The Quality of Dying and Death in Advanced Cancer from the Perspective of Bereaved Caregivers

Sarah Anne Hales

A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Institute of Medical Science University of Toronto

Sarah Anne Hales

Doctor of Philosophy

Institute of Medical Science University of Toronto

2015 Abstract

There were two main research goals of this project: 1) to increase the interpretability of quality of dying and death measures by exploring how respondents generate their evaluations; and 2) to measure the quality of dying and death in advanced cancer patients and consider the influence of specialized palliative care and place of death on this outcome.

To understand how respondents evaluate dying and death, 22 caregivers of deceased cancer patients were asked to take part in a cognitive interview protocol after formulating the 31 quality ratings that contribute to the total Quality of Dying and Death (QODD) questionnaire score.

Qualitative content analysis was applied to transcribed interviews. Results suggested that evaluations were based on multiple different perspectives and standards of comparison. Findings highlighted that the family should be the targeted unit of end-of-life care and attention should be paid to helping families anticipate and prepare for the realities of the dying process.

To measure the quality of dying and death of patients with cancer and examine its relationship to receipt of palliative care and place of death, 402 caregivers of deceased cancer patients were interviewed with the QODD. Overall quality of dying and death was rated in the “neither good nor bad” to “almost perfect” range by 99.8% of caregivers. The lowest QODD subscale scores ii assessed symptom control and transcendence over death-related concerns. Multivariate analyses revealed that late or no specialized palliative care was associated with poorer death preparation and that home deaths were associated with better symptom control, death preparation, and overall quality of dying and death. Findings suggested that while home death was best, institutional deaths could also be of good quality, and also highlighted that symptom control and death-related distress are areas most in need of clinical attention.

Overall, this research contributes to our understanding of the quality of dying and death construct, how it is evaluated, and the significant although small influence of location and palliative care on this outcome. Future directions include examination of quality of dying and death in other settings and the development of interventions that specifically target death-related distress.

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Acknowledgments

This research was financially supported by a Canadian Institutes of Health Research Operating Grant #74684 (G. Rodin, PI) and a National Cancer Institute of Canada Post-MD Fellowship (S. Hales). This research was also financially supported in part by the Princess Margaret Cancer Foundation Hertz Centre Fund, the Campbell Family Cancer Research Institute and Ontario Cancer Institute at The Princess Margaret Cancer Centre, and by the Ontario Ministry of Health and Long-Term Care. The views expressed do not necessarily reflect those of the OMOHLTC.

I would like to acknowledge the many research staff essential in helping with the planning, organization, coordination, recruitment, and data collection involved in this project: Carolyn Brown, Aubrey Chiu, Leanne Ferreira, Judy Jung, Tania Panday, Lianne Trachtenberg, Andrew Walsh. Thank you to Ceilidh Eaton Russell and Christopher Obwanga for assistance with data collection at the Temmy Latner Centre for Palliative Care. Special thanks to Aubrey Chiu for her leadership in the coordination of the many arms of this study. And special thanks as well to Anne Rydall for her encouragement, advice, constancy, integrity and commitment to coordinating the work of our research team.

I would like to thank the members of my Program Advisory Committee, Dr. Gerald Devins, Dr. Lucia Gagliese, Dr. Aaron Schimmer, and Dr. Camilla Zimmermann for their patience, time and constructive critiques at important junctures of this project.

I would like to thank the caregivers who were willing to revisit an emotional and often painful time of their lives in the hope that their stories could help improve the care of future dying patients and their families.

I would like to thank my family, including my mother Anne Hales, my sister Elizabeth Hales, my partner Scot McFadyen, and my son Caleb, for their unconditional love and support.

And finally, the most important acknowledgement must go to my supervisor, Dr. Gary Rodin, for his wisdom, humour, tenacity, optimism, and unfailing belief in me. For anything of value that comes of this research or my future career, I owe him an unpayable debt of gratitude.

List of Abbreviations

PM (Princess Margaret Cancer Centre)

QODD (The Quality of Dying and Death questionnaire)

UHN (University Health Network)

Table of Contents

Chapter 1: Introduction……………………………………………………………. 1

Chapter 2: Aims and Hypotheses…………………………………………………. 3

Chapter 3: The Quality of Dying and Death Construct……………………………. 4

Chapter 4: Measurement of the Quality of Dying and Death……………… …….. 20

Chapter 5: Understanding Evaluations of the Quality of Dying and Death………. 63

Chapter 6: The Quality of Dying and Death in Cancer…………………………… 83

Chapter 7: General Discussion……………………………………………………. 107

Chapter 8: Conclusions…………………………………………………………… 115

Chapter 9: Future Directions……………………………………………………… 116

References…………………………………………………………………………. 118

List of Tables

Table 1. Studies defining quality of dying and death.

Table 2. Published and validated instruments measuring quality of dying and death.

Table 3. Ad hoc instruments measuring quality of dying and death.

Table 4. Sample characteristics and QODD scores (n=22).

Table 5. Content analysis coding scheme.

Table 6. Sample characteristics and their relationship to total quality of dying and death (n=402).

Table 7. Sample characteristics by length of specialized palliative care involvement and place of death (n=402).

Table 8. Multivariate regression parameters for final models predicting quality of dying and death total and subscale scores.

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List of Figures

Figure 1. Flow diagram of search strategy.

Figure 2. QODD subscale and total QODD score frequencies.

Figure 3. QODD subscales and total QODD scores by place of death.

Figure 4. Total QODD scores by palliative care received and place of death.

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Chapter 1 Introduction

Over the last several decades, within the both social sciences and medicine, increasing attention has been paid to the end-of-life experience (Ellershaw, Dewar & Murphy, 2010). Advances in medical treatment are extending human life and allowing people to live longer with progressive disease and heightened awareness of their mortality. Medicine has broadened its focus from disease alone to the illness experience and from quantity of life to quality of life and quality of care. The rise of the person-centred and consumer models of health care have emphasized patient autonomy, practitioner accountability, and generated heated debates on topics such as physician-assisted suicide and euthanasia (Lewis, 2006; Vogel, 2011). These cultural shifts have given rise to more interest in the nature of the “good death”, its determinants, and interventions that have the potential to improve the dying experience.

Research and innovation in end-of-life care have been focused predominantly on the cancer population (Delamothe et al., 2010). Given the often slow and predictable progression of solid tumour cancers, health care providers, patients and families may be able to anticipate end-of-life and initiate advance care planning. Unfortunately, many assume that death from cancer is inevitably one of pain, suffering and loss of dignity. Research has shown that it is the anticipatory fear of the dying process rather than death itself that is most terrifying (Steinhauser et al., 2000), that distress about dying and death may be common in patients with advanced disease (Lo et al., 2011), and that negative expectancies (more than actual symptoms) are associated with requests for physician-assisted suicide and/or euthanasia (Hendry et al., 2012). How death from cancer is, in the end, experienced and evaluated by those involved in the process, however, has received little research attention.

Lack of clarity regarding the nature of the quality of dying and death construct and how to measure it has complicated research in this area. The criteria by which the quality of death is judged, and the values and attitudes underlying such judgments, have not always been made explicit (Hart et al., 1998), and numerous measurement approaches have been used. The

preliminary literature review for this thesis project therefore focused on exploration of definitions of the “good death”, to clarify and delineate this construct, and also compared and evaluated the quality of dying and death measurement tools that have been developed.

The first research goal of this project was to increase the interpretability of one of the most used and validated measures, the Quality of Dying and Death (QODD) questionnaire (Curtis et al., 2002), by examining, via a cognitive interview protocol, how bereaved caregivers generate their evaluations. The second research goal was to measure the quality of dying and death of cancer patients, and consider how the nature of end-of-life care, specifically specialized palliative care received and location of death, could impact this outcome. This thesis project was therefore intended to fill gaps within the burgeoning investigative field of end-of-life care and ultimately to inform future inquiry and approaches to clinical care of the dying and their families.

Chapter 2 Aims and Hypotheses

The research aims of this thesis project were to:

1) Examine how quality of dying and death is understood and evaluated by bereaved caregiver respondents;

2) Evaluate the quality of dying and death in advanced cancer patients from the perspective of bereaved caregivers and determine the influence of specialized palliative care and place of death on this outcome.

With respect to the latter aim, specific hypotheses were outlined prior to investigation and the rationales behind these are explained in Chapter 6. In summary, it was hypothesized that worse quality of dying and death would be associated with:

1) Death in hospital;

2) Receipt of less specialized palliative care.

Chapter 3 Literature Review – The Quality of Dying and Death Construct

A version of this was previously published as:

Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med 2008; 168: 1-7.

All were involved in the conceptualization and design of the paper. Dr. Hales completed the literature review and initial draft. Drs. Zimmermann and Rodin were involved in revising it critically for important intellectual content. All approved of the final version.

3.1 ABSTRACT

During the past decade, research has examined definitions and conceptualizations of quality of dying and death in different populations. At the same time there has been a call to clarify the distinctions between quality of dying and death and other end of life constructs. The purposes of this article are to: 1) review research that examined definitions and conceptualizations of the quality of dying and death; 2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life; and 3) outline challenges that remain for clinicians, researchers and policy makers. Review of the literature revealed that the quality of dying and death construct is multidimensional, with seven broad domains: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health care, life closure and death preparation, and the circumstances of death. The quality of dying and death is subjectively determined with numerous factors that influence its judgment, including culture, type and stage of disease, and social and professional role in the dying experience. Quality of dying and death is broader in scope than either quality of life at the end of life or quality of care at the end of life although there is overlap among these constructs.

3.2 INTRODUCTION

Interest in the topic of “good” death continues to grow in both the popular press and the health care literature. Reasons for this increased attention include shifting demographics with growth in the aged population, increasing societal openness to discussion of death, and the lengthening trajectory from onset of illness to death in developed countries. The latter has allowed more time for end of life planning and has broadened the scope of health care from a narrow focus on survival and treatment toxic effects to consideration of the quality of life and of the dying experience.

Experts have described the quality of dying and death as an evaluation of the dying experience as a whole according to one’s expectations and values (Stewart et al., 1999) and research during the past decade has examined definitions and conceptualizations of quality of dying and death in a variety of different populations. Although the “end of life experience” may include the quality of care, quality of life, and quality of dying and death, many researchers have not distinguished

among these constructs in their work, thereby complicating comparative evaluations and leading to a call for more specificity in operational research definitions (Ferrell, 2005). The purposes of this article are, therefore, to: 1) review research that examined definitions and conceptualizations of the quality of dying and death; 2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life; and 3) outline challenges that remain for health care professionals, researchers and policy makers who are interested in improving the quality of dying and death for patients and their families.

3.3 DEFINITIONS OF THE QUALITY OF DYING AND DEATH

We reviewed health care research in which the quality of dying and death was defined or conceptualized. Studies were obtained from searches of health literature databases MEDLINE (1950 to September 2007), Healthstar (1966 to September 2007), and CINAHL (1982 to September 2007), using the following keywords: “quality of death,” “quality of dying,” “good death,” and “bad death.” Letters, editorials, historical reports, case reports and reviews were excluded. Abstracts of the remaining articles were examined and those that identified definition or conceptualization of the quality of dying and death to be a main study objective were selected for further review.

In the 17 research articles identified that addressed definitions and conceptualizations of the quality of death (see Table 1), sample populations included: non-ill community members (general public, youth, elderly people, clergy and congregants), patients (with non-terminal and terminal diseases including AIDS, cardiovascular disease and cancer), family members (of living and deceased patients), and health care professionals (nurses, physicians, social workers, nursing assistants, administrators, chaplains, volunteers, and other allied health professionals). Most studies were American or Northern European, with six set in the United States, four in the United Kingdom, two in Israel, and one each in the Netherlands, Australia, China, Japan and South Korea. Recruitment settings included community and health care sites (hospitals, outpatient clinics, hospices, and long term care facilities). Most studies used qualitative methods, relying on observation, individual interviews, focus groups and self-report questionnaires. Three studies used quantitative questionnaires. Overall, this research supports a view of the quality of dying and death construct as multidimensional and subjectively determined.

3.3.1 The Multidimensional Nature of the Quality of Dying and Death

Seven broad domains of the quality of dying and death were drawn from the studies reviewed (see Table 1). These domains were: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health care, life closure and death preparation, and the circumstances of death. There was overlap among the domains. For example, many studies mentioned “suffering”, “symptoms”, “distress” or “comfort” as important without distinguishing among domains of experience (Low and Payne, 1996; Steinhauser et al., 2000; Kristjanson et al., 2001; Hopkinson & Hallett, 2002; Pierson et al., 2002; Vig & Pearlman, 2004; Hirai et al., 2006). This corresponds to the traditional holistic approach of palliative care. However, it is a both a conceptual and measurement question whether distinctions can be made among suffering in the physical, psychological and spiritual or existential domains. Future research may help to delineate domains and to clarify their interrelationships.

3.3.2 The Subjective Nature of the Quality of Dying and Death

Considerable similarities were found among the studies in terms of domains identified as relevant. Not surprisingly, freedom from pain and suffering was the aspect of a good death most commonly identified as important. Several studies, however, emphasized inter-individual differences (Hopkinson & Hallett, 2002; Pierson et al., 2002; Vig & Pearlman, 2004). For instance, variability was found with regard to reported patient preferences about death preparation (e.g. death expected or not) (Hopkinson & Hallett, 2002; Vig & Pearlman, 2004) and circumstances of death (e.g. at home versus in hospital death, or dying asleep versus dying while awake) (Pierson et al., 2002; Vig & Pearlman, 2004). Opinions about dying and death are likely shaped in complex ways by individual, social and contextual factors. Some potential influences on the evaluation of the quality of dying and death are outlined below.

3.3.2.1 The influence of culture:

Three studies set outside North America and the United Kingdom commented on cultural influences, particularly the extent to which individualism is valued, as an explanation for their findings. Reitjens et al. (2006) suggested that the acceptance of euthanasia in their Dutch sample was in keeping with cultural values of control, maintenance of independence and self- determination. In contrast, Hirai et al. (2006) interpreted their Japanese respondents’ relative lack

of focus on personal decision-making and autonomy, compared with that found in Western studies, to reflect the Japanese pattern of entrusting (‘omakase’) decisions to others. Finally, Leichtentritt and Rettig (2000) suggested that young Israeli adults’ contradictory views about death were influenced by opposing ideologies of “autonomy” and “communitarianism,” which are both prominent in that society. Cultural norms regarding dying and death may be greatly affected by religious and existential beliefs, the degree of secularization, the understood relationship of the individual to the community, and resource availability. Although these findings indicate that the cultural context may be important in the evaluation of dying and death, this was not considered explicitly in many of the reviewed studies.

3.3.2.2 The influence of type and stage of disease:

Although the reviewed studies included patient respondents with a variety of diseases, an apparent concordance was found among them regarding the conceptualization of a good death. None of the reviewed studies, however, specifically compared or contrasted attitudes of patients with different diagnoses.

Beliefs and preferences about dying and death may change or become more nuanced and complex with disease progression. In his study of hospice patients, Masson (2002) observed the development of “flexible realism,” referring to the growing appreciation over time of the trade- offs that may be required to achieve a good death. As they face the complex realities of progressive disease, hospice patients may become less certain about the nature of the ideal death and may display complicated, contradictory, or rapidly shifting attitudes to dying and death. The changing attitudes and wishes of dying patients create challenges for families and health care professionals who must be open to and prepared for an ongoing process of communication about end of life planning.

