. My wife wanted to give something to her but there was nothing to give. So my wife wanted to find out her address…at least to send some thank you card or a small gift. But, the lady rejected the offer and she left after saying: ‘pay it back to the world.’ That’s why I want to become a volunteer for other canter patients. (Jang)

I was the oldest son born in my family. I always had to set a good example for my siblings. I have been living my life like that so far. Yes, this time I am also going first before my other siblings. I hope my experience living with cancer will help my family find out the most important meaning of life. I am glad I had to go through this painful experience rather than my younger siblings or my kids. Just once…only once, I wish I just could follow someone else’s footprints instead of being a pioneer. But, I am not afraid of being a pioneer. (Keun)

I strongly believe that there will be some better and even more wonderful things coming later after this world. I will prepare the very best spoon and chopsticks for the upcoming good event after my death. I hope my background story could make people ponder about life and death. May they take a good hint from the set of silver utensils! (Jin)

I try to keep writing in my journal for my kids… how my symptoms first got started … how I have lived with liver cancer… why we all should remember the word of permanent promise from God. I may not be able to finish the journal but, at least, it keeps my hands busy which is a good distraction for me to forget my pain. I am not a doctor but I do believe that my journal could help other cancer patients and family members… for them to get a more realistic picture of the cancer treatment. (Gil)

I have tried to find what the meaning of life is… living in this world. My footprints are not quite a good example to follow. But, one thing that I can surely tell my kids is that they can use my wrong footprints as an example which they should not follow. I hope my kids don’t make the same silly mistakes I have made. (Taek)

At this point, after three years of receiving liver cancer treatments, now all I can do is waiting. Living with liver cancer and facing the death could be a powerful trigger point to reflect and examine my life. Many people that I met in the hospice program didn’t like to hear what I shared about living and dying with liver cancer. What kind of positive trigger is that? I would like to put more value on the fact that I am bravely facing death rather than emphasizing the ugly face of liver cancer. (Seon)

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One of my fondest memories is the time when I went out for a walk with my wife to a nearby lake. It was late fall and about dinner time. The air was not too chilly for a walk. My wife and I sat on a picnic table watching the sunset. And we said our evening prayer together. I saw the nimbus clouds over the lake which made me think a lot of things. Even after the sunset, the after-sunset-glow stayed on the horizon for a long while. I think… if my last sun-setting journey is as peaceful as the sunset that evening, I think I could take it. (Hong)

Life Lessons (n=12)

I believe… life is one big stage with so many signs and lines... the big stage where we are only allowed to play once without rehearsal. It took me a lifetime to realize this... the simple truth. (Choi)

I have learned a lot about myself since I was diagnosed with liver cancer. If I feel different from the way it used to be, my body actually is experiencing some changes. My body needs some relaxation, I can feel it. I must have ignored so many warning signals from my body. If I feel tired, the solution is not drinking coffee… what I need to do is listen to my body and take rest until I feel peppy again. If I am feeling constantly exhausted after I rest, there must be something really wrong. I must be very careful about that. I was so ignorant about that. I should remind my family of that. I hope they don’t make the same unwise mistakes that I made. (Yeon)

I ignored my wife’s saying this as one of her million kinds of naggings. Since the cancer diagnosis, for the last couple of years… seemed like things settled down and I adjusted myself well to a different lifestyle. I have learned a lot how to accept the unavoidable reality without going crazy. This should be a very expensive lesson for me. I hope my kids can learn from my trial and error. (Whan)

I think... liver cancer like other kinds of human suffering… could be a great turning point where we can think about ourselves and the meaning of life. In the place where I have lost everything, I have the opportunity to rebuild a more honest and true self. With all cancer treatments, I actually have the opportunity to grow up… I mean spiritually… and to transform my perspectives about life and death. (Mah)

I try not to give my kids false hope. I am going to die in the near future. But I also try not to scare them off. I know it’s probably too scary to accept the reality. But if we think we are weak, even a small mound can seem like a big mountain. But if we’re strong, then even a heavy storm just seems like a breeze. May they always remember this! (Tark)

One of the expensive lessons that I have learned through this crisis is that every patient has a different outcome. Certainly, the strength of our mind may be a great tool to tolerate this deadly illness. A strong mental attitude can be greater than a weak body. I thought…liver cancer was going to happen to someone who did something wrong or bad. I thought for sure…liver cancer?...not to me…not to me. Another thing that I have learned during my cancer treatment is that we shouldn’t look down upon others because we consider ourselves worthy or we’ve become great… which means we shouldn’t underestimate others because they have a hideous kind of disease. (Jang)

It wasn’t easy for me to accept the reality. I was always pretty good at preparing things ahead of time and I was gladly taking heavy responsibility. Yes, I am a forward thinker. But now I barely manage to take care of myself. I see something messy in the kitchen and the front yard… things that someone should have taken care of a long time ago. I feel that I am not doing anything. It’s my nature to get messy things done. I am learning a lot now how to let it go when I am looking at a messy kitchen or yard. (Ae)