3.3.2.3 The influence of social and professional roles:

Steinhauser et al. (2000) considered the influence of social and professional roles of respondents on their views of the quality of dying and death and found that these roles were more influential than sex or ethnic background. Family members tended to speak from the perspective of patient advocates and care recipients; social workers were especially attuned to the needs of the family; chaplains focused on ethics and the tension between individual and community rights; and

physicians were more narrowly medical in their evaluation. Several other studies that examined the perspectives of health care professionals found a similar focus among this group on the process of health care and symptom treatment (Low & Payne, 1996; Payne et al., 1996; Hanson et al., 2002). Because family and health care providers have increasing influence on decisions as death draws nearer, recognizing and understanding their perspectives may help to ensure that their views do not unduly override patient wishes.

3.4 DISTINGUISHING AMONG THE END OF LIFE CONSTRUCTS: QUALITY OF LIFE, QUALITY OF CARE, AND QUALITY OF DYING AND DEATH

The three main end of life constructs discussed in the clinical and research literature are quality of life, quality of care, and quality of dying and death. These are focused on the subjective evaluation of the experience of life, care, and dying, respectively. Many researchers have not distinguished among these constructs in their work, thereby limiting the possibility of comparative evaluations.

The present review reveals the breadth of the quality of dying and death construct and suggests it includes elements outside the realm of the other two quality constructs. Quality of life at the end of life includes the domains of physical, psychological, social and spiritual or existential experience (Kaasa & Loge, 2003). Quality of dying and death incorporates these domains and also includes the nature of health care, life closure and death preparation, and the circumstances of death. Quality of care at the end of life incorporates all of the domains of the end of life experience (Ferrell, 2005) but is specifically focused on the extent to which health care structures and processes affect these outcomes. The three end of life quality constructs can be viewed, therefore, as overlapping and yet distinct.

The relevance and specificity of the end of life constructs may be affected by the timing of their assessment in relation to death. The quality of dying and death pertains to the period immediately preceding death, although it is often not possible to identify precisely when the transition to the dying phase occurs (Stewart et al., 1999). As death draws nearer, individual end of life domains-- particularly the experience of health care, life closure and death preparation, and circumstances

of death--may become more salient. In addition, as the independence of the dying patient wanes, family perspectives on end of life domains become increasingly relevant.

3.5 REMAINING CHALLENGES

For researchers, health care professionals and policy makers interested in the improvement of the end of life experience, the multidimensional and subjective nature of the quality of dying and death creates several challenges. First, although the more abstract domains of social experience, spiritual or existential experience and life closure and death preparation are of great importance at the end of life, consensus is lacking regarding these constructs, their distinction, and the best measures to evaluate them. Until we measure these constructs consistently and understand the clinical relevance of measure scores, health care provision is in danger of remaining focused narrowly on symptoms.

Second, good death is subjectively determined, and therefore attempts to ascertain the objective “truth” of the end of life experience may be futile. We must instead acknowledge and accept the subjectivity inherent in all accounts, whether provided by patients, family or health care professionals, and determine how to make use of these multiple perspectives. More research is needed to understand factors that influence end of life preferences and experiences including sociodemographic factors, individual psychology, religious and cultural background, and social and health care context.

Third, emphasis on good death could lead to ways of dying being normalized or pathologized. Both commonality and diversity of opinion were identified in the reviewed studies which justifies caution regarding the assumption that there is a singular good death. Because a good death may be an unachievable or euphemistic goal, several authors have suggested terms such as “good enough,” “appropriate” or “least undesirable” death (Masson, 2002; Leichtentritt, 2004). A focus on an acceptable if not ideal death may have the advantage of being a less prescriptive, less value-laden, and more realistic framework for end of life care.

3.6 CONCLUSIONS

The quality of dying and death is a construction that is multidimensional and subjectively- determined. Further research is required to understand better its more abstract domains and the

numerous potential influences that color its perception. We can aspire to a good death, but an acceptable death may be a more realistic goal. The importance and finality of death for all involved make further understanding of this sensitive and complex area of human experience both necessary and potentially greatly valuable.

Table 1. Studies defining quality of dying and death.

Author Setting Population Objective Methodology Results Quality of Dying and Death Domains Identified *

Low & Payne U.K.; hospice 50 hospice nurses and To investigate Self-report 3 main factors related to All 7 domains (1996) social workers palliative care questionnaires perception of a good death: professionals’ lack of patient distress, perception of a patient control and staff’s good and bad supporting role death 4 main factors related to perception of a bad death: negative effect of death on the family, patient’s non- acceptance of death, not dealing with patients’ fears, and the age of the dying person

Payne, Langley- U.K.; inpatient 18 hospice cancer To compare Semi-structured Patient descriptions of a Physical Evans & Hillier hospice inpatients and 20 concepts of a interviews good death: dying in one’s experience, social (1996) hospice health care good death used sleep, dying quietly, dying experience, professionals by patients and suddenly, dying with spiritual/existenti staff in a dignity, and being pain al experience, and palliative care free; staff descriptions of a circumstances of unit good death included: death

adequate symptom control, family involvement, peacefulness, and lack of distress

Leichtentritt & Israel; 26 elderly people To reach an Open-ended Good death based on 5 All 7 domains Rettig (2000) community inductive interviews essential essences understanding of (physiological, personal, the meanings interpersonal, social and attributed by cultural domains of life); elderly people in good death incorporated Israel to the good past, present and future death time periods and was underlined by the fundamental wish to establish community

Steinhauser et al. U.S.; hospitals 75 participants To gather Focus group 6 major components of a All 7 domains (2000a) and hospice (physicians, nurses, descriptions of discussions and in- good death: pain and social workers, components of a depth interviews symptom management, chaplains, hospice good death from clear-decision making, volunteers, patients, patients, families, preparation for death, and recently bereaved providers completion, contributing to family members) others, and affirmation of the whole person

Braun & Zir U.S.; Christian 121 clergy and To explore the Focus groups Definitions of a good Physical (2001) churches congregants affiliated meaning of a death: pain managed, no experience, social with Christian good death and inappropriate prolongation experience, churches potential roles for of dying, family is present spiritual/existenti faith communities and supportive, conflicts al experience, are resolved, and spiritual nature of health or existential issues are care, and life addressed closure and death preparation

Kristjanson et al. Australia; 20 palliative care To describe Semi-structured Nurses’ judgments about Physical (2001) inpatient nurses palliative care interviews the quality of death experience, palliative care nurses’ determined by patient- psychological unit perceptions of a related factors described as experience, social good and bad whole vs. fragmented, experience, nature death family-related factors of health care, life described as connected vs. closure and death unraveled, team-related preparation, and factors described as smooth circumstances of vs. off-balance, illness- death specific factors described as in control vs. impossible, and attributes of the death scene described as release vs. chaos

Mak (2001) China; inpatient 33 hospice in-patients To gain an Semi-structured Awareness of dying the Life closure and hospice with terminal cancer understanding of interviews foremost essential element death preparation what it means to of a good death die a good death from the perspective of Chinese patients

Hanson, U.S.; long-term 77 nursing assistants, To define a good Focus groups 3 themes: highly Nature of health Henderson & care facilities nurses and physicians death in a nursing individualized care based care Menon (2002) home on continuity relationships with caregivers; effective teamwork by staff, physicians and family; and comprehensive advance care planning

Hopkinson & U.K.; acute care 28 nurses To explore Open-ended Shared understanding of a All 7 domains Hallett (2002) hospitals nurses’ interviews good death included time understandings of with patient, peace, a good death comfort, dignity, expectation and having someone present; also found individual understandings of a good death shaped by personal experience and religious beliefs which changed over

time

Masson (2002) U.K.; inpatient 10 hospice cancer To explore non- Open-ended 3 frames of reference All 7 domains and outpatient patients and 10 professional interviews within which participants hospice service relatives of deceased perceptions of a understood death and hospice cancer good death dying: an acknowledgment patients of tension and paradox; contextualization within the life lived; and an attitude of flexible realism

Pierson, Curtis U.S.; academic 35 patients with To identify and Open-ended 12 domains mentioned by Physical & Patrick (2002) clinics, advanced AIDS describe domains interviews at least 2 participants: experience, community that define a good symptoms, quality of life, psychological clinics, and versus bad death people present, dying experience, community process, location, sense of spiritual/existenti agencies resolution, patient control al experience, of treatment, issues of nature of health spirituality, death scene, care, life closure physician-assisted suicide, and death aspects of medical care, preparation, and acceptance of death circumstances of death

Kim & Lee Korea; acute- 185 nurses To assess Self-report Elements of a good death: Physical (2003) care hospitals elements questionnaires comfort, not being a experience, social considered burden to family, good experience, important for relationship with family, spiritual/existenti

good and bad readiness for dying, and al experience, life deaths by Korean belief in perpetuity closure and death nurses preparation, and Elements of a bad death: a circumstances of persistent vegetative state, death sudden death, pain and agony, dying alone, and being a burden to family

Tong et al. U.S.; 95 participants To identify Focus groups 10 domains of quality of All 7 domains (2003) community common domains death (physical comfort, that characterize a burdens on family, location good death and to and environment, presence describe of others, concerns differences regarding prolongation of between minority life, communication, (Black, Buddhist completion and emotional or Muslim) and health, spiritual care, non-minority cultural concerns, and (European and/or individualization); minority Judeo-Christian of participants emphasized background) that within health care they individuals faced lack of access to spiritual care, lack of facilitation of cultural traditions around end of life, and stereotyping based on race or ethnicity

Leichtentritt Israel; 14 young adults To study the Participant essays 4 themes associated with All 7domains (2004) community meanings that and semi-structured least undesirable death: the young people interviews time, manner, and place of attribute to a good death, and importance of death death being beneficial to others

Vig & Pearlman U.S.; academic 26 men with terminal To learn how Semistructured Common descriptors of a All 7 domains (2004) medical centres heart disease or terminally ill men interviews good death: in sleep, quick, cancer conceptualize painless, without suffering, good and bad at peace with God, deaths peaceful, and without knowledge of impending death

Common descriptors of a bad death: painful, prolonged, dependent, suffering, burdening others, drowning or shortness of breath, and not right with God

Hirai et al. Japan; regional 63 participants To identify Semi-structured 17 attributes of a good All 7 domains (2006) cancer including advanced components of a interviews death: freedom from pain institutes, both cancer patients, Japanese good or symptoms, good family acute and family members, death relationship, dying in palliative care physicians, nurses favorite place/environment, settings good relationship with

medical staff, not being a burden to others, maintaining dignity, completion of life, maintaining sense of control, fighting against cancer, maintaining hope, not prolonging life, contributing to others, control of future, not being aware of death, appreciating others, maintaining pride, and having faith

Rietjens et al. Netherlands; 1388 members of the To gain insight Self-report Characteristics important Physical (2006) community general public into questionnaires for a good death: experience, social characteristics of possibility to say goodbye experience, nature a good death for to loved ones, dying with of health care, the Dutch general dignity, being able to and life closure population decide about end of life and death care, and dying free of pain preparation

*Seven broad quality of dying and death domains were identified by us from review of the selected studies: physical experience, psychological experience, social experience, spiritual/existential experience, nature of health care, life closure and death preparation, circumstances of death

Chapter 4 Literature Review – The Measurement of Quality of Dying and Death

A version of this was previously published as:

Hales S, Zimmermann C, Rodin G. The quality of dying and death: a systematic review of measures. Palliat Med 2010 . 24(2):127-44.

All were involved in the conceptualization and design of the paper. Dr. Hales completed the literature review and initial draft. Drs. Zimmermann and Rodin were involved reviewing the literature search and selection process and revising the manuscript draft critically for important intellectual content. All approved of the final version.

4.1 ABSTRACT

To determine whether modern medicine is facilitating “good” deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950 to 2008), Healthstar (1966 to 2008), and CINAHL (1982 to 2008) were searched using keyword terms “quality of dying/death” and “good/bad death”. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. Evaluation criteria included: description of measure development (validated or ad hoc), definition of quality of dying and death provided, empirical basis for the measure, incorporation of the multiple domains and subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death (QODD) questionnaire is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand factors influencing ratings of the quality of dying and death.

4.2 INTRODUCTION

To what extent has modern medicine helped dying patients achieve a “good” death? Does this depend upon the degree of symptomatic distress, the cause and location of death, the nature of family and other supports, the quality of end of life care, and/or the personal qualities of the patient? These questions are gaining attention now that improvement of the quality of the dying and death experience is recognized as an important goal (Emanuel & Emanuel, 1998; Stewart et al., 1999), and a practical focus of general

medicine (Lorenz et al., 2008). The answers to these questions require a clear understanding of the quality of dying and death construct and the availability of valid and reliable measurement instruments.

The quality of dying and death pertains to the period leading up to death, although there is ambiguity about when the transition to the dying phase occurs (Stewart et al., 1999). There has also been a lack of clarity and consistency in the literature regarding the quality of dying and death construct. Our recent review of research studies in which this construct was conceptualized, indicated that seven broad domains are consistently identified by patients, families and health care providers (Hales et al., 2008). These are: 1) physical, 2) psychological, 3) social, and 4) spiritual and existential experience, 5) the nature of health care, 6) life closure and death preparation, and 7) the circumstances of death. These multiple domains have also been highlighted in expert opinion papers outlining the good death (Emanuel & Emanuel, 1998). Evaluation of the quality of death is by definition subjectively determined, and its judgment is influenced by numerous factors including culture, and type and stage of disease. Patients, family members, other caregivers and health care providers all have unique and valid perspectives on this evaluation.

How is the quality of dying and death, so defined, being measured? Several decades of research have provided information about aspects of the dying and death experience. Large studies in the United Kingdom (Seale & Cartwright, 1994) and the United States (The SUPPORT Principal Investigators, 1995; Lynn et al., 1997) have demonstrated the high prevalence of pain and other symptoms in the last days of life, the frequent use of life-sustaining interventions at the end of life, and the high proportion of deaths that occur in hospital. While these studies provide a picture of what happens at the end of life, they do not tell us to what extent these would be considered “good” deaths by those involved (Steinauser et al., 2002). While qualitative research can provide information about the dying experience for small numbers of patients, quality of dying and death measures are needed to evaluate this outcome in larger samples. To date, no systematic reviews have examined specifically the measurement of quality of dying and death. The

purpose of this paper is therefore to review and critically appraise measures of the quality of dying. This necessarily also includes attention to the definition of the quality of dying and death upon which the measures were based.

4.3 METHODS

The aim of the review is to examine the quality of currently available quality of dying and death measures. We systematically searched published health care research to identify studies that reported on the primary development, validation, or utilization of measures of the quality of dying and death. Papers were obtained from searches of MEDLINE (1950 to November 2008), Healthstar (1966 to November 2008), and CINAHL (1982 to November 2008), using the keyword search terms “quality of death”, “quality of dying” “good death”, and “bad death”. Reference lists of selected papers were also examined for potentially relevant citations. Studies were included if they were reported to measure quality of dying and/or death in cases of potential or expected death (i.e. advanced disease, life-threatening disease, residence in a long term care facility, advanced age). The following were excluded: studies using solely qualitative methods, articles not written in the English language, opinion or theory articles, letters, editorials, case reports, historical reports and reviews. The first author (SH) conducted the search and the second and third authors (CZ and GR) reviewed the selection process. Figure 1 shows a flow diagram of the search strategy.

Criteria for this review were based on those developed by the Scientific Advisory Committee of the Medical Outcomes Trust for the purpose of assessing health status and quality of life instruments (Scientific Advisory Committee of the Medical Outcomes Trust, 2002). These criteria included consideration of: the conceptual and measurement model, reliability, validity, responsiveness, interpretability, respondent and administrative burden, alternate forms, and culture and language adaptations. Because the quality of dying and death literature is relatively new, we chose to focus on the conceptual and measurement model, reliability, validity and responsiveness. We supplemented these considerations with a criterion of multidimensionality and of subjectivity, based on our previous literature review (Hales et al., 2008), which revealed seven subjectively

determined domains that have been identified consistently as central to the quality of dying and death construct. In evaluating these measures, we specifically examined whether the measure was: 1) developed formally with reported reliability and validity or ad hoc for the purpose of a specific study; 2) based on an operationalized definition of quality of dying and death that was used as the conceptual foundation; 3) constructed using items generated on an empirical basis (e.g. based on previous research, review of relevant literature, expert opinion); 4) described as capturing the multiple dimensions and the subjective nature of the quality of dying and death experience; 5) responsive to change.

4.4 RESULTS

Our literature search initially identified 1155 papers, of which 103 were identified as suitable for further review. Of these, 31 papers published from 1988-2008, describing 18 different measures met the inclusion criteria of aiming to measure the quality of dying and death (see Tables 1 and 2). Eleven of the measures were tested on populations in the United States, one in Taiwan, one in Japan, one in Italy, one in the U.K., two in Australia, and one in both the U.S and Canada. Measures were used to assess deaths in the following patient populations: patients with cancer, patients in nursing home or long term care facilities, patients receiving dialysis, patients in palliative or hospice facilities, non- sudden deaths including those in the community, hospices or intensive care units, and deaths of older people. Two measures were used in studies with a quasi-experimental pre- post test design to evaluate the effect of an intervention on the quality of dying and death and the remainder only in studies with observational designs.

Six of the 18 measures were published with some reported validity and reliability testing (all since 2002), and none have been used by researchers not affiliated with the measure author(s) (see Table 1). Use of the Quality of Dying and Death questionnaire (QODD) (Curtis et al., 2002) or a modified version was reported in nine studies; the Good-Death Scale (Tsai et al., 2005) was reported in three studies; the Good Death Inventory (GDI) (Miyashita et al., 2008) in two studies; the Quality of Dying in Long-Term Care (QOD- LTC) (Munn et al., 2007) in two studies; and one study adapted both the Client

Generated Index tool (CGI) (Annells et al., 2001) and the McGill Quality of Life questionnaire (MQOL) (Cohen et al., 1995) for use by caregiver proxies after patient death. Of these six published measures, the QODD had the most validity and reliability testing. Twelve of the 18 measures reviewed were developed ad hoc with minimal or no report of the development process, reliability or validity (see Table 2).

Evidence that the measure was derived from a conceptual model was based on a description of the concepts that the measure was intended to assess (Scientific Advisory Committee of the Medical Outcomes Trust, 2002). An explicit definition of the quality of dying and death was provided in the description of only 7 of the 18 measures reviewed. Two were based on a definition in which death occurred in accordance with the patient’s wishes (Curtis et al., 2002; Wallston et al., 1988). Three were based on definitions that referred to a set of predefined criteria, such as dying without symptoms, with support, without heroic interventions (Carr, 2003; Ethunandan et al., 2005), or with reduced suffering, dignity, awareness, acceptance, arrangement of a will and appropriate timing (Tsai et al., 2005). Two quality of life measures were employed in one study that defined quality of dying and death as synonymous with quality of life of the patient in the last two days of life (Bridge et al., 2002). The other 11 measures were described without reference to an explicit definition of quality of dying and death.

The dying and death phase was defined in the majority of measures as focused on the last hours (Peruselli et al., 1999), last days (Bridge et al., 2002; Wallston et al., 1988; Yancey & Greger, 1990; Tsai et al., 2005; Yao et al., 2007; Cheng et al., 2008) or weeks (Curtis et al., 2002; Patrick et al., 2003; Hodde et al., 2004; Mularski et al., 2004; Treece et al., 2004; Mularski et al., 2005; Levy et al., 2005; Glavan et al., 2008; Curtis et al., 2008; Ray et al., 2006; Ganzini et al., 2003) of life. For the QODD (Curtis et al., 2002; Patrick et al., 2003; Hodde et al., 2004; Mularski et al., 2004; Treece et al., 2004; Mularski et al., 2005; Levy et al., 2005; Glavan et al., 2008; Curtis et al., 2008) this phase was defined as the last week of life, or the last month if a patient was unconscious or unresponsive in the last week. One measure used for deaths following dialysis discontinuation, defined the dying phase as the time from last dialysis until death (Cohen et al., 1995; Cohen et al.,

2000)). One measure referenced different time frames, varying from weeks to months, depending on the aspect of dying and death being evaluated (Enthanandan et al., 2005). Three measures generally referred to the “end of life period” (Miyashita et al., 2008a; Miyashita et al., 2008b), “final days” (Carr, 2003) or “near time of death” (Swartz & Perry, 1993) and four measure descriptions did not specify an exact time frame (Munn et al., 2007; Caprio et al., 2008; Cohen et al., 2005; Reynolds et al., 2002; Flacker et al., 2001).

The measure development process was published for 13 of the 18 measures (Curtis et al., 2002; Patrick et al., 2003; Hodde et al., 2004; Mularski et al., 2004; Treece et al., 2004; Mularski et al., 2005; Levy et al., 2005; Glavan et al., 2008; Curtis et al., 2008; Bridge et al., 2002; Cohen et al., 1995; Wallston et al., 1988; Yancey & Greger, 1990; Cohen et al., 2005; Keay et al., 2003; Reynolds et al., 2002; Tsai et al., 2005; Yao et al., 2007; Cheng et al., 2008; Miyashita et al., 2008; Peruselli et al., 1999; Ethanandan et al., 2005; Cohen et al., 2000) but not for the other five (Ray et al., 2006; Carr, 2003; Ganzini et al., 2003; Flacker et al., 2001; Swartz & Perry, 1993). Evidence for validity was published for six of the measures. The Quality of Dying and Death questionnaire (QODD) (Curtis et al., 2002) was based on literature review, qualitative research and review of existing instruments. The Good-Death Scale (Tsai et al., 2005) was based on expert opinion that a good death is one with reduced suffering, dignity, awareness, acceptance, arrangement of the will and appropriate timing. The GDI (Miyashita et al., 2008) was based on qualitative and quantitative research and literature review. The QOD-LTC (Munn et al., 2007) was based on previous research and the Quality of Life at the End of Life (QUAL- E) (Steinhauser et al., 2002) measure items were selected to reflect overall dying, the quality of the long term care setting and administration of the measure to surrogate respondents. Finally, researchers defining the quality of dying and death as synonymous with the quality of life in the patient’s last two days of life adapted the CGI (Annells et al., 2001) and the MQOL (Cohen et al., 1995) for retrospective caregiver proxy report. These two measures were developed based on qualitative research to assess patient quality of life.

Five of 18 measures employed single items, all developed ad hoc, to evaluate quality of dying and death, ostensibly allowing the respondents to decide what to consider in providing their evaluations (Ray et al., 2006; Ganzini et al., 2003; Flacker et al., 2001; Swartz & Perry, 1993). Two of these five measures relied on categorical responses of yes/no (in response to a question regarding whether patient had a good death) (Reynolds et al., 2002) or unsatisfactory/satisfactory/good death (Swartz & Perry, 1993). Three of the five measures relied on single-item scales with ranges from worst possible to best possible death (Ray et al., 2006), very bad to very good death (Ganzini et al., 2003), or terrible/uncomfortable to peaceful death (Flacker et al., 2001).

Thirteen of the 18 measures assessed multiple aspects of the quality of dying and death, although there was variability in the comprehensiveness of that assessment. The QODD, Good-Death Scale, GDI, and 3 of the ad hoc measures (Cohen et a., 1995; Wallston et al., 1988; Yancey & Greger, 1990; Cohen et al., 2005; Cohen et al., 2000) assessed some aspect of all seven quality of dying and death domains previously identified via literature review (Hales et al., 2008). Three ad hoc measures reported on multiple domains, including symptoms, place of death, presence of relatives, medical interventions applied, symptom control, advance directives, and circumstances of death, but did not assess spiritual/existential experience or death preparation (Keay et al., 2003; Peruselli et al., 1999; Ethunandan et al., 2005). The QOD-LTC captured all seven end of life domains except symptoms. The CGI and MQOL, used in one study (Bridge et al., 2002) did not incorporate aspects of health care, life closure and death preparation, or circumstances of death.

None of the 18 measures reviewed evaluated quality of dying and death with patient respondents. All relied upon retrospective reports by non-patient respondents to generate quality of dying and death scores, including health care providers alone (Hodde et al., 2004; Treece et al., 2004; Cohen et al., 1995; Wallston et al., 1988; Ganzini et al., 2003; Reynolds et al., 2002; Flacker et al., 2001; Tsai et al., 2005; Yao et al., 2007; Chen et al., 2008; Peruselli et al., 1999; Cohen et al., 2000), family/friend caregivers alone (Caprio et al., 2008; Curtis et al., 2002; Patrick et al., 2003; Mularski et al., 2004; Mularski et al,

2005; Glavan et al., 2008; Bridge et al., 2002; Yancey & Greger, 1990; Cohen et al., 2005; Carr, 2003; Miyashita et al., 2008; Miyashita et al., 2008), both health care providers and family caregivers (Munn et al., 2007; Levy et al., 2005; Curtis et al., 2008; Ray et al., 2006; Reynolds et al., 2002; Swartz & Perry, 1993), or chart review/administrative data (Keay et al., 2003; Ethunandan, 2005). Of the 6 published and validated measures, the QODD has been used with health care providers, family care providers and a combination of both; the QOD-LTC has been used with family care providers and a combination of family and health care providers; and the GDI and CGI/MQOL only with family care providers. All measures requested a proxy account of the patient’s end of life experience and none purported to evaluate the respondent’s experience of the patient’s dying and death.

Only eight of the eighteen measures attempted to account for individual preferences and perspectives regarding the dying and death experience. Three measures incorporated evaluation and item weighting, specifically the QODD (Curtis et al., 2002; Patrick et al., 2003; Hodde et al., 2004; Mularski et al., 2004; Treece et al., 2004; Mularski et al., 2005; Levy et al., 2005; Glavan et al., 2008; Curtis et al., 2008), and the CGI and MQOL (Bridge et al., 2002). The QODD asked respondents how often or whether an event happened and how they would rate this aspect of the patients’ dying experience, whereas the CGI and MQOL included evaluation of “client-identified” important variables. Five of the ad hoc measures relied on single-item evaluations which theoretically would allow respondents to weight more heavily those aspects of dying and death they considered most important (Ray et al., 2006; Ganzini et la., 2003; Reynolds et al., 2002; Flacker et al., 2001; Swartz & Perry, 1993). The remaining 10 measures described aspects of the dying and death experience (i.e. place of death, symptoms, advance directives, resuscitation, end of life procedures, emergency room visits or intensive care unit admission, social support and relationships, existential/spiritual experience, death awareness/acceptance/preparation) but did not incorporate the relative importance of these aspects of dying and death to the individual patient.

Responsiveness refers to the measure’s sensitivity to change (Scientific Advisory Committee of the Medical Outcomes Trust, 2002). Only two of the 18 measures, the QODD and an ad-hoc measure, were used in studies with a quasi-experimental pre-post test design to evaluate the effect of an intervention on the quality of dying and death (Treece et al., 2004; Curtis et al., 2002; Keay et al., 2003). The QODD was assessed in two quasi-experimental studies: one showed that the QODD, adapted for ICU and nurse respondents, was sensitive to an intervention to improve palliative care in the ICU (Curtis et al., 2002) and one did not detect change when a withdrawal of life support form was introduced in an ICU (Treece et al., 2004). These studies were powered to detect a 10- point difference and a seven-point difference on the QODD, respectively, but both reported that minimal clinically important differences had not been specified. A study relying on an ad-hoc measure of quality of dying and death to evaluate a nursing home physician education intervention reported a positive finding but did not include any discussion of effect sizes or minimally important differences (Keay et al., 2003).

The remaining 12 measures reviewed were employed only in studies with observational designs. One study included a longitudinal assessment and demonstrated improved quality of death scores from the time of admission to just prior to death (Cheng et al., 2008). Twenty of the 31 studies provided a cross-sectional summary score for the quality of dying and death using a single-item or multi-item measure. Nineteen of these, using 11 different measures, reported the mean quality of dying and death to be in the intermediate to good range (Caprio et al., 2008; Curtis et al., 2002; Hodde et al., 2004; Mularski et al., 2004; Treece et al., 2004; Mularski et al., 2005; Levy et al., 2005; Glavan et al., 2008; Curtis et al., 2008; Ray et al., 2006; Flacker et al., 2011; Tsai et al., 2005; Yao et al., 2007; Cheng et al., 2008) or found the majority of sample scores to be in the intermediate to good range (Cohen et al., 1995; Ganzini et al., 2003; Reynolds et al., 2002; Swartz & Perry, 1993; Cohen et al., 2000). Only one of the 20 studies reporting summary quality of death scores did not find intermediate to positive ratings. That was the Bridge et al. study (2002), which used two quality of life measures, the CGI and MQOL, to capture quality of death.

4.5 DISCUSSION

The quality of the dying and death experience has been measured using a variety of approaches with varying levels of rigor. Of the measures identified in this systematic review, more than half were ad hoc with no reported reliability or validity testing, although increasingly rigorous measure development and testing was noted in more recent publications. Less than half of the measures reviewed were based on an explicit definition of quality of dying and death. There was also great variability in how the dying and death phase was defined, ranging from hours to months. This variability in methodological rigor and conceptual clarity limits the comparability of measures and the conclusions that can be drawn from their use.

Five of the reviewed measures were single-item evaluations of the quality of dying and death. Single item measures impose little respondent or administrative burden, but they are not recommended unless the construct or domain being evaluated is well-defined and unambiguous to the respondent (DeVellis, 2003). In view of the complex nature of the quality of dying and death, multi-item measures are likely to yield more meaningful information.

Despite the subjectivity of the quality of dying and death construct (Hales et al., 2008), almost half of the multi-item measures used in the studies reviewed did not allow for evaluation or weighting of items based on patient preferences. There are known individual differences regarding such aspects of death and dying as the desirability of a death at home, a death surrounded by friends and family, or a death with open awareness and preparation (Hopkinson & Hallett, 2002; Pierson et al., 2002; Vig & Pearlman, 2004). While more research is needed to understand the factors that influence end-of-life preferences and experiences (i.e. the nature and stage of the disease, sociodemographic factors, religious and cultural background, individual psychology, and the social and health care context), meaningful quality of dying and death measures must allow for the recognized variability in preferences regarding the end of life experience.