Often I thought about fireflies… the fireflies that made a vividly bright glow within their bodies at night and turned up dead the next morning. I was wondering how my life was different from those fireflies. Had I ever made a vivid glow during my 65 years of living in this world? I thought... and

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thought... about my life and current cancer treatments until dawn. I am learning a very painful but valuable lesson. (Hoon)

Honestly, I didn’t quite pay attention to others or help others out. I thought… suffering from an incurable illness had nothing to do with my life. When my friends or neighbors had difficult times carrying heavy parts of their lives, what I did was, what I did was just make small donations. I never truly thought of their pain or suffering until now. Has my candle of life ever been a good lighthouse for other people? I am beginning to wonder about that. (Jin)

I am learning a lot during my cancer treatment. Yes, I am learning very expensive lessons now. I can’t buy my life with money… that’s the most expensive lesson that I’ve learned. I have lived a pretty good life… always full of energy and challenges. I wasn’t always on the easy path but I managed it well and found my path without problems. (Kang)

I didn’t express my love enough so I never got a chance to say the word before it was too late… that’s the most regrettable thing in my heart. From now on, I am trying to be a more talkative dad who is expressing his feelings more honestly to his kids. If it wasn’t for the liver cancer, I would never change my personality. In my kids’ eyes, I was always a serious figure who showed tough love. There are other kinds of love to become a good father. I know that the lessons I’m learning by going through this process are priceless. (Myung)

I am not a hugger… I mean that I am not a father who is hugging his kids often. Since I have very limited time left on my hands, I am thinking... I would like to try to give him a hug… why not? I have never known this feeling until I am over the edge of a brick wall... I mean… until I am being pushed over the edge by being diagnosed with liver cancer. (Hong)

Connectedness to God (n=11)

I can only reveal my deep secrets to God when I am at prayer; this is because... I finally can find the sense of strong connectedness and the sense of balance between solitude and annoying crowdedness. When I am alone in my prayer doing some reflection with inspirational music... I see myself more clearly and I see the situation that I am dealing with more clearly. Otherwise, I would be completed paranoid and scared about the future and the end times. After some quiet time of self-examination, I feel much better…often I feel relieved, confident, and reassured about the afterlife. And I feel a sense of friendship between God and myself. (Tae)

Well… even after attempting suicide… I’m still alive because my life seems to be very tenacious. I believe that God gave my life back again. There must be a special reason that I didn’t end my life in such a dreadful way. I think that I bought some time to think… think about life and about myself like… who I was… where I came from… where I was going. I believe that God is trying to give me an important message… the message that God loves me and cares about me so much... more than anyone else can. If I must see one of my body parts amputated because of cancer, and if I must die with a disfigured body, I don’t think that God would mind opening the door of heaven for me. (Mah)

Although I don’t like this cramped hospital bed and hospital food, I feel more comfortable here than in the church. They have a Mass every day in the hospital chapel. They told me that I was allowed to use the hospital chapel for 24 hours which made me feel so close to God. Between the cancer treatments, whenever I have some free time here, I can go to church without upsetting other people. During my sleep, for hours and hours, I had some moments of clarity. Next morning when I woke up in the hospital room, I saw the most sparkling sunrise that I had ever seen. Surely, the sun is gone during the night as if it is dead…as if it has vanished forever. But, every morning…without fail… the sun comes alive. I know God will keep watching over me no matter how dangerous the path is… although on that path my tangled state of mind can’t be of any help to figure out the right direction. (Young)

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Very often, I was wondering…I would like to know how come I was the one who survived among other liver cancer patients. Why should it be me? Yes, I asked the same question when I was first diagnosed with liver cancer. I have seen many people who received the same liver cancer treatments that I had but most of them died. There must be a good reason for that. I still don’t know the answer. I believe that God’s hands are guiding me. I believe that there will be a light at the end of this dark tunnel. (Keun)

Coming into this world and being born into a poor family and… and… being attacked by a landlord’s family multiple times… being dragged out of my house by my mother… being threatened with a kitchen knife by my father… being diagnosed with liver cancer… none of these tragedies would kill my soul… I believe. God is my ultimate comforter through His word when the world is crumbling all around me. I do believe so. (Hee)

When I am in prayer, that would be the most honest moment and the only truly honest moment. In my prayer, I can pour out my heart and my thoughts to God without saying big words. I am sure that God doesn’t need big words and long prayers. (Hoon)

Tomorrow, I am going back home and I will come to the hospital one month later for a checkup. I don’t think that I can survive more than five years. What I know for sure is… I don’t think that this will be my last visit to the hospital. I have been searching and reading a lot of books about death and dying. I feel that I am on a very complicated mission given by God. (Jin)