A limitation of currently available quality of dying and death outcome measures is their lack of demonstrated responsiveness to change. Thus far, only the QODD has been used in anything other than cross-sectional and observational research. Of the 20 studies reviewed that provided a summary rating of the quality of dying and death, 19 using 11 different measures reported ratings in the intermediate to positive range. The one study that reported low summary scores used a quality of life measure to evaluate the quality of death, which may account for the discrepant findings (Bridge et al., 2002). The almost uniform intermediate to positive evaluations of quality of dying and death are surprising, given that the fear of dying and death is a major source of distress for patients and families. It is unclear whether these positive ratings accurately reflect the quality of dying and death, or whether they reflect measurement error or a retrospective positive bias of the raters. Quality of life research has demonstrated that proxies tend to experience and rate quality differently than patients (Sprangers & Aaronson, 1992; Addington-Hall & McPherson, 2001).

In several studies, there is the possibility of selection and response bias. In those that reported recruitment data, the proportion of family members approached who consented to these studies ranged from 27% (Curtis et al., 2002) to 57% (Munn et al., 2007). Respondents with positive experiences may have been more likely to agree to participate in such research studies. It is also possible that the rating of quality of dying and death is altered retrospectively due to the need of family or health care providers to perceive the end of life in positive terms. Also, many of the study subjects may have received better attention to symptom care or death preparation than is commonly available. Further research is required with well-developed and validated measures replicating the intermediate to positive evaluations that have been reported to date.

This review indicated that the QODD, used in nine of the 31 studies reviewed, is by far the most widely published and validated multi-item measure available. The authors provided an explicit operational definition of quality of dying and the basis for measure development was broad. The QODD captures the important domains of the quality of dying and death as well as individual end-of-life preferences. Responsiveness to change

has been demonstrated for the QODD in 1 of 2 quasi-experimental studies. At present it is the best summary measure to assess the quality of death from any life-threatening illness thus allowing future comparative research to examine, for instance, the influence of treatment setting and disease type on the dying and death experience.

To increase interpretability of the QODD and other quality of dying and death measures, further research is required to understand influences on the subjective evaluation of quality of dying and death, specifically, how individuals cognitively evaluate quality of dying and death and how patient perspectives may differ from those of non-patients respondents. When a subjective evaluation of dying and death is elicited, it remains unclear how respondents make these judgments. The basis for judgment or the comparator used may significantly alter the evaluation provided, and this may pose a threat to the reliability and validity of measures. For instance, quality ratings based on a comparison to a previously experienced painful or distressed death may be very different from ratings based on comparison to an ideal death experience. In the quality of life literature, the phenomenon of response shift has been explained by changing comparators. Calman (1984) suggested that quality of life is determined by congruence between expectations and experience, with a smaller gap between the two leading to the perception of a better quality of life. Quality of life researchers have used cognitive interviewing to understand better the basis of these evaluations and thus increase the interpretability of quality of life measure scores (McColl et al., 2003). Similar research with quality of dying and death measures may improve interpretability of these measures and enhance our understanding of how dying and death is evaluated.

In quality of life research, the subjective nature of the construct is cited as a reason for reliance on patient reports as the gold standard. In principle, this may also be true of the assessment of quality of dying and death although it may not be feasible to obtain such information directly from patients. Indeed, all of the studies reviewed relied on retrospective evaluations from non-patient respondents. The reliability and validity of this type of report continues to be questioned (Sprangers & Aaronson, 1992; Addington-Hall & McPherson, 2001). Family or health care provider reports may be subject to numerous

influences, including their subjective state at the time of the event and at recall, their own individual experiences, time from event to recall, motivation (Addington-Hall & McPherson, 2001) and ability to take another’s perspective into account. Respondents also may have difficulty rating aspects of experience that are not easily observable, such as spiritual and existential experience, psychological experience, and life closure and death preparation. These factors may influence evaluations and explain the low to moderate inter-rater reliability reported with measures such as the QODD (Mularski et al., 2004; Levy et al., 2005).

Despite these potential limitations, retrospective reports from non-patient informants are methodologically necessary and clinically valuable. Patient participation in end of life research is problematic due to the difficulty of prospectively identifying patients in the dying phase and the challenges inherent in studying a subjective experience in individuals with progressive physical and cognitive impairment (Jordhoy et al., 1999; Addington- Hall, 2002). In order to provide meaningful data regarding the quality of their dying and death, patient subjects must have some awareness of terminality and a willingness to discuss death-related issues. Perhaps most importantly, it is the event of death that ultimately defines the preceding days and weeks as the dying phase. Many aspects of dying and death, particularly the circumstances of death and adequacy of life closure and death preparation, may be best captured retrospectively, when there is distance and perspective on a complex and traumatic set of events.

Family members and health care providers are also a legitimate focus of end-of-life care research in their own right. Depending on the medical care setting, health care providers may spend the most time with patients near death and therefore have the most information about the end-of-life experience. Given their knowledge and experience, they may also be uniquely situated to judge whether a dying or death experience was as good as could have been expected. The perspectives of family members are also of clinical importance given that they are co-recipients of palliative and end of life care are decision- makers when patients are incapable, and bear the burden of grief. Whether and how

family and health care provider perspectives are distinguishable from those of patients remain unknown and an important avenue for further study.

We focused in this review on the conceptual and empirical basis, development, content and nature, and reliability and validity of measures of quality of death and dying. Further research is needed to investigate further the intermediate to positive quality of dying and death evaluations that have been reported consistently to date and to consider the relative value of single-item versus multiple-item and general versus disease-specific measures. It should also be determined whether modifications are needed based on language and cultural context and whether there is benefit from alternate modes of administration. Research is also required to establish clinically meaningful benchmarks, and to identify determinants of quality of dying and death that will guide clinical care and policy development.

The increasing volume and rigor of published research on the quality of dying and death reflects its growing importance in health care. Of the measures developed to date, the QODD is the most widely studied and appears to be the best suited for use as a general summary measure, capturing the important domains of the quality of dying and death as well as the individuality of end of life preferences. The ability to measure the quality of the dying and death experience with such instruments will allow more rigorous and comprehensive evaluation of end of life care that addresses the totality of the dying experience. Just as quality of life measures have transformed radically the development of disease treatments and interventions, so may measures of the quality of dying and death bring important empirical evidence to bear that can shape the evaluation of individual cases, clinical programs and health policy related to end of life care.

Electronic Databases Searched (MEDLINE (1950 to November 2008), Healthstar (1966 to November 2008), and CINAHL (1982 to November 2008) with keyword search terms “quality of death”, “quality of dying” “good death” and/or “bad death”)

1155 papers

Exclusion Criteria Applied (studies using solely qualitative methods, non-English articles, opinion or theory articles, letters, editorials, case reports, historical reports and reviews)

103 papers

Abstracts Reviewed and Inclusion Criteria Applied (reported to measure quality of dying and/or death in cases of potential or expected death (i.e. advanced disease, life-threatening disease, residence in a long term care facility, advanced age)

31 papers

Hand Search of Selected Paper Reference Lists

0 additional papers

Papers Reviewed and Measures Abstracted

18 measures

Figure 1. Flow diagram of search strategy.

Table 2. Published and validated instruments measuring quality of dying and death.

Paper Setting Objective Population Source/ Definition Basis for Measure Reported Quality of Authors and / Type of Respondent of Quality Measure Description Measure Dying and Population Death Used of Dying Development Properties Death Evaluated and Evaluations Death

Good Death Inventory (GDI)

Miyashita Japan; To develop 189 cancer Family Not Based on 18 domains with 3 Face Total GDI et al. regional and test a patient members provided qualitative or more attribute validity scores not (2008a) cancer measure deaths research and questions for each evaluated by reported; mean center for national survey domain rated on 7- 2 value of 18 evaluating in Japan as point scale from 1 physicians, domain scores death from well as (absolutely 2 nurses and ranged from 2.7 the literature disagree) to 7 2 lay to 5.5 perspective review (absolutely agree); persons; of bereaved domain score sufficient family calculated by concurrent members summing attributes; validity total scores demon- calculated 3 ways: a strated by total of all comparison attributes, a total of with the 10 core domain Care attributes Evaluation (environmental Scale comfort, life (Morita et completion, dying al., 2004)

in a favourite place, and overall maintaining hope care and pleasure, satisfaction; independence, sufficient physical and internal psychological consistency comfort, good (Cronbach’s relationship with alpha 0.74- medical staff, not 0.95) and being a burden to acceptable others, good test-retest relationship with reliability family, being (ICC 0.38- respected as an 0.72); factor individual) and a validity total of 8 optional testing domain attributes identified 18 (religious and possible spiritual comfort, domains receiving enough treatment, control over the future, feeling that one’s life is worth living, unawareness of death, pride and beauty, natural death, preparation for death); higher scores indicate achievement of

good death

Miyashita Japan; To explore 165 cancer Family Not As above As above As above Total GDI et al. regional factors patient members provided scores not (2008b) cancer contri- deaths reported; good center buting to a death associated good death with death in from the palliative care perspective unit, patient and of bereaved family family member’s age, members appropriate opioid medication; barrier to good death included life prolongation and aggressive treatment in last 2 weeks of life

Quality of Dying in Long Term Care (QOD-LTC)

Munn et U.S.; To describe 633 Family and Not Items partially 11 item QOD-LTC; Cronbach’s All items al. (2007) nursing the QOD- nursing health care provided drawn from 23-item QOD-LTC- alpha for positively homes and LTC and home or staff Quality of Life C; respondents rate QOD-LT skewed; item residential QOD-LTC- residential at the End of statements using 5- 0.66 and means ranged care/ C, care/ Life (QUAL- point scale from 1 QOD-LTC- from 2.92 to assisted measures assisted E) measure (not at all) to 5 C 0.85; 4.84; total and

living evaluating living which was (completely) factor factor scores facilities quality of deaths based on focus describing aspects analysis not reported dying in groups and of the quality of revealed long-term national survey dying including QOD-LTC care for all identifying personhood, consists of 3 decedents attributes of a closure, preparatory domains (QOD- good death; tasks, sense of (person- LTC), and items purpose, closure, hood, the for examined for social connection; closure, cognitively content factor scores preparatory intact validity and (means of item tasks); the decedents chosen to scores within each QOD-LTC- (QOD- reflect dying factor) may be C consists LTC-C) overall, averaged for overall of 5 circumstances quality of dying domains of long term score (range 1-5 (sense of care setting, with higher score purpose, and indicating more closure, administration positive experience) control, to surrogate and individual social respondents factor scores may connection, be used separately preparatory tasks)

Caprio et U.S.; To evaluate 325 Family Not As above As above As above Mean QOD- al. (2008) nursing the nursing caregivers provided LTC score for homes, and relationship home and sample was residential between residential 4.08 with SD care/ pain, care/ 0.67; QOD- assisted dyspnea, assisted LTC scores living and family living higher for

facilities perceptions deaths cognitively of the intact than quality of cognitively dying in impaired long-term residents; QOD- care LTC scores did not differ for residents with and without pain; QOD- LTC scores higher for those with dyspnea than without (conclude dyspnea may alert staff to the need for care)

Good-Death Scale

Tsai et al. Taiwan; To 224 Multi- A good Based on 5 factors: Not reported No significant (2005) hospital investigate palliative disciplinary death is Weisman’s awareness of dying, differences palliative the cancer team one in definition of peaceful between non- care unit relationship patient which a good death acceptance, elderly and between deaths patient’s arranging one’s elderly groups the death suffering will, timeliness/ with respect to fear level is reduced preparation for total good death and good- as much death, degree of scores (mean death scale as physical comfort; score 13.44 for in two age possible each factor scored <65 and 13.05

groups and death 0-3 and summed for for>65); a is accom- total score 0-15 significant panied by with higher score negative dignity; indicating better correlation includes death between degree aware- of death fear ness, and total good accept- death score ance, arranging will and appropriate timing of death

Yao et al. Taiwan; To 374 Multi- As above As above As above; Reported Total good- (2007) hospital investigate palliative disciplinary evaluations reliability death score in palliative whether cancer team completed after and validity home-death care unit dying at patient patient admission already group higher home deaths and prior to death established than that in influences (usually in hospital-death likelihood retrospectively) Taiwanese group at of a good palliative admission death care units (12.80 vs. and 10.81, p<0.001) referenced and prior to Tsai et al. death (14.13 vs. (2005); 13.48, p<0.01); good bereavement internal support,

consistency alleviation of (Cronbach’s anxiety, alpha 0.76) decision- making participation, fulfillment of last wish, and survival time were independent correlates of good death score but place of death was not

Cheng et Taiwan; To 355 Multi- As above As above As above; Reported Total good al. (2008) hospital investigate palliative disciplinary evaluations reliability death scores palliative the good cancer team completed and validity increased care unit death status patients following patient already significantly for of elderly death established both elderly patients in and younger with Taiwanese from admission terminal palliative to just prior to cancer, care units death; total comparing and good death elderly and referenced scores were not younger Tsai et al. significantly groups and (2005) and different for exploring Yao et al. elderly (10.94) factors (2007); versus younger related to expert panel (10.84) group at

good death determined admission but score content were validity; significantly face validity lower for confirmed elderly (13.52) by bereaved versus younger family (14.17) prior to members; death; elderly good group had internal significantly consistency lower scores in (Cronbach’s awareness, alpha 0.71) propriety and timeliness than younger group prior to death; respect for autonomy and verbal support were independent correlates of the good death score in the elderly group

Quality of Dying and Death (QODD)

Curtis et U.S.; To describe 205 non- Original Quality of Based on 31 items and 6 Good Mean QODD al. (2002) community the validity sudden conceptual dying and literature domains: symptoms construct 67.4, range of the deaths model death is review, and personal care, validity, from 26 to 97;

QODD incorporated the degree qualitative treatment high internal higher QODD both patient to which interviews on preferences, time consistency scores were pre-death a person’s domains of with family, whole (Cronbach’s associated with preferences prefer- dying and person concerns, alpha 0.89) death at home, and after- ences for death, review preparation for death in a death dying and of existing death, and moment location the reports of the instruments of death; each item patient desired,

the dying moment scored from 0 lower symptom experience of death (terrible burden, better but the are experience) to 10 ratings of question- consistent (almost perfect symptom naire was with experience); mean treatment, admin- other’s score multiplied by communication istered observ- 10 to construct about treatment retro- ation of scale from 0 to 100 preferences, spectively to how with higher scores compliance family person indicating better with treatment members actually quality of death preferences, died family satisfaction regarding communication with the health care team, and availability of a health care team member at night or on weekends

Patrick et U.S.; To describe 205 non- Patient’s As above As above As above As above Hospice patient al. (2003) community quality of sudden loved ones total QODD and death in community scores not hospice community deaths and provided; sample 62 hospice higher QODD (same data patient scores of home as Curtis et deaths hospice patients al., 2002) associated with and amount of time hospice patients spent sample with providers, how often providers explained treatments, how often treatment plans followed, better ratings of care, quality of life and moment of death