Because of the liver cancer, I finally quit smoking and drinking. Without having any health problem like liver cancer in my life, I could never find the meaning of my life. My life could have ended up in a dead end by drinking and by ignoring God’s will. God gave me a choice to decide how to live and how to act but I didn’t realize how long I had been wasting my precious time in pursuing a false signboard on the path. Because of the cancer treatments that have required unlimited patience and painstaking efforts, I have returned to God. (Gil)

As far as the relationship between God and me, I want to be honest and truthful to God. I believe… that’s the only way that I get closer to God. That’s the most decent shortcut to meet God. I have never felt so close to God’s hand… God’s caring hand until I was diagnosed with liver cancer. (Taek)

Whenever I feel down, I go to see my friend who has been my best friend from my childhood. In spite of his very busy schedule, whenever I call him, he has never turned me down. He is the only friend with whom I can talk about everything. He is the only friend to whom I can spill out my feelings without filtering them. I am a Buddhist and he is a Catholic priest. You know, drinking beers and sometimes playing cards with my friend… and thinking about my life… I have never been closer to the Divine Creator or God… whatever you call Him. (Seon)

Because of the cancer, I started to attend church. I was desperately looking for someone who could understand my distress. We are going to church every Sunday. God called us to church through the life crises that we had to go through. (Hong)

Love (n=9)

I am still working with a full-time government job. I have about six years left until my honorable retirement. I am not so sure if I can survive until the time I receive my pension. That would help my wife raise five kids until they enter college. I would like to do anything for them before I die. I wouldn’t like to put this heavy yoke of financial burden on my wife’s shoulders. She has been a full- time homemaker raising five kids… but she never had a job. It would be awfully difficult for her to find a job or work outside. At least, I would like to ease her burden before I die. (Whan)

I didn’t choose this way so that my wife could live alone and I could die before her. One day my wife heard about liver transplantation and she would like to give a piece of her liver to me. I was furious at

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her suggestion. I don’t want to make any small scar on her body. Besides, I am dying of liver cancer. Do I dare put my wife’s life at risk? Still, she keeps insisting. I would gladly take bad Karma and what my wife and kids would have to face in their future thorn field. How can I repay my wife’s kindness? She has such a kind heart. I wouldn’t like to make her cry again for any reason. My wife has been suffering enough. Needles and a lot of medicines made my arms hurt. I feel that I become a dart board. Whenever they switched needle site, my wife massaged my painful arm with a steam towel. I thought…for anything that she would have to suffer in her future, I would like to take the heat for her by becoming a shield. (Choo)

The moment I knew that my illness was not curable… I had my kids and wife got tested. Fortunately, my kids and wife were OK. I felt relieved… it could have been worse… my kids could have been exposed to the same risk. The kids are still young and they deserve to enjoy every single day for the rest of their lives. My wife is still young. She is very gentle. I should say… she is too young and pretty to remain a widow for the rest of her life. I don’t expect that at all. I feel terribly sorry for her. The truth is… if she had other options, I would gladly let her go. I didn’t mean to drag her into my painful life. She deserves better than this. If another opportunity presents itself, I would suggest that she take it. I don’t mind living alone for the rest of my life… for five or six months at most. Letting her go if she wants would be the most decent thing that I could ever do for her. (Yang)

During my cancer treatment for the last two years, my wife sometimes accompanied me when I absolutely needed her. Most of the time, for my routine cancer treatments, I insisted that she should stay at home looking after the kids instead of coming to the hospital. For a couple of major procedures of my cancer treatment, there was a time she had to stay with me during the entire procedure. Even though I told my doctor that I could take care of myself, my wife came to the hospital procedure room and stayed overnight. Next morning, before she left, I reminded her multiple times that she should wash her hands thoroughly so that my kids wouldn’t get any germs transferred from the hospital. I’ve never brought my kids to my hospital room because of all the kinds of germs the hospital might contain. (Kang)

I am very much concerned about my wife’s back pain and teeth problems. After four times of child birth and raising the kids, my wife’ teeth are not in a sturdy condition to chew steak or any kind of tough food. My wife is much younger than I but the condition of her teeth is worse than mine. Before I die, I would like to solve her teeth problem which is more important than my illness. (Myung)

My husband and I haven’t discussed it yet. But, now would be a good time to talk about the burial plot… and my funeral. My parents are still alive. I know that parents will bury deep in their hearts the memory of the child who left sooner than the parents, considering the child as a sinner who makes them cry. On the other hand, the child who lost a parent would look up the trail and seek the place where the good memory was buried. That’s why I want to pick one of the places on our family mountain. Whenever my kids have some good or sad news, my kids will need a place to cry even if I am gone. When a person dies before one’s parents’ death, usually a cremation is recommended. But, I would like to refuse to have cremation for my kids’ sake so that they could find some solace from me. I would like to let my kids know that I will be always with them in love. Whatever bad thing runs in my blood or in my unlucky fate, I am gladly taking all of the bad Karma with me to the grave, hoping that my kids’ future will be better off. If I can do anything for my kids and my husband, I don’t mind taking all the bad luck with me to protect my kids from all evil things. (Noh)

I have been a good provider for my family. Even though I am dying, I would like to continue doing what I can do for my family until my last day. One thing that I am concerned about is my kids… what if my kids inherited the same weak liver from me? I don’t want to pass on anything harmful for my kids’ future. I would do anything to protect my kids, even die. I’m trying to do everything I can for them until my last moment. (Seon)

I know that I am not an easy man to live with. When my wife came back to me again, I should have prevented her from staying with me using whatever means I could. I made my wife’s life very difficult. If I would meet her again next time in a different world, I would never ask her to marry me.