Hodde et U.S.; To 178 ICU ICU nurses Not Items selected 14 item QODD for High Mean QODD al. (2004) hospital determine patient provided from QODD nurses internal score 73.1, SD ICU feasibility deaths for use in ICU consistency 21.4; higher of nurse with nurse (Cronbach’s scores ratings of respondents; alpha 0.96) independently quality of based on focus predicted by

dying and group with someone death in ICU nurses; present, no CPR ICU and item regarding in last 8 hours, associated sedation added and being cared factors for by neurosurgery or neurology

services

Mularski U.S; To measure 38 ICU Family Not Items selected 23 item ICU Moderate Mean QODD et al. hospital agreement patient members provided from QODD QODD inter-rater score 57 and (2004) ICUs among deaths for use in ICU reliability ICU QODD family among score 60; members family moderate who rate members agreement loved one’s among family ICU dying members experience

Treece et U.S.; To evaluate 117 ICU ICU nurses Not Referenced 14 item QODD for Responsive Mean pre-order al. (2004) hospital a patient provided Hodde et al. nurses ness to QODD 78.3, ICU withdrawal deaths (2004) change not SD 16.7 and of life demon- post-order support strated QODD 74.2,

order form SD 21.7; no significant change in QODD scores after intervention

Mularski U.S.; To explore 38 ICU Family Not Referenced 23 item ICU As above Mean QODD et al. hospital quality of patient members provided Mularski et al. QODD 60 , SD 14; (2005) ICUs dying deaths (2004) higher ICU experience QODD scores and associated with associa- control of pain, tions to control of higher events, peace quality with dying and ratings for dignity/self- people who respect died in ICU

Levy et al. U.S.; To 68 ICU Nurses, Not Items selected 21 item ICU Low inter- Mean QODD (2005) hospital compare patient resident provided from QODD QODD rater family 77.7, SD ICUs perceptions deaths physicians, for use in ICU reliability 9.3, physicians of quality attending among 81.5, SD 17.3, of dying physicians nurses, residents 67.8, and death and family physicians, SD 22.5, nurses in ICU members residents 66.9, SD 16.3; across and family QODD scores nurses, in ICU varied resident considerably

physicians, between nurses, attending physicians, physicians resident and family physicians and members family members; family and physicians gave most favourable ratings compared to nurses and residents

Glavan et U.S., To identify 365 ICU Family Not Items selected 22 item ICU As above Mean QODD al. (2008) hospital chart-based patient members provided from QODD QODD (QODD- 61.8 with SD ICUs markers deaths use in ICU 22); 1 item overall 23.8; mean that could with family quality of dying and QODD-1 score be used as member death rating was 6.9 SD 3.1; measures respondents (QODD-1) Higher QODD- for 22 scores improving associated with end-of-life documentation care of a living will, absence of cardio- pulmonary resuscitation performed in the last hour of life, withdrawal

of tube feeding, family presence at time of death, and discussion of the patient’s wish to withdraw life support during a family conference; additional correlates with higher QODD- 1score included use of standardized comfort care orders and occurrence of a family conference

Curtis et U.S.; To evaluate 523 ICU Family Not Referenced 21 item ICU ICU QODD Family QODD al. (2008) hospital effectivene patient members provided Hodde et al. QODD for family for nurses showed trend to ICU ss of a deaths and nurses (2004) and members and 14- demon- improvement multi- Mularski et al. item ICU QODD strated (pre, 62.3; post faceted (2004) for nurses responsive- 67.1) but was quality ness to not statistically improve- change significant; ment inter- nurse QODD vention to showed

improve significant palliative improvement care in the (pre, 63.1; post, ICU 67.1; p<0.01)

Client Generated Index (CGI) and McGill Quality of Life (MQOL)

Bridge et Australia; To assess 14 Family/ Quality of The CGI and CGI modified to Authors Neither tool al. (2002) home quality of palliative friend death is MQOL are ask for list of referenced found to be palliative dying of care patient caregivers quality of existing client’s comorbid previous feasible as a care palliative deaths life of the measures conditions, list of reports of proxy measure organizatio care client in designed to up to 5 areas most measure- of quality of n patients the last assess patient impacted by illness, ment death due to and to two days quality of life grading of areas of properties of caregiver compare alive living and both difficulty the conditions on scale measures perceiving what usefulness from 1 to 10, although no patient and prioritized spending reported experienced and feasibility of 12 points on testing of due to their of the areas of living and reliability or focus on their Client comorbid validity of own grieving Generated conditions as would either experiences and Index have been measure as reflections; (CGI) and preference of client a retro- authors reported McGill if possible to spective CGI scores Quality of improve impact proxy were well Life (higher scores measure, toward the question- worse quality of CGI not maximum naire death); MQOL tested for worse scores (MQOL) examined 5 reliability or while MQOL tools for domains with validity with scores were

assessment preselected palliative midway of quality variables including care although actual of death in physical symptoms, patients; scores not palliative physical, reported provided care psychological and poor face patients existential validity of wellbeing, and both tools as support (higher measures of scores better quality quality of of death); both death by measures caregiver administered proxy retrospectively to caregiver proxies regarding the patient’s last two days of life

Table 3. Ad hoc instruments measuring quality of dying and death.

Paper Setting and Objective Population/ Source/ Definition Basis for Measure Reported Quality of Authors Population Type of Respondent of Quality Measure Description Measure Dying and Death Used of Dying Development Properties Death Evaluated and Death Evaluations

Dialysis Discontinuation Quality of Dying (DDQOD)

Cohen et U.S.; To 11 dialysis Health care Not Based on 3 domains: pain High inter- Scores not al. (1995) dialysis examine patient providers provided expert opinion and suffering, rater provided; 7/11 clinics quality of deaths after and literature psychosocial reliability had good dying discon- review factors, shorter terminal courses following tinuing duration of dying; dialysis treatment each domain termin- given score from ation 1 to 5 and summed for

overall score 3 to 15 with higher

scores indicating better quality of

death

Cohen et U.S. and To 79 dialysis Health care Not As above As above As above Scores ranged al. (2000) Canada; examine patient providers provided from 4 to 15 dialysis quality of deaths after with mean of clinics dying discon- 11.4 (+0.3); following tinuing 38% of subjects

dialysis treatment had very good termin- deaths (>12), ation 47% good deaths (>8-12) and 15% bad deaths (< 8)

The quality of death (QOD)

Wallston U.S.; To Cancer Principal Quality of Based on 13 items: Not reported Mean score et al. hospitals compare patient care death is descriptive presence of 79.4 (SD 21.8), (1988) and quality of deaths providers exper- data from significant others, range 1.4 to hospices death of (number not iencing in 1000 physical ability, 136.1 (total patients provided) the last terminally ill freedom from possible not receiving three days patients pain, provided); hospital of life regarding peace/happiness, better quality of versus feelings and what wanted ability to maintain death associated hospice events that last 3 days of normal activities, with hospice care terminally life to be like ability to stay versus non- ill patients home as long as hospice patients reported wanted, to be at they desired peace with god, to die in sleep, to be mentally alert, to complete tasks, to accept death, to know when death is imminent, and to live until a key

event has occurred; items coded 1 (present) or 0 (not present) and weighted according to the number of patients who mentioned a given item and multiplied by 100; total score produced by summing item scores with higher scores indicated better quality of death

Yancey & U.S.; To 43 cancer Family and As above As above As above Reported Mean quality of Greger community determine patient friends of construct death score 65.3 (1990) whether deaths patients validity for hospital, the demon- 63.75 for home, circum- strated due 53.18 for stances of to extended care a cancer significant facility; no death differences association with influence in the quality of death the grief quality of and grief resolution death scores resolution in the of the by mode of family member

survivor at care; 1 month after one month reported death after death Cronbach’s alpha 0.63

Single use instruments

Ray et al. U.S.; cancer To Advanced Hospital/hos Not reported Not reported Single item; Not reported Mean quality of (2006) centres examine cancer pice staff or quality of death scores the way in patient informal death/last week of ranged from which deaths (280 caregivers life rated on scale 5.06 to 7.09 ; patients’ patients (whoever of 0 (worst peacefully baseline enrolled, last attended possible) to 10 aware patients awareness number of to patient (best possible) had higher of follow-ups before overall quality terminal not death) of death scores illness and reported) sense of peace influence their mental health, advance care planning, quality of

death, and caregiver bereavement outcomes

Cohen et U.S.; To 86 dialysis Family Not Based on As part of the Not reported 64% had al. (2005) dialysis describe patient members provided review of Post-Death peaceful deaths; clinics how deaths existing Family 58% died with dialysis instruments Questionnaire much dignity patients (PDFQ), quality die of dying evaluated by asking whether patient had peaceful death, scored 0 (no) 1 (unsure) or 2 (yes); and whether patient died with dignity, rated on scale 1 (very much to 5 (not at all)

Ethunanda U.K.; To 32 head and Review of A good Based on Aspects of death Not reported All symptoms n et al. hospital evaluate neck cancer admin- death as review of described: managed except (2005) the quality patient istrative defined by literature to symptoms, for neuropsych- of the deaths data Cohen et al. determine location of death, ological

dying (2001) is important presence of problems, 63% experience one that is indicators of relatives, CPR died in hospital of head pain free, care and ICU and 22% and neck peaceful, admissions, relative present, cancer dignified, at resuscitation 65% patients a place of status; emergency resuscitation choosing admissions; status with incontinence, documented, no relatives infection, ICU or CPR, present and bleeding 53% admitted without to ER in last futile heroic month of life intervention

Carr U.S.; To 210 elderly Spouses A good Not reported Aspects of death Not reported Overall good (2003) community evaluate married death is considered death scores not how person character- included provided; quality of deaths ized by acceptance, pain, positive spousal older physical timeliness, relationship and adult’s comfort, spousal pain associated death social interactions, with spousal affects the support, presence of adjustment 6 surviving acceptance, family, place of months after spouse’s and death, degree of loss psycho- appropriate family burden, logical medical full/rewarding adjust- care, and it life; overall good ment 6 should death score months minimize computed by after loss psycho- summing total logical number of

distress for positive death dying and attributes; scores their range 0 to 10 families

Ganzini et U.S. To 140 nurse Nurses Not reported Not reported Single item; Not reported Quality of death al. (2003) (Oregon); compare reports of quality of process of patients who hospice deaths of hastened of dying rated on voluntarily programs hospice hospice a scale from 0 refused food patients patient (very bad) to 9 and fluids and who deaths (very good) who had hastened physician- death by assisted suicide refusing had median food and score 8; 92% of fluids with deaths rated as those who good (score of 5 hastened to 9) and only death by 8% rated as bad legalized (score 0 to 4); physician- bad deaths assisted significantly suicide higher (quality of suffering, pain death was and younger a studied age outcome)

Keay et al. U.S.; To 203 nursing Chart Not reported Based on Aspects of death Not reported Nursing (2003) nursing determine home review consensus of described facilities that homes if an resident Maryland included completed the

education- deaths medical recognition of intervention had al directors and possible death, significant intervene- nationally presence of improvements tion recognized advanced in outcomes designed physicians; directives, pain for quality of care control, nursing indicators analgesics used, home found to dyspnea control, physicians correspond to control of improves other uncomfortable the quality measures of symptoms, of dying quality of care documented for in previous hygiene, nursing research by documented home the first bereavement residents author support, total patient comfort; no summary quantification

Reynolds U.S.; To 80 nursing Nurses, Not reported Based on Single item; Not reported 58% of et al. nursing describe home aides, review of yes/no response respondents (2002) homes the patient family literature, to question reported good palliative deaths members other regarding whether death care needs instruments or not they of dying and series of believed the nursing focus groups; resident’s dying home pilot tested experience was a residents “good death— during the how he/she would last 3 have wanted it”

months of life

Flacker et U.S.; long To 27 long Primary Not reported Not reported Single item; Good inter- Mean scores al. (2001) term care examine term care care team quality of death rater ranged from facility and patient (physicians, rated on scale reliability 3.67 to 3.72; no deaths compare deaths nurses, from 1 given no differences whether nurses’ (terrible/uncomfo significant among differ- aides) rtable) to 4 difference respondents ences in (peaceful) across with respect to percep- respondents quality of death tions regarding aspects of end of life care exist as viewed by different members of long term care primary care team

Peruselli Italy; home To 401 home Palliative Not Based on Aspects of death Not reported 90% died in the et al. palliative describe palliative care team provided internal audit described desired place, (1999) care units place, care patient of steering included desired 2% died alone, circum- deaths committee’s place of death, 31% died stances members someone present peacefully, 18% and at time of death, had pain, 28%

quality of peacefulness, dyspnea, 12% death of symptom control emesis, 25% home (pain, dyspnea, were totally palliative emesis), need for pharmaco- care total logically patients pharmacological sedated, 34% sedation in last 12 were conscious hours of life, state until death, 84% of consciousness, of families patient’s contacted the awareness of the team after situation, relative’s death, performance of 2% died alone, life-saving 56% of patients procedures, received rituals related to invasive death, family instruments, 1% members had life-saving contacting team procedures, after patient’s 47% had rituals death, invasive related to death procedures and instruments implemented at the time of death; no summary quantification

Swartz & U.S.; To 182 chronic Renal team Not reported Not reported Single item; Not reported 50% of deaths Perry dialysis examine dialysis and respondents rated as good; (1993) program the effect patient surviving provided better death

of prior deaths family subjective associated with advance members assessment of advance directives case outcome directive and on chronic with score of 0 with withdrawal dialysis (unsatisfactory), 1 as opposed to patient (satisfactory), 2 “unreconciled” deaths (good); scores or sudden death summed to yield a composite score of < 1 (unsatisfactory), 2 (satisfactory), and > 2 (good)

Chapter 5 Understanding Evaluations of the Quality of Dying and Death

A version of this was previously published as:

Hales S, Gagliese L, Nissim R, Zimmermann C, Rodin G. Understanding bereaved caregiver evaluations of the quality of dying and death: An application of cognitive interviewing methodology to the Quality of Dying and Death (QODD) questionnaire. J Pain Symptom Manage 2012; 43:195-204.

All authors were involved in the conceptualization and design of the paper. Dr. Hales completed the literature review, initial data analysis and and initial draft. Drs. Gagliese, Nissim, Zimmermann and Rodin consulted on the data analysis process and were involved in revising manuscript drafts. All approved of the final version.

5.1 ABSTRACT

Context: To increase the interpretability of quality of dying and death measures, research is needed to understand potential sources of response variation.

Objectives: The aim of this study was to understand how bereaved caregivers assess the quality of dying and death experience with the QODD by exploring the cognitive processes that underlie their evaluations.

Methods: Bereaved caregivers of former metastatic cancer patients were asked to take part in a cognitive interview protocol after formulating the 31 quality ratings that contribute to the total QODD score. Qualitative content analysis was applied to transcribed interviews with a specific focus on the information retrieved, the judgment strategies used, and any difficulties participants reported.

Results: Twenty-two bereaved caregivers were interviewed with the protocol. Information that formed the basis of quality ratings referred to the perspective of the patient, the caregiver, other family/friends, or a combination of perspectives. Quality rating judgment strategies were generally comparative and the most common standards of comparison were to “a hoped for or ideal dying experience”, “a state prior to the dying phase”, “a state of distress/no distress”, or “normalcy/humanness”. All respondents relied on multiple perspectives and standards of comparison when answering the QODD.

Conclusion: These results suggest that the quality of dying and death is a complex construct based on multiple perspectives and standards of comparison. These findings have implications for clinical care, which, if it aspires to improve how dying and death is evaluated, must ensure the family is the unit of care and aid in preparation for the dying and death experience.

5.2 INTRODUCTION

If the “good death” is a goal of modern health care, research methods that go beyond enumeration of patient symptoms in the last week of life, and meaningfully capture

subjective evaluation of the multiple dimensions of the quality of dying and death experience, are required. Measures that evaluate the dying and death experience across large samples could explore determinants of better deaths and provide meaningful outcomes for interventions that aim to improve end of life care. However, the development, testing and validation of measures to assess the quality of dying and death have proved challenging (Hales et al., 2010). Even after careful design and application in numerous studies, the interpretability of such measures has been questioned (Kaasa & Loge, 2003; Steinhauser, 2005; Teno, 2005).

Most instruments attempting to quantify the subjective evaluation of the multidimensional experience of the final days of life, such as the Quality of Dying and Death questionnaire (QODD) (Curtis et al., 2002) - the most reliable and valid measure of quality of dying and death currently available (Hales et al., 2010) - are administered to bereaved caregivers or health care providers after patient death. While after-death assessments of this kind are the most feasible means to study the dying and death phase, as proxies for patient experience, concerns have been raised regarding the potential influence of the emotional state and frame of reference of the caregiver, motivation to recall, and the impact of the time elapsed since the death of the patient on recall of events (Addington-Hall & McPherson, 2001). It is also recognized that numerous differences (e.g. diagnosis of the deceased, individual psychology, cultural group, and social roles of the patient and the caregiver) may influence how the quality of dying and death is constructed and therefore contribute to variability in dying and death evaluations (Hales et al., 2008).

With respect to the QODD in particular, previous research has raised questions about the reliability and validity of respondent evaluations. Mularski et al. (2004) found only moderate concordance among family member QODD scores and Levy et al. (2005) found that family members and physicians tended to give more favorable ratings of ICU deaths than nurses and residents. These study authors suggested that sources of variation in the ratings of the same death could include both “noise” or measurement error and “real differences” due to different experiences or interpretations of these events. To enhance

the interpretability of the QODD and similar quality of dying and death evaluations, research is needed to better identify potential sources of variation. More specifically, greater understanding of the information and strategies that respondents use to judge the dying and death experience would shed greater light on the meaning and significance of test scores.

Cognitive interviewing is a qualitative methodology that closely examines the question and answer process. It is increasingly used to improve survey and questionnaire construction, explore potential threats to validity and reliability, and to inform how measures are implemented and the way in which resulting quantitative data is interpreted (McColl et la., 2003; Murtagh et al., 2007). Cognitive interviewing is based on theories of survey response, such as Tourangeau, Rips and Rasinki’s (2000) 4-stage model of comprehension, retrieval, judgment and response. There are a number of variations on the 4-stage model, such as Rapkin and Schwartz’s (2004) model of quality of life appraisal which, due to the similarity in required cognitive processes, could be adapted to quality of dying and death appraisal. Their model’s four meta-categories are: 1) frame of reference (i.e. experiences individuals deem relevant to their response); 2) sampling strategy (i.e. the specific experiences that are sampled); 3) standards of comparison (i.e. subjective standards by which the experience is judged); and 4) the combinatory algorithm (i.e. the summative evaluation of relevant experiences and formulation of a response).

Cognitive interviewing has been used previously to examine the limitations of after-death methodology and to understand better what factors bereaved caregivers take into account when they respond to a structured questionnaire regarding the symptoms of dying patients. McPherson and Addington-Hall (2004) used a cognitive interview protocol to study the underlying mental process of family members who provided after-death proxy ratings of patient pain, anxiety and depression as part of the VOICES (Views of Informal Carers-Evaluation of Services) questionnaire (Addington-Hall et al., 2005). To date, no study has used cognitive interviewing with a quality of dying and death measure such as the QODD. The aim of the present study was to understand how bereaved caregivers

assess the quality of dying and death experience with the QODD, by exploring the cognitive processes that underlie their evaluations. Particular attention was focused on: 1) the information that provided the basis of quality rating judgments; 2) quality rating judgment strategies; and 3) any response difficulties encountered.

5.3 METHODS

5.3.1 Participants and Recruitment

This present study was conducted as part of an ongoing longitudinal study of the quality of dying and death in patients with metastatic gastrointestinal and lung cancer, and the subsequent bereavement morbidity in their caregivers. Consecutive patients attending outpatient oncology clinics at Princess Margaret Cancer Centre, a comprehensive cancer center in Toronto, Ontario, Canada, were recruited to participate. Patient deaths were subsequently identified through regular review of hospital records, obituary records, and inquiries made to patients’ family physicians.

Six months after patient death, a letter was sent to the patient-identified primary caregiver, informing them that they would be contacted by telephone regarding this study. The letter included a voicemail telephone number that they could call if they did not want further contact. One week after the letter was sent, the bereaved caregiver was contacted by telephone and invited to take part. If they were interested, an in-person or telephone interview was scheduled for 8 to 10 months after patient death, at which time an interview (the QODD) and self-report questionnaire package were completed. Since deaths might have occurred in locations outside of the hospital, investigators could not rely upon hospital records alone to identify patient deaths. The 6-month time frame was therefore required to search obituary records and to contact patients’ family physicians to ensure identification of the maximum number of patient deaths in the sample. A convenience sample of bereaved caregivers was asked to take part in a cognitive interview protocol while answering the QODD. This protocol made the interview more complex and therefore was introduced only when the interview was conducted in-person. These interviews were audiotaped and transcribed.

5.3.2 Measures

Patient and caregiver demographics (age, gender, ethnicity, country of birth, level of education, and household income), specific caregiver variables (primary language of the caregiver and the nature and length of the patient/primary-caregiver relationship), and patient illness variables (cancer type, length of illness) were obtained via patient chart review and caregiver self-report questionnaires

The quality of dying and death was measured with the Quality of Dying and Death questionnaire (QODD) (Curtis et al., 2002). This 31- item measure is administered to family members or health care providers after patient death and asks for evaluation regarding events in the last week, or, if patient was unconscious, the last month of life. It inquires about aspects of symptoms and personal care, treatment preferences, time with family and friends, whole person concerns, preparation for death, and the moment of death. For each item, respondents are asked first whether or how frequently an event occurred and then to provide a quality rating for that item with the question “How would you rate this aspect of the patient’s dying experience?” on a scale from 0 to 10 (with 0 representing a terrible experience and 10 representing an almost perfect experience). These 31 quality scores are averaged and multiplied by 10 to generate a QODD total score on a scale from 0 to100. Since initial publication, the measure’s developers have reported on several shortened versions of the QODD intended to reduce respondent burden (Downey et al., 2009) or to apply in the ICU setting (Curtis et al., 2008), but the full 31-item QODD was used in the present study,.

5.3.3 Cognitive Interview Protocol

During the administration of the QODD interview to bereaved caregivers, participants were asked to verbalize their thought processes after answering each of the 31 quality rating questions. This retrospective probing cognitive technique is distinct from a purely concurrent “think-aloud” technique, in which respondents are asked to describe their answering process as they complete the questionnaire, and has been deemed easiest for respondents in face-to-face interviews (Collins, 2003). Two probes were used to access the information retrieved and the judgment strategies that respondents relied upon in

providing quality ratings. These were: 1) “What were you thinking about when you answered that question?”; and 2) “Why did you give it that rating?”. If subjects expressed any difficulty providing a quality rating they were asked “Why is this question difficult for you to answer?”.

5.3.4 Analysis

Qualitative content analysis was applied to transcribed interviews, with a specific focus on the information retrieved, the judgment strategies used, and any difficulties participants reported while formulating the 31 QODD quality ratings. Analysis was both inductive and deductive, beginning with fixed categories and subsequently allowing categories and codes to emerge as the analysis progressed until saturation. The initial coding scheme was informed by that used by McPherson and Addington-Hall (2004) in their evaluation of the VOICES questionnaire, based on Tourangeau, Rips and Rasinki’s (2000) 4-stage model of survey response which categorizes verbal processes as relating to comprehension, retrieval, judgment and response. For the purposes of this study, the foci were primarily the information respondents used as the basis of their judgments, which related most to their processes of comprehension and retrieval, and the judgment strategies that they employed, which related most to the processes of judgment and response. Response difficulties, it was understood, might be found at any stage of the answering process. SH conducted initial analysis of the interview transcripts. To ensure valid interpretation of subject responses, comprehensiveness, and appropriateness of analysis, meetings were held with co-investigators LG, RN and GR throughout the analysis process. Coded transcripts were reviewed and compared, and category descriptions were reviewed, amended or further developed until consensus among the group was reached. The iterative process of data collection and analysis continued until saturation.

Statistical analysis was used to describe sample characteristics, quality of dying and death scores, and the frequency of coded categories.

5.4 RESULTS

5.4.1 Sample Characteristics and QODD Scores

Twenty-two bereaved caregivers evaluated 22 different patient deaths with the QODD and cognitive interview protocol. No caregivers refused participation in this protocol. Qualitative analysis was concurrent and recruitment for this protocol was closed when saturation was reached. Characteristics of the 22 patients and bereaved caregivers and QODD scores are presented in Table 1. The mean age of patients was 66.2 years and the majority were male, Caucasian, Canadian born, with education beyond high school, and household income greater than $60 000 per year. The mean age of the caregivers was 59.0 years and the majority were female, Caucasian, Canadian born, with education beyond high school. Half of the bereaved caregiver sample had an income greater than $60 000 per year. The majority of caregivers were patient spouses and the average length of the relationship with the patient was 37.5 years. The mean QODD total score was 66.4 (on a 0-100 scale with higher scores indicating better quality of dying and death).

5.4.2 Content Analysis Coding

Analysis of the cognitive processes that provided the basis for evaluations when responding to the QODD focused on: 1) the information retrieved; 2) the judgment strategy; and 3) any response difficulties reported. A summary of the codes and categories generated by the content analysis with illustrative quotes is presented in Table 2.

The QODD allows for respondents to choose “I do not know”, in response to quality rating questions. If a quality rating was not provided by the respondent (i.e. there was no cognitive process to analyze), this was coded as “not applicable”. If the respondent provided a quality rating but did not communicate what information or judgment strategy provided the basis for their quality rating, this was coded as “no information provided” or “no judgment strategy provided”.

Of note, several respondents had difficulty with the cognitive interview protocol and could not verbalize their thought processes. At least once during their interview, 16/22 caregivers could not explain upon what information they were basing their answers. Similarly, at least once during their interview 17/22 caregivers could not provide details of their judgment strategy.

5.4.3 Information Retrieved

The types of information that provided the basis for the 31 QODD quality ratings were behaviors, communications, thoughts, feelings or values. This information was categorized according to whether it referred to the perspective of patient (i.e. the patient’s behavior, communication, supposed thoughts/feelings/values), the caregiver (i.e. the caregiver’s thoughts, feelings or values), another family member or friend (i.e. the family member or friend’s behavior, communication, supposed thoughts/feelings/values), or a combination of perspectives. Over the QODD as a whole, all respondents relied upon more than one perspective to answer the questionnaire. The most common perspective mentioned was that of the patient (the mean number of times the patients’ perspective was employed over the 31-item QODD interview was 20.0, SD 5.3), followed by that of the caregiver (mean 6.5, SD 4.2), followed by that of another family member or friend (mean 2.2, SD 2.3). The codes and related example quotes are provided in Table 2.

All respondents employed multiple perspectives (i.e. patient, caregiver, and/or other family member/friend) when providing a single rating at least once during the interview with a range across respondents of 1 to 9 uses of multiple perspectives. For example, in response to a probe regarding a 5/10 quality rating for the item which asks whether the deceased said goodbye to loved ones, Respondent #3 said, “I think the fact that he didn’t say goodbye to anybody wouldn’t have really bothered him, and it didn’t really bother us.” This response was coded as referencing all three perspectives: that of the patient, the caregiver, and other family/friends.

5.4.4 Judgment Strategies

Quality rating judgment strategies were generally based on comparisons. Standards of comparison were categorized by type for each of the 31 QODD quality rating questions. The most common standards of comparison were to “a hoped for or ideal dying experience” (the mean number of times this strategy was employed over the 31-item QODD interview was 8.8, SD 3.8), “a state prior to the dying phase” (mean 8.0, SD 4.2), “a state of distress/no distress” (mean 4.1, SD 5.2), and “normalcy/humanness” (mean 1.0, SD 1.3). Some respondents provided an item quality rating that was negative, neutral or positive and explained their rating by saying that the item was “not relevant to the dying and death experience” of the patient (mean 3.5, SD 3.1). Other less frequently used judgment strategies included comparison to “a known past dying experience” or “a modified ideal given known limitations”. The codes and related example quotes are provided in Table 2.

All respondents relied upon more than one strategy to answer the questionnaire, with a mean of 4.5 different strategies used per respondent (SD 1.0). Some respondents employed multiple standards of comparison to generate a single rating, with a range of 0 to 8 uses of multiple standards. For example, in response to a probe regarding a 9/10 rating for an item which asks whether the deceased appeared to be unafraid of dying, Respondent #9 said, “I think because she herself had experienced many people dying, and she had seen people who were afraid…she very much asked for a peaceful death, and I believe she had a peaceful death.” This judgment strategy was coded as both “comparison to a known past dying experience” and “comparison to a hoped for or ideal dying experience”.

5.4.5 Response Difficulties

When respondents had difficulty providing a quality rating for any of the 31 QODD items, they were asked why answering the question was difficult and these responses were coded. Response difficulties were identified by 21/22 caregivers at least once during

the interview. For 16/22 caregivers, this difficulty was great enough to prevent them from providing a quality rating at least once in the interview, although in the majority of instances, caregivers still provided a rating despite indicating a response difficulty. Of those response difficulties reported, the most common reasons coded were “no communication with the patient regarding that aspect of experience”, followed by “question deemed irrelevant/not applicable”, followed by “unclear question meaning/wording”.

Of the 31 quality rating items in the QODD, 25 were associated by the pool of respondents with a response difficulty at least once. The item most commonly associated with difficulty was #25, “Did (patient) have the means to end her/his life if s/he needed to?” and “How would you rate this aspect of (patient)’s dying experience?”, with 7/22 respondents having difficulty answering these questions. The most common reason given for this difficulty was “unclear question meaning/wording”, reported by 4/7 respondents because they were unsure if they were meant to report on patient suicidality. Both item #6, “How often did (patient) appear to feel at peace with dying?” and “How would you rate this aspect of (patient)’s dying experience?”, and item #17, “Did (patient) appear to find meaning and purpose in her/his life?” and “How would you rate this aspect of (patient)’s experience?”, were associated with difficulty for 6/22 respondents. For both of these items, the most common reason coded for the difficulty was “no communication with the patient regarding that aspect of experience” (4/6 respondents and 3/6 respondents respectively).

5.5 DISCUSSION

This study is the first to use cognitive interviewing methodology to evaluate a measure of the quality of dying and death. In answering the QODD, bereaved caregivers most often relied upon the patient perspective, but all also incorporated their own perspective and/or that of family and friends. This may occur because the bereaved caregiver and other family members are participant-observers in the death experience of the patient and may also have been the recipients of end of life care. As the disease progresses and patients become more debilitated and perhaps spend less time in a conscious state, caregivers

often become more involved in the dying experience. This may include tending to the needs of the patient, communicating and liaising with health care providers, and receiving practical and emotional support to alleviate their own distress. The use of multiple perspectives by caregivers to evaluate the end of life experience therefore may reflect a summated, rather than individualized proxy-for-patient approach, which matches the nature of end of life care delivery.