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My wife is a nice woman. She deserves better than this. And she has every right to live happily ever after until her last moment in this world. Leaving my life insurance benefit to my wife... this could be the last thing that I can do for her before I die. As a husband, I am glad that I still have something to give her. (Joong)

I should have told my baby girl from the beginning that she shouldn’t postpone her wedding date because of me. But, it’s better late than never. She recently rescheduled her wedding date. And I arranged a formal dinner to meet her future parents-in-law. I was barely able to finish the big meeting. I am glad that I arranged the dinner meeting before it was too late. I mean before I become too sick and weak. I never had a higher education. I don’t understand foreign languages or difficult words. As a mother, one thing that I am hoping is… my being with my kids could be a steppingstone for them… so that they could across the freezing river without plunging into it with bare feet. I could die for my kids. If anything bad happens to my baby girl, I would never be able to rest in peace. I pray every day to the Divine Creator: please take me away instead… take me, and protect my daughter’s future and her home that she has been dreaming of since she was a little girl. If I die tomorrow like this… without untangling the bad luck shadowing my family, I will be ashamed as a mother. I asked a Buddhist priest to offer some special prayer to remove the bad luck dangling above my family. Motherly love means embracing my kids… even if I get killed myself by the bad Karma… liver cancer. (Kyu)

Appreciation of Someone (n=8)

Now, I am looking back at my life; I was truly lucky to meet my wife. I admit that I sometimes… I had a moment when I lost my temper. But my wife is always a very wise woman who never showed her irrational temper. Yes, even though she is a lot younger than I, we are a good fit. I think my life is blessed because my wife will be with me until my last breath. (Choo)

My wife never complained about cleaning up the huge mess that I made in the bathroom… helping me to change my clothes because of vomiting and some accidents at night. She made my life less miserable even though she had to turn against most of her family members to be with me. My wife has been very supportive and helpful to go through all the tedious cancer treatments. I am truly deeply grateful to my dear wife. (Dong)

Between continuous vomiting and diarrhea, I almost passed out in the bathroom. When I opened my eyes, my wife was there with nurses. Yes, my wife must have gone to call for some help and came back to me again. I think… even though I may have to say goodbye tomorrow to my wife… the fact that she came back to find me should be enough for me. That joy is enough for me… enough to take with me to the grave… which is more than I deserve. (Yul)

If it wasn’t for my wife, the relationship between my brothers and me could be a lot worse than I could imagine. The first priority in my wife’s motto is: family comes first and the closeness of the family is the most important value. I appreciate my wife’s help to reconcile the relationship between my brothers and me. My wife cooked a lot of healthy snacks and meals and brought those boxes to the hospital room for my brothers who were diagnosed with liver cancer a lot earlier than I. For my wife’s devotion, I deeply appreciate that which makes me feel relieved which means that I don’t have to carry my unfinished responsibility to the next world. Before I met my wife, I had been living a wild and reckless life. For a long time, I had no stable job for more than one year. I didn’t have a purpose or direction in my life as if I had no future. I used to get drunk to survive in the stressful work environment. Many times, I blamed the society and the fact that my life was not just as good as others who had a higher education and who had very supportive parents. However, my life was changed in a positive way… and in a better and more stable way because of my wife’s devotions. I can’t thank her enough. When my brothers were diagnosed with incurable liver disease, I only spoke of my concerns in words. I was a typical overachiever whose first priority was my work. But, my wife was different. I’ve learned things that I couldn’t have learned without my wife. (Sung)

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I am not a good talker. I am not a good listener either that the same is for my wife. That’s why my wife and I never solved the problem in a more agreeable way. I am so sorry about the fact… the home she provided for me never recognized her devotion and efforts as a true sacrifice to hold all family members together. I would like to thank her for all those years… for being with me here in this world. (Jong)

We lost our youngest child in a car accident about fifteen years ago. All those years, in spite of my reckless behaviors, my wife has been with me and sincerely looked after me. My wife is much younger and smaller than I but she is a very strong woman. I couldn’t say a single complaining word even if I had ten mouths to use. If it wasn’t for my wife’s selfless devotion, I couldn’t have protected my career and family. I’m so grateful for my wife! (Myung)