In judging the quality of the dying and death with the QODD, bereaved caregivers took into account multiple standards against which the end of life experience could be compared. The most common standards applied were those of an ideal or hoped-for dying experience and the state prior to the dying phase, although there was variability amongst bereaved caregivers in their reliance on different comparative strategies. These results suggest that individual values, past experiences or expectancies shape whether a particular death experience is judged positively or negatively. In other words, when asked to evaluate whether a death experience was “good” or “bad”, respondents must consider “for whom?” and “compared to what?”

Reliance on different perspectives and standards of comparison may partly explain the reported variability in QODD scores obtained from different raters, with respect to a single patient death (Mularski et al., 2004; Levy et al., 2005). Such variability in the processes that shape responses to the QODD may be regarded as threats to its reliability and validity. Indeed, individual variation in survey response is often perceived as a phenomenon that confounds interpretation of pooled quantitative results (Norman, 2003). It may be argued that such findings justify amendment of questionnaires to allow for more uniform responses. Alternatively, the demonstration of such variability might serve to adjust our understanding of the underlying constructs that are being measured. In this case, the reliance of bereaved caregivers on multiple perspectives and multiple comparisons in rating the quality of dying and death may reflect the multi-determined nature of this construct, which cannot be simplified by rewording or redesign of the questionnaire.

This use of multiple perspectives and standards of comparison parallels findings in the field of the quality of life evaluation (Rapkin & Schwartz, 2004). Quality of life measures have not been found to distinguish consistently amongst groups of raters, are often only weakly related to objective criteria of functioning, and show little convergence across measurement perspectives. It is acknowledged that quality of life evaluations may be informed by such personal reference points as prior functioning, lost capacities, extreme experiences, observations of others, past encounters with illness, and communication from providers. Rather than considered to reflect measurement bias, denial or willful distortion, however, these differences in quality of life appraisal are presumed to reflect individual differences and intra-individual changes in internal standards, values and meaning of quality of life. These differences, it has been argued, if well understood, could serve as potential targets for clinical intervention (i.e. helping patients to reprioritize values and priorities for more adaptive coping and adjustment) (Rapkin & Schwartz, 2004). The individual differences in values, experiences, and expectations that influence evaluation of the quality of dying and death may similarly be potential targets for clinical intervention. Discussions with patients and family members throughout the illness course about possible future events, what to expect and how best to prepare, may help shape how the dying and death experience is ultimately evaluated.

Examination of response difficulties in providing quality of dying and death ratings was another objective of this study. We found that the majority of caregivers reported difficulty providing a quality rating at least once in their QODD interview and that the majority of QODD items were associated with difficulty in at least one of the interviews. In some cases, caregivers identified a response difficulty and declined to provide a quality rating whereas in other cases caregivers identified a response difficulty but nevertheless provided a rating. Differences in response difficulty may contribute to response variability.

While all quality ratings required respondents to assess the subjective experience of the patient, the questions associated with the most difficulty were those that asked about more internal experiences (e.g. meaning in life or peace with dying) or about aspects of

end of life experience that might have been difficult for patients and caregivers to discuss openly (e.g. means to end life if needed or peace with dying). These findings are supported by previous research indicating that proxies are most accurate with respect to concrete, observable aspects of the patient experience but less accurate with respect to patients’ subjective states (Addington-Hall & McPherson, 2001). Although eliminating items referencing more internal experience or sensitive topics would increase the weighting of patient experience, this would omit items considered highly relevant to the quality of dying and death construct. An alternative approach that may improve the validity of the after-death evaluation of the patient’s experience would be pre-death identification by the patient of the caregiver they regard as the best and most reliable source of information.

Examination of other response difficulties suggests strategies that might improve the quality of some QODD item responses. For example, given that “unclear question meaning/wording” was a common reason for response difficulty, providing additional explanation for some items (i.e. a definition for meaning and purpose in life) may assist some respondents in providing responses. Similarly, because “question deemed irrelevant/not applicable” was another common reason for response difficulty, providing respondents with the option of not answering because an item was irrelevant and/or allowing respondents to rate the relative importance of items might improve the validity of total scores. A 17-item QODD, based on research in which terminally ill patients and their associates prioritized rankings of QODD items (Downey et al., 2009), partly addresses this issue but ultimately sacrifices some comprehensiveness and cannot account completely for the individual and shifting nature of end of life priorities as patients and families move through the course of disease. In summary, as with other questionnaires attempting to measure constructs that are highly individual and subject to change over time, comprehensive global measures yielding summative scores are challenging to interpret when applied to large populations.

There are limitations to this study. The use of cognitive interview methodology assumes that questionnaire respondents follow a logical or at least understandable process of

response. It also is based on the assumption that respondents have conscious access to their cognitive processes as they answer questions and that they will report this information honestly and accurately, which may not be the case. Further, the majority of this sample had difficulty at least once in the cognitive interviewing process, which suggests that this is a challenging task for most individuals. An additional limitation is the small sample size and its homogeneity with respect to ethnicity and language which limits generalization of the findings.

Some potential sources of variability in response could not be explored with the methodology of this study and should be the focus of future research. These include error in memory or recall and the impact of time elapsed since death. Interestingly, no caregiver suggested that the inability to remember details of the time period in question caused response difficulty, even though all interviews were conducted 8 to 10 months after patient death. This may suggest that events near the end of life are highly salient and therefore vividly recalled, even though other memories may fade over time. However, this does not rule out possible retrospective bias and revision. This study focused on bereaved caregivers and how non-family respondents (such as nurses or physicians), make quality of dying and death judgments, and the potential influence of respondent psychological characteristics such as distress and empathic ability, remain areas for future research using cognitive interview methodology.

In conclusion, the results of the present study suggest that the quality of dying and death is a complex construct based on multiple perspectives and standards of comparison. Rather than being seen simply as errors or distortion in the measurement process, these multiple perspectives and standards may be viewed as valid targets for end of life care. Clinical attention to the family as the unit of care and to values, past experiences and expectations in advance care planning may help insure that the end of life is ultimately remembered and judged as positively as possible.

Table 4. Sample characteristics and QODD scores (n=22). Patient Age Mean 66.2 years, SD 13.0, range 34.3-88.8 Variables Gender Female 8 (36.4 %) Male 14 (63.6%) Ethnicity Caucasian 21 (95.5%) Other 1 (4.5%) Country of birth Canada 14 (63.6%) Other 8 (36.4%) Education < High school 6 (27.3%) > High school 16 (72.7%) Household income < $60 000/year 6 (27.3%) > $60 000/year 16 (72.7%) Primary cancer Gastrointesinal 14 (63.6%) Lung 8 (36.4%) Time from diagnosis Mean 39.3 months, SD 33.3, range 4.5-135.6 to death Caregiver Age Mean 59.0 years, SD 13.8, range 28-80 Variables Gender Female 17 (77.3%) Male 5 (22.7%) Ethnicity Caucasian 21 (95.5%) Other 1 (4.5%) Country of birth Canada 18 (81.8%) Other 4 (18.2%) Primary language English 22 (100%) Other 0 (0 %) Education < High school 6 (27.3%) > High school 16 (72.7%) Household income < $60 000/year 11 (50%) > $60 000/year 11 (50%)

Relationship to patient Spouse 15 (68.2%) Parent 1 (4.5%) Son/daughter 4 (18.2%) Friend 2 (9.1%) Length of Mean 37.5 years, SD 15.6, range 3-58 relationship with patient Quality of QODD total score Mean 66.4, SD 10.3, range 48.7-88.9 Dying and Death

Table 5. Content analysis coding scheme.

Code Description Example Quote

Information Perspective of patient Respondent #4, in response to probe regarding Retrieved 7/10 quality rating for item which asks whether deceased appeared to have her/his pain under control: “Well, even though he was in pain a fair amount, it was important to him to remain lucid and in control.”

Perspective of Respondent #7, in response to probe regarding caregiver 9/10 quality rating for item which asks about deceased’s time with other family and friends: “Well, that was good for me. Because for me…for them coming around… it was mostly for me. And that’s what [he] didn’t understand. He’d be like, ‘What are they doing over here again?’”

Perspective of other Respondent #7, in response to probe regarding family/friend 0/10 quality rating for item which asks whether deceased said goodbye to loved ones: “It would have been nice if he said to the kids…I would have liked him to say… for their self- esteem…‘You are…you’ve been a good son.’”

Judgment Comparison to hoped Respondent #20, in response to probe Strategy for/ ideal dying regarding 9/10 quality rating for item which experience asks whether anyone was present at the moment of death: “Well, she said she didn’t want to die alone. She got what she asked for. We were there all night long.”

Comparison to prior to Respondent #2, in response to probe regarding dying phase 8/10 quality rating for item which asks whether deceased appeared to keep her/his dignity and self-respect: “That was in his nature. This was one of the things I found, looking back. I did not find Bill to change. The real Bill came out throughout his dying period.

Comparison to state of Respondent #13, in response to probe distress/no distress regarding 7/10 quality rating for item which asks whether deceased appeared to be worried

about strain on her/his loved ones: “I would say… I mean, obviously the less worrying he did the better, right?”

Comparison to Respondent #20, in response to probe normalcy/humanness regarding 3/10 quality rating for item which asks whether the deceased appeared to have the energy to do most of the things she/he wanted to do: “Well if she had no energy, she couldn’t do anything. So she wasn’t behaving like a human being anymore.”

Item reported to be not Respondent #8, in response to probe regarding relevant 5/10 quality rating for item which asks whether the deceased said goodbye to loved ones: “Well, she had done it earlier, so I think it was irrelevant at that stage, so I'd say five.”

Other strategy (e.g. Respondent #9, in response to probe regarding comparison to a known 9/10 quality rating for item which asks whether past dying experience) the deceased appeared to have control over what was going on around her/him: “I would say almost perfect experience. I would have to say of all the people I’ve seen die she certainly was the most courageous person I’ve encountered. Even though she was very, very weak, she was still able to express that and be in control of it.”

Response No communication Respondent #11, following item which asks Difficulty with patient regarding whether deceased appeared to find meaning that aspect of and purpose in life: “I don't know. I guess he's experience the only one who can really tell us that. He never communicated that.”

Question deemed Respondent #15, following item which asks irrelevant/not whether the deceased appeared to feel at peace applicable with dying: “I couldn’t answer that question… I think he didn’t think he was dying, pretty much. Not then. I don't think he thought that going to the hospital for a blood transfusion was going to be his demise, when in fact it was.”

Unclear question Respondent #1, following item which asks

meaning/wording whether the deceased appeared to feel at peace with dying: “I'm not sure whether he was at peace with it, or whether his body was struggling. It's hard for me to distinguish between the psychological aspect of it and the physiological. I know it's all part of the one, the same big melting pot, but they are two different parts.”

Frame of reference Respondent #17, following item which asks uncertain whether anyone was present at the moment of death: “It’s very hard. In my opinion poor, but maybe in his opinion not…You know what I’m saying?”

Difficulty using rating Respondent #3, following item which asks scale where the deceased died: “It's just the wording of this. You see, the thing is that you can't say dying at all is ‘almost perfect experience’. It's so not. It's the worst thing ever.”

No knowledge of event Respondent #10, following item which asks whether anyone was present at the moment of death: “I really don’t know, because I was there until midnight. She died about… I think 4:00 in the morning.”

Chapter 6 The Quality of Dying and Death in Cancer

A version of this was previously published as:

Hales S, Chiu A, Husain A, Rydall A, Gagliese L, Zimmermann C, Rodin G. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manage. Published online before print 3 Apr 2013, DOI: 10.1016/j.jpainsymman.2013.12.240.

Dr. Hales was involved in study design and data collection, completed the data analysis and wrote the initial draft of this manuscript. Ms. Chiu was involved in study management and data collection. Dr. Rodin was involved in study design and data interpretation. Ms. Chiu, Dr. Husain, Ms. Rydall, Dr. Gagliese, Dr. Zimmermann and Dr. Rodin were involved in revising manuscript drafts. All approved of the final version.

6.1 ABSTRACT

Importance: While health care is increasingly focused on end of life care outcomes, relatively little attention has been paid to how the dying experience is subjectively evaluated by those involved in the process.

Objective: To assess the quality of dying and death of patients with cancer and examine its relationship to receipt of specialized palliative care and place of death.

Design: At 8 to 10 months following bereavement, caregivers of deceased cancer patients completed an interview retrospectively assessing quality of dying and death.

Setting: University-affiliated hospital and home palliative care program in downtown Toronto, Ontario, Canada. Inpatient, outpatient and home-based palliative care services were available through a universally-funded provincial health insurance program.

Participants: Bereaved caregivers of deceased patients with a diagnosis of metastatic cancer. Between September 2005 and July 2010, 916 eligible caregivers were contacted and 402 (43.9%) participated and are included in this analysis.

Main Outcome Measures: The Quality of Dying and Death (QODD) questionnaire which includes subscales evaluating symptom control, death preparation, connectedness with others, and transcendence over death-related concerns. Caregivers also provided information regarding palliative care services received and place of death, and completed questionnaires assessing bereavement distress.

Results: Overall quality of dying and death was rated “good” to “almost perfect” by 38.6%, and “neither good nor bad” by 61.2% of caregivers. The lowest QODD subscale scores assessed symptom control (rated “terrible” to “poor” by 14.9% of caregivers) and transcendence over death-related concerns (rated “terrible” to “poor” by 18.5% of caregivers). Multivariate analyses revealed that late or no specialized palliative care was associated with poorer death preparation and that home deaths were associated with better symptom control, death preparation, and overall quality of dying and death.

Conclusions and Relevance: The overall quality of dying and death was high for cancer patients in an urban setting where the majority received some specialized palliative care. It was highest for home deaths, although these may be associated with fewer complications or more supports. For a substantial minority of deaths, symptom control and death-related distress at the end of life were problematic, highlighting areas for intervention.

6.2 INTRODUCTION

Despite advances in treatment, cancer remains a leading cause of death worldwide, with 13.1 million cancer deaths expected to occur annually by 2030 (WHO, 2012). Although large studies in Canada and the United States have characterized cancer deaths in terms of numbers of symptoms, location and aggressiveness of care (Freeborne et al., 2000; Ho et al., 2011;), there has been comparatively little study of the dying and death experience from the perspective of those involved in the process (Goodman, 2011; Heyland et al., 2005). The predictable mortality associated with advanced cancer should allow for appropriate early interventions aimed at improving quality of death but research regarding this outcome has been lacking.

The quality of dying and death is a term that refers to the evaluation of the dying experience as a whole, according to one’s expectations and values (Stewart, 1999). This construct, which includes subjective evaluations of the physical and psychological experience, life closure and death preparation, the nature of health care, and the circumstances of death, is distinct from related constructs of quality of life and quality of care at the end of life (Hales et al., 2008). Validated measures of the quality of dying and death have been developed (Hales et al., 2010) and their application in advanced cancer populations may serve to enhance our understanding of the end stages of this illness.