My husband is barely over fifty. From his 40s through early 50s, he never had a chance to go on a vacation. I mean a real vacation… taking time off and having a relaxing time. Most of his vacations he used up looking after the kids and me. Deeply, deeply, I do appreciate his help. And I do appreciate him being a good husband and good friend for me. (Noh)

For the last two and half years of my liver cancer treatments, my wife has been looking after me all the time. I have told her to go home to get some sleep at night. But, she never leaves me alone in the hospital. How can I show my appreciation to my wife? Until I leave this world, I would do anything for my wife. I have been a good provider for my family but I have never been a good husband. I have never been a good listener for my wife. If it wasn’t for my wife during the long-term cancer treatments, I could never make it. I made some choices that I am not quite proud of. Ever since we got back together… my wife has been the only person who has trusted me with her life even when I was wrongly accused of embezzling company money. (Joong)

Faith in God (n=7)

My husband’s death happened very suddenly. One day he said he was tired and couldn’t taste food... and then the next morning I found him dead... lying there right next to me. He looked like he was sleeping... as if falling into a deep... deep sleep. Reflecting on the last image of my husband on his death bed is actually helpful for me to find God’s grace and mercy. A cranky old man such as he was… could be allowed to face death gently… without pain. Wouldn’t my last moment be coming to me more gently and softly without pressure? I do believe that. (Hoh)

When I was a young girl, I committed… I did something very, very wrong. We were very poor and I wasn’t ready to have a baby and neither was my husband. What can I say when I face God? However, I have heard that there are no such things…… things like unforgivable sins. I do believe so. (Sook)

Until my last moment, I hope I won’t have cancer in some other parts of my body so that, at least, I could donate some of my organs. I am not obsessed with preserving my body intact. I have faith in God who will restore me perfectly and raise me from the dead, although it’s very difficult to explain my last wish to my wife and kids. (Keun)

I know my wife and my son don’t want to talk about this… but we have to discuss this matter now… about the burial plot. I want to be cremated when I die… instead of buried under the dark and suffocating earth six feet below. But my wife doesn’t like the idea of cremation. My wife is still thinking of cremation as a cruel, destructive, and disrespectful of the deceased. I don’t mind about cremation because I know God will be with me wherever I go…no matter what shape I’m in. Although I don’t know much about a biblical way of saving life, I strongly believe… there must be some kind of way out of here… here in the middle of frustrating chaos. In my case, I mean, in this incurable case like liver cancer, God will be the only professional repairman who is capable of solving my problems. Only God can help me, no one else. During my journey with my incurable disease, I had several occasions when I took a side road but I always returned to God. That’s one

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thing to which I would like to attach a significant meaning in my life. Yes, I have never lost my faith in God. (Hoon)

Thankfully, God gives sleep equally to everyone so that we can shut down our tired bodies and overheated minds. Yes, sleep shuts down everything peacefully. I am not questioning God’s will. I am not trying to ignore my reality of dying here but I do also believe that God works in mysterious ways. I believe that every moment of my life has meaning. God has given me a twice-longer time than I asked for. So I dare not make another request for myself. Even though I don’t get a full picture of my next journey, I pray that I can follow my Lord’s command, holding even a small piece of His cross. (Gil)

I can only presume that there is a Higher Being who has almighty power… and who will make me free from this fear and anxiety. (Jeong)

I have a strong faith in God. I believe that there are no unforgivable things in God’s merciful heart. I am getting weaker… so even though I may not be strong enough to hold the Lord’s hand on my last day, I am sure that the Lord will send a guardian angel to help me find my path to heaven where my wife is waiting for my arrival. Unlike many other untimely deaths, as least God gave me five years’ early notice for me to get ready and tidy up my mess. About the serious mistakes that I made, I never want to go back there again. I think… at this point… I don’t have to hide my true feelings from God. If I feel anxious or afraid of something, I will say my prayers exactly the way I feel, truthfully. I don’t have to fake my feelings to God. I will place everything in God’s hands… including my fear, bitterness, loneliness, the pain in my heart, and everything. I believe there is no right or wrong way to say my prayers to God… like how deep the prayer should be or how decent the words I use… things like that. I am not afraid of other people’s judgmental attitude anymore. In our culture, I used to be afraid of what other people think about me… about my social image. No matter how big or long the tape measure other people have to judge my past conduct and my current illness… I do not care about that anymore. I believe… that no one can invade and destroy my soul except God. No matter how ugly the disease I have suffered from, I don’t think God would mind holding my hand and hugging me. I have strong faith in God. (Taek)

Appreciation of God (n=5)

In between the cancer treatments, when I still have some strength, I am going to clean up my room and my bank account. The thing that has kept me alive this long could be Buddha’s will so that I can empty my hands and mind. I am truly thankful for that. (Tark)

God always understands me…my talents as my talents…my will as my will…understanding me as a man with human errors…and as a human being. God always understands me for who I am….no matter what I am…God only sees me for who I am. So…I am so grateful to God for always showing His love. No matter what I go through, God is always there... holding, encouraging me. (Young)

What is the most meaningful thing in my life? Ever since I was diagnosed with liver cancer, I blamed God a lot for the fact that God was not fast enough to protect me from cancer. But if I had to say one meaningful thing about my life, that would be that the Christian faith has kept me alive and made me survive over two years without going completely insane. At least, I have one common thing… one significantly meaningful thing my wife and I could share and cherish until death… even after death in heaven. That would be the Christian faith. For that, I am thankful to God. (Dong)

There are millions of people who experience sudden death either in bed or on the street due to a car accident. At least, in my case, I know that I am dying because of what I was already told. For that, I do appreciate God’s thoughtful arrangement. (Jeong)

I think… God gave me a second chance to make my life better so that I can return to honest and good Christian faith. Because of the liver cancer, I quit drinking. Because of the liver cancer, I quit seeing

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another woman that I had been involved with for a long time. Even though I am on the path to death, God must have granted me another chance to save my soul. (Myung)

Dignity (n=5)

I don’t want to let my wife or my kids know that I am getting weaker. I was always a decision maker in my family. I have been showing myself as a strong and trustworthy father figure for them. So I really appreciate this... someone who isn’t close to us to talk to. I don’t want to my family to see me crying or weak... or with a quivering voice. I don’t really want to complain or express my burden to people I know. I would like to be remembered as a good father and a good husband after I am gone. (Tae)

The most difficult thing I have ever experienced is hearing that my illness is one of the most incurable types of cancer. I am not ready to wave the white flag to surrender yet. I am dying but not dead yet. People should understand that I am a human being who is living with dignity rather than just a cancer patient. The liver cancer is making me frail but I am no failure in life. (Whan)

My mother-in-law told me… because of my difficult fate… that I always have had some difficult trouble to fight. I am not saying that I was born with lots of luck or golden opportunity but I refuse to believe that my life is meant to be suffering. That is an extremely insensitive and thoughtless thing to say. My life was... still is important. What I have been going through regarding my cancer treatments could also be a choice that I made as part of my life to live and to die with. I believe that I have a right to live my life in dignity until death. I have every right to be happy and to feel worthy. (Ae)

I am not scared of the dying process but I am really, really scared of ugly changes in my looks. If I were becoming more comatose and if my appearance changed so dreadfully, I wouldn’t like to allow my kids to see me like that on my deathbed. The last image that my kids see would remain for the rest of their lives. I don’t want my kids to remember me with a monster-like look with a lot of needle puncture marks on my arms. If this is going to be my last day, I honestly want to die with my dignity. (Dong)

I’m not going to spend every single moment of the present to worry or be concerned about the unknown future. I am not going to give my permission for any major surgery or ventilator or CPR. I do not wish to depend on a machine. I don’t want to worthlessly prolong my life when my time’s over. If the blood tests or scanning come back with hopeless results a couple of more times, I think that should be a good time to think of… dropping everything and leaving many things behind. Since my stomach already got into nasty troubles, I don’t think my time will last long. I would like to sleep in my room… the sleep that I would never wake up from… rather than in the hospital bed. I would like to fall asleep… my last sleep… on my wife’s lap rather than on a hospital pillow. (Yang)

Prayers for Someone (n=5)

I have been praying for my daughter… for her to live happy and healthy. When I see my Lord face to face, I would like to ask Him to grant His blessing to my daughter. May God pass the good deeds that I have practiced on earth to my daughter’s future path laid out in front of my daughter! I will put my trust in God’s loving hands. (Mah)

When my time comes… the last moment that I have to leave, I pray… I pray… may the Lord be a good shield and comfortable shelter for my son even though the whole world is covered with water. (Sun)

I am going to leave this world very soon. One thing I would like to put in God’s loving hands is the petition. My only prayer of petition is for my kids and my wife. May God Himself be a strong fence and a solid rock that they may be protected from severe hardships in this world until we meet again in the Lord! May God strengthen me so that I can keep moving forward to Him! (Gil) 282

I don’t think God would grant me miraculous healing. I only pray to God that I can avoid passing on my bad liver to my kids. That should be enough for me. (Park)

Since my liver cancer diagnosis, my son has blamed himself a lot. I told my son not to torture himself like that. In my prayer, I have been asking one thing. May God grant my son to find in Christ some good meaning through this difficult time! (Hong)

Reincarnation (n=5)

How can anyone’s last day be completely wonderful without any regret? My wish… my last wish is hoping that I won’t be reborn as a hideous animal in my next life. That’s what I am afraid of. I wouldn’t mind coming into this world as an inanimate object like a stone or water or cloud. I am sure those objects won’t be feeling pain or sorrow. (Tark)

I had given up the blue sky because most of my time when I was young... I had been working in the coal mine. So I asked my wife... the day I die... to scatter the cremated ashes over the clouds. I would like to be reborn as a gentle breeze so that I could see the blue sky all the time. I don’t want to be buried and perish in a dark and choking place… a place like where I used to work for my whole my life. If I were born again, I would marry my wife and would make her life a lot easier and more comfortable. If that’s not going to happen, I want to become rain so I can flow here and there and travel all over the earth. My wife and I must have been soul mates in our previous lives. If I were born as a human again, I could serve my wife as the queen. She and I must have been closely bound together… the ties that bind her and me. We were no doubt predestined to become a couple. In the suffocating place where I worked, I would’ve run away hundreds of times if it wasn’t for her. I would’ve given up my life because of desolate, lonely feelings if it wasn’t for her. (Choo)

For my next life after death, I would like to become a welcome rain so that I could help relieve the drought and help the crops grow. I am strongly feeling that my spirit won’t have perished in vain. I hope to meet my late parents in paradise. If the current cancer treatment works ok, then I buy some more time to prepare for my last journey. If the cancer treatment does not work, I don’t think I would mind departing earlier than other people. In my next life, it couldn’t be worse than my current life. (Kyung)

I don’t believe in God but I do believe there will be some place to rest my soul after this life. I would very much like to meet my parents again. I wouldn’t mind coming back to this world again with another form of life or object. If I have an option or choice, I would like to be reborn as a dandelion so that I could settle myself at the gate… so that I could see my kids and my grandkids coming and going to school… so that I could fly away as pollen and come back every spring. (Jo)

In loving memory of their father, I wonder if my kids would pursue the dream that I cherished in my heart for so many years. I have always wanted to become a teacher in a small mountain village. I wanted to build a nice log cabin for my writing place just like my grandparents’ cozy cottage. I have been saving some money for building a log cabin house in my hometown. I thought I would be more dedicated in building the cottage house and writing books when I had some free time after my retirement. I hope that one of my kids will understand my dream and make it real in the future even after I’m gone. I may not be alive to see the completion of building the dream house, but I feel that my spirit will come back to the place again to see my dream house... just like a gentle spring breeze. (Yul)

Hope (n=4)

Patients are receiving the same cancer treatment, chemotherapy, radiation therapy, and other procedures. I have heard that many of them died already or a few of them made it, showing good progress. I can feel something special in me. It seems like people have their own patterns of healing. (Yeon) 283

I believe… if it wasn’t for God’s intention, I wouldn’t be here. Until I was diagnosed with liver cancer, I didn’t realize the meaning of my life given by God. Trying to find the meaning of my life until my last day living in this world... that is my mission. By not abandoning a beacon of hope, I really want to keep the promise I made to God during my cancer treatments. Although my life was born to be sad, my experience living with cancer will be beneficial to the person who reads my story. (Sook)

Over the tedious time of cancer treatments, I have never surrendered all hope of being recovered because it had happened before. I had been there before…even a worse situation I had experienced before through the crisis in my business. Living with liver cancer may not be comparable to the economic crisis but I know how I should manage the crisis. I should just continue my fighting when everyone else has already quit. (Seong)

After the long and painful journey in this world, when this is over... when I open my eyes in another world after death, I hope to wake up in the most beautiful forest where there is a bright rainbow, a feeling of peace and the song of birds that ushers in the dawn. (Myung)

Forgiveness (n=4)

Deep in my heart, I am still thinking of my first fiancée and I miss her so much. Yes…my first fiancée was my best friend who shared my childhood memories. During the engagement period, she made a serious… unforgivable mistake while I was too busy with my work. We were young and inexperienced at dealing with complicated situations. I put my farewell letter in a big envelope and sent it to her. Next morning I left to forget the painful memory. I still see my former fiancée in my dreams. What should I say when I meet her again? I thought of that over a thousand times. But, it was useless. I couldn’t say or think of anything when she finally visited the hospital to ask about my health. I don’t even remember what I said. I felt hurt deep down but I’ve never hated her. Life could be too short to delay something important…like forgiveness: because one who has tied a knot must untie it before one dies. (Keun)

My husband is a good man who has faith in God. Yesterday when I returned from the procedure room, I felt a little bit chilly and had a cold sweat and he got me some blankets and tucked me in. I was very tired and wanted to take a nap. I was half-awake, half-asleep and I heard my husband talking to my mother-in-law to not bother my sleep and he also asked his mother to leave the room. If I am recalling correctly, my mother-in-law apologized to me for her annoying behaviors. And I nodded and I fell asleep. There is no such thing as an unforgivable person. (Ae)

I had some problems with inappropriate relationships involving women. My wife doesn’t know about this. Eventually, I cleared up all the entangled relationships. I am not saying that I am proud of what I have done in my past. But, I believe there are no saints without a past and there are no sinners without a future. I believe that church is not a museum of saints but a shelter for sinners or people in need. (Seon)

About what had happened between my son and me, I will ask my son to forgive me for the fact that I heartlessly gave up on him because he got into all kinds of trouble. I didn’t give him one more chance to clean up his mess. I just want to let him know that I have never hated him. We all make some mistakes at some point in our lives. I hope it’s not too late to amend out relationship. (Hong)

Positive Karma (n=3)

I hope my good deeds become a strong, positive Karma for my kids’ future. I have seen many times that a father’s sinful behavior backfired on family members. If that fact were true, I could jump in front of my kids to take the dreadful boomerang. This may be the last thing, at least, that I can do for my sons as a father. I would like to… I am willing to become a shield for them. (Kap)

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My wife is still trying to persuade me to have a liver transplantation. But I say ‘no’. My wife has done everything that she could do for me. What husband would want to drag his beloved wife to death? She must live a long happy and healthy life after I am gone. I must have done something really, really good in my previous life to deserve her. My life isn’t always full of luck but she filled my life with great happiness. We never had enough money but we were happy to just be together. (Choo)

This afternoon I went out for a walk. Outside was a little bit chilly but the sunshine was quite cheerful. I saw a tiny plant at a sunny place in the hospital garden between melting snow. That made me think a lot of things about life and death and reincarnation. Even if I don’t remember how I have lived in my previous life, I must have done some significantly good things for other people, considering the fact I was born as a human being. (Jo)

Recollecting Good Memories (n=3)

When I seriously considered ending the long misery, I stumbled across one thing. I never prepared even one simple meal for my wife. I was doing some research in cookbooks and I made a lot of noise in the kitchen and the saucepan was burning and the smoke detector went off. Yes, finally my wife had to come to the kitchen to fix the mess that I made and she smiled and we got back together. I vividly remember that day. We used to joke about it… our getting together again could be… because of the smoke detector and my messy cooking. It makes me smile too. I have no regret that I stayed in our marriage. (Jong)

My wife and I used to go to a small weekend farm. Since my wife’s sudden death, I have been going to the family farm with my kids. The weekend family farm has so many good memories on it. My wife used to cook with the ingredients from our weekend farm: freshly picked cabbages, cucumbers, carrots, onions, and hot peppers. I miss the taste of the foods that my wife cooked after a long day of working on the farm. The food freshly cooked was really delicious even though it wasn’t a luxurious, full course meal but simple cooked rice, bean paste soup, water Kimchi, and several side dishes. The freshly cooked food on the farm had a mild herb fragrance and the natural flavor of bamboo shoots. (Taek)

I like going to the mountains and climbing. I love the fresh fragrance of the rain in the forest. I love the fragrance of bamboo trees and pine trees. I love taking a nap in the middle of the forest and lying down there and looking at the blue sky between the tall, densely-standing trees until I fall asleep. My eyes and ears never get tired of watching dancing trees and listening to the rustling sound of the leaves made by the wind. It’s soothing. That is one of the most beautiful recollections of memories in my life. Last week before I came to the hospital, I went up to the rooftop to get some fresh air. My youngest son and I used to come up there often. Whenever I am on the rooftop, it reminds me of all the good memories that I had with my youngest son. After having a nice Parents’ Day dinner, my older sons gave us a small coin purse they had made. Suddenly, my youngest son asked me to go to the bathroom. He asked me to sit on the toilet seat cover. I was wondering what was going to happen. I was sitting on the toilet seat and he washed my feet with his tiny hands. My baby boy remembered what I said every night: I was too tired to untie my shoes and wash my feet. Washing my feet very gently… it was the gift that my baby boy thoughtfully prepared for me. How many 5-year-old-boys do you know who could prepare such a thoughtful gift? That was the nicest gift that I have ever received in my entire life. (Myung)

Relief (n=3)

For me, dying of liver cancer would be more merciful than spending endless time in this world in an abusive environment. When I heard that I was diagnosed with liver cancer, first time… like other people… I felt so shocked but later, when I came to my senses, I felt relieved. Yes, I felt relieved about the fact that my miserable life would end soon. (Hee)

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Since my wife had gone home to pick up some clothes that night, I didn’t have to pretend to be a strong man. Crying actually helped me feel relieved. I must say, the nurse who passed me a box of tissues to hold in my hands was much better than the meeting with my pastor. (Hoon)

My doctor said that my family didn’t have other complicated health problems. As least, my family members don’t have that problem and that is a huge relief. Finally, I feel that… I am turning a corner. (Kang)

Suggestions for Care Team (n=1)

I wish the hospital had some other kind of programs for cancer patients and their families rather than the hospice program. I like going to the hospice program but I don’t always like every session that they provide. Especially when it comes to a religious perspective… such as sin or forgiveness, God, heaven and other places, I don’t know what to think… which makes me more confused. Still… I am not convinced why we need to learn about Christianity or God in order to prepare death. (Jo)

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Appendix I

Non-repeating Rhythmicities through Interactions of the Patterns

between Human and Environmental Fields

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Environmental Field

Human Field

Depressive symptoms-related Patterns

Spirituality-related Patterns

QOL-related Patterns

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Appendix J

Redrawing the Life Perspective Rhythm Model

289

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