Health care delivery factors, including specialized palliative care and location of end of life care, may influence the quality of dying and death. Early involvement of palliative care has been associated with better quality of life for patients with cancer (Temel et al., 2010; Zimmermann et al., 2012), less frequent use of chemotherapy in the last sixty days of life, and greater enrollment in hospice care (Greer et al., 2012). Similarly, death at home, where the majority of patients prefer to die (Higginson & Sen-Gupta, 2000), and where better quality of life can be maintained (Wright et al., 2010), or in a hospice/palliative care unit where the dying process is normalized and there is a focus on symptom management (Leung et al., 2010), may be associated with better evaluations of the dying experience than death in an acute care hospital.

The objectives of the present study were to assess, in an urban Canadian setting, the quality of dying and death of patients with advanced cancer and its relationship to length of specialized palliative care received and to place of death. We hypothesized that poorer quality of dying and death would be associated with receipt of late or no specialized palliative care and with death in hospital.

6.3 METHODS

6.3.1 Protocol and Recruitment

Deaths of metastatic cancer patients receiving health care in Toronto, Ontario, Canada, were identified in one of three ways: 1) between September 2005 and June 2010, by prospective tracking of deaths of patients enrolled in an observational study of distress and quality of life at The Princess Margaret Cancer Centre (PM), University Health Network (UHN) in Toronto (study protocol published elsewhere [Rodin et al., 2007]); 2) between February and September 2009, from retrospective lists of patients who died while receiving care from the Temmy Latner Centre for Palliative Care, a home palliative care program affiliated with Mount Sinai Hospital in Toronto; and 3) between July 2009 and July 2010, from retrospective lists of patients who died in one of the three UHN hospitals (The Princess Margaret, Toronto General Hospital, and Toronto Western Hospital). This sampling strategy allowed examination of a large number of cancer deaths in an urban setting where inpatient, outpatient and home-based palliative care services were available through a universally-funded provincial health insurance program. Study inclusion criteria were: a patient diagnosis of metastatic cancer and age greater than 18 years, and available contact information for the caregiver (identified by the patient prior to death, or listed as next-of-kin in their medical chart).

Six months after patient death, bereaved caregivers were contacted regarding participation in this study. This delay was necessary to avoid intrusion on caregivers during their initial grieving period and also due to the time required to obtain confirmation of patient death and locate caregivers with the prospective tracking method. Caregivers were excluded if they were younger than 18 years, unable to speak or read

English sufficiently to complete questionnaires, or were not with the patient during the last week of life. In-person or telephone interviews were scheduled for 8 to 10 months after patient death. The protocol was approved by the UHN Research Ethics Board and all participants provided informed consent.

A total of 1457 cancer patient deaths meeting eligibility criteria were identified; 406 (27.9%) caregivers were unreachable by mail and/or telephone, and 135 (9.3%) were excluded due to caregiver ineligibility (i.e. language barrier or insufficient knowledge of patient’s death). Of the 916 eligible caregivers reached, 457 (49.9%) consented to participate and 459 (50.1%) refused. Of the 457 who consented, 46 (10.1%) withdrew prior to completion of the interview. In addition, 9 (2.0%) deaths occurred in locations other than home, hospice/palliative care unit, or acute care hospital and were excluded from this analysis because the numbers were too small to analyze. This analysis is therefore based on a total of 402 patient deaths.

6.3.2 Measures

Patient variables (age, gender, cancer type, and illness length) were obtained via medical chart review. Caregiver variables (age, gender, place of birth, language, education, and the nature and length of the patient/caregiver relationship) and end of life care variables (duration and type of specialized palliative care received and place of death) were obtained via caregiver report. Patient and caregiver postal codes were used to estimate household income based on 2001 Statistics Canada census data. For the purpose of this analysis, late referral to palliative care was defined as within the last week of life (ASCO Quality Oncology Practice Initiative Summary of Measures, 2012).

Caregiver bereavement distress was measured with: The Texas Revised Inventory of Grief (TRIG) Part II (Faschingbaur et al., 1987) to assess present grief symptoms; the Impact of Event Scale-Revised (IES-R) (Weiss & Marmar, 1997) to assess stress- response symptoms; and the Beck Depression Inventory-II (BDI-II) (Beck et al., 1996) to assess depressive symptoms.

The quality of dying and death was measured with the Quality of Dying and Death (QODD) questionnaire (Curtis et al., 2002), the most widely used and best validated instrument to assess the quality of dying and death (Hales et al., 2010). This interview includes 31 items covering symptoms and personal care, treatment preferences, time with family, whole person concerns, preparation for death, and the moment of death. For each item, a quality score is obtained by asking respondents, “How would you rate this aspect of the patient’s dying experience?” on a scale from 0 to 10 (0 representing a terrible experience and 10 representing an almost perfect experience). The QODD developers have suggested (Downey et al., 2010) that attention be focused on four latent variables (based on 17 items reported to be medium and high end of life priorities): Symptom Control (i.e. pain control, control over what was going on, ability to breathe comfortably), Preparation (i.e. having means to hasten death if desired, visiting with spiritual advisor, having funeral arrangements in order, avoiding life support, having health care costs covered), Connectedness (i.e. sharing physical expressions of affection, spending time with family and friends), and Transcendence (i.e. feeling unafraid of dying, feeling at peace with dying, feeling untroubled about strain on loved ones).

6.3.3 Analysis

Descriptive statistics were calculated for all variables. t tests, analyses of variance, Pearson correlation coefficients or chi-square statistics were used as appropriate to examine associations between patient and caregiver variables and receipt of less than 1 week of specialized palliative care, place of death, and quality of dying and death scores. Multivariate linear regression was used to examine the simultaneous influence of multiple predictors of quality of dying and death scores. For each model, receipt of less than 1 week of specialized palliative care, place of death, and those potentially confounding variables associated with both independent and dependent variables (p<0.10) were entered and retained if significant (p<0.05) while controlling for other confounders. Variables not statistically significant in the final model were removed to conserve degrees of freedom. Interaction terms between significant variables were investigated (Cohen & Cohen, 2013). The relationships between quality of dying and death total and subscales scores and place of death were examined with one-way analysis

of covariance models, controlling for other predictive factors, and the results were graphed. Data were analyzed using the Statistical Package for the Social Sciences (SPSS), version 19.0.

6.4 RESULTS

6.4.1 Sample Characteristics

Table 6 summarizes patient and caregiver demographics, illness and care variables. The mean age of the patients at death was 66.9 (SD 14.2) years with a range from 23 to 96 years. The caregiver mean age was lower, at 56.9 (SD 13.0) years. Only 13.4% of the patients lived alone. Patients and caregivers were relatively affluent, with a mean yearly household income of $99,980.58 and $97,538.90 respectively. The caregiver sample was primarily English speaking (88.8%), Canadian-born (69.9%) and well educated, with 74% having some post-secondary education. Regarding bereavement distress, mean levels of caregiver grief, stress-response symptoms and depressive symptoms were in the low to moderate range.

6.4.2 Receipt of Specialized Palliative Care

Of the total sample, 73 patients (18.2%) received no specialized palliative care before death. Of the 329 patients who received specialized palliative care, 41 (12.5%) received it for less than 7 days before the end of life. Table 7 summarizes the sample characteristics and their relationship to receipt of specialized palliative care. Bivariate analysis revealed that receipt of late or no palliative care (i.e. 0-6 days) was associated with recruitment pool (i.e. oncology clinic, home palliative care service or hospital inpatient), lower patient income, less time from diagnosis to death, and non-home death (p<0.05).

6.4.3 Place of Death

Of the total sample, 129 (32.1%) patients died at home, 162 (40.3%) in an inpatient hospice/palliative care unit, and 111 (27.6%) in an acute care hospital setting. Table 7 summarizes the relationship of sample characteristics to place of death. Bivariate

analysis revealed that home death was associated with recruitment pool, greater patient age, greater patient yearly income, longer time from diagnosis to death, type of cancer, lower caregiver stress-response symptoms and more than 1 week of specialized palliative care ( p<0.05).

6.4.4 Quality of Dying and Death

The mean total QODD score was 65.3 (SD 12.7) with 38.6% of the sample scoring in the “good” to “almost perfect” range of the scale (i.e. 70-100) and 61.2% of the sample scoring in the “neither good nor bad” range of the scale (i.e. 30-70). The lowest subscale scores were Symptom Control (mean 54.4, SD 23.3), with 14.9% of the sample scoring in the “terrible” to “poor” range, and Transcendence (mean 54.2, SD 26.3), with 18.5% of the sample scoring in the “terrible” to “poor” range. Figure 3 illustrates the proportion of subscale and total scores falling into the poor, intermediate and good ranges of the scale.

Table 6 summarizes the relationship of sample characteristics to the quality of dying and death. Bivariate analysis revealed that better total QODD scores were associated with older patient age, older caregiver age, caregiver primary language English, greater length of relationship, less caregiver bereavement distress (i.e. grief, stress-response, and depressive symptoms) and home death ( p<0.05). Table 8 summarizes the multivariate regression parameters for the final models predicting QODD total and subscale scores. Late or no receipt of specialized palliative care was associated with worse Preparation but no other subscale scores and not the total QODD score ( p<0.05). As Figure 4 illustrates, controlling for confounding variables, home deaths were associated with better total QODD scores, better Symptom Control, and better Preparation scores than palliative care unit or acute-care hospital deaths ( p<0.05). As Figure 5 illustrates, there was a significant interaction between place of death and receipt of palliative care—surprisingly, home death with briefer palliative care was associated with better quality of dying and death than home death with longer palliative care involvement.

6.5 INTERPRETATION

This retrospective study of the quality of dying and death of cancer patients in a large Canadian urban setting, the first of its kind, found the majority of ratings to be highly favorable with a substantial minority of negative ratings for subscales assessing Symptom Control and Transcendence (14.9% and 18.5 % respectively). After controlling for potential confounding variables, the best overall quality of dying and death ratings were reported for deaths at home compared to non-home deaths with no significant difference between ratings of deaths in an inpatient hospice/palliative care unit and those in an acute care hospital.

Factors that might have contributed to these overall positive results include the study setting with availability of universally funded specialized palliative care, the relative affluence and education of the sample, and the presence of high social support (i.e. the majority of patients were not living alone). Bereavement distress was not high in caregivers, perhaps due to the length of time since bereavement and to the relatively high quality of the deaths. Nonetheless, fear of the dying process is common amongst those who face it (Steinhauser et al., 2000; Lo et al., 20110 and these findings may correct negative expectations and alleviate some of the anticipatory distress experienced by cancer patients and their families.

Our findings are consistent with other observations that a substantial minority of patients have distressing symptoms at the end of life (Laugsand et al., 2011; Meeussen et al., 2011). Less attention has been paid in previous research to the death-specific distress captured in the QODD Transcendence subscale, which asks about fear of dying, peace with dying, and worry about strain on loved ones. Our results underscore the need for further research into death-related distress and interventions that can target this issue prior to the end of life.

Late or no referral to palliative care was associated only with poorer Preparation subscale scores but, contrary to our hypothesis, not with worse overall quality of dying and death. This may indicate that excellent end of life care was provided by oncologists and/or

family doctors without referral to a designated palliative care service. It may also be the case that those with more distress and/or more complicated disease, are more likely to be referred to palliative care and perhaps to have worse subjective outcomes. This is supported by the apparently paradoxical finding that those dying at home with briefer palliative care involvement had better deaths than those dying at home with longer palliative care.

Previous research has emphasized that patients and families prefer death at home (Higginson & Sen-Gupta, 2000) but large studies in Ontario, North America and Europe (Gomes et al., 2010; Wilson et al., 2009; Cohen et al., 2010; Warren et al., 2011) have reported 30-85% of cancer deaths occur in hospitals, depending on study setting. In our study, approximately one third of these cancer deaths examined occurred at home, while 40.0% occurred in an inpatient hospice/palliative care unit/care facility and 28% in an acute care hospital, although conclusions cannot be drawn about cancer deaths in Toronto in general given our multiple recruitment strategies. Interesting, in our study, even among those patients followed by the home palliative care program, only 54% died at home. Home death in our study was associated with better overall quality of dying and death and better symptom control and death preparation than non-home death and there was no significant difference between death in an acute-care hospital and death in an inpatient hospice/palliative care unit/care facility. This suggests that even in an “ideal” environment such as urban Toronto, where funding and availability of home-based palliative care services would allow individuals with cancer the opportunity to die where they wish, those with difficult symptoms and without advance care planning might continue to die in institutional settings. Both cancer patients and families may benefit from the knowledge that, if not manageable at home, deaths in other locations can still be of good quality.

This study has several limitations. The recruitment of only approximately 30% of eligible caregivers, and the relatively urban, affluent and Canadian-born/non-immigrant nature of the sample may limit generalizability of these findings. The proportion of hospital deaths was lower than has been reported provincially and nationally in other

studies, although this would have been expected to contribute to worse overall quality of death and dying scores. The cross-sectional design of the study does not allow causal interpretations of the data. The quality of dying and death was assessed via retrospective bereaved caregiver report 8 to 10 months after patient death and it is possible that the emotional state, perspective, recall ability of the caregiver, and the duration of time between the patient death and the data collection influenced the results (Addington-Hall & McPherson, 2001), although retrospective examination of the very end of life is recognized as a necessary and valid methodology (Earle et al., 2006).

In conclusion, these overall positive findings regarding the quality of dying and death of patients with cancer may help to dispel myths about the cancer death experience across a range of settings. It is of concern that in a substantial minority of cases, symptom control and death-specific distress at the end of life are problematic. Further research is needed to understand better the factors that determine place of death, and how the nature of cancer care, the availability of palliative care services, and socioeconomic circumstances in other settings may affect the quality of dying and death.

Table 6. Sample characteristics and their relationship to total quality of dying and death (n=402 *). Total Sample (n=402) Relationship to QODD Characteristic n* % QODD r p† Mean Recruitment pool Oncology clinic outpatients 137 34.1 66.8 0.083 Hospital inpatients 119 29.6 63.3 Home palliative care service 146 36.3 65.5 Patient age at death in years Mean 66.9 0.120 0.016 SD 14.2 Patient gender Female 192 47.8 66.4 0.104 Male 210 52.2 64.3 Patient lived alone Yes 54 13.4 65.8 0.675 No 321 79.9 65.0 Unknown 27 6.7 67.1 Patient yearly income in dollars Mean 99,980.58 0.064 0.19 SD 72,663.72 Cancer site Gastrointestinal 285 70.9 64.7 0.403 Lung 65 16.1 66.6 Other 52 12.9 66.5 Time from diagnosis to death in months Mean 41.7 0.068 0.177 SD 59.0 Caregiver age in years Mean 56.9 0.206 <0.001 SD 13.0 Caregiver gender Female 286 71.1 64.9 0.354 Male 116 28.9 66.2 Caregiver yearly income in dollars Mean 97,538.90 0.012 0.744 SD 64,182.92 Caregiver country of birth Canada 281 69.9 65.3 0.915 Other 121 30.1 65.4 Caregiver primary language English 357 88.8 65.8 0.025 Other 45 11.2 61.3

Caregiver education < High School 104 26.0 66.3 0.359 > High School 298 74.0 65.0 Lived with patient Yes 268 33.3 65.5 0.695 No 134 66.7 64.9 Relationship to patient Spouse/common-law partner 229 54.5 65.2 0.593 Parent 12 3.0 70.1 Son/daughter 127 31.6 64.2 Sibling 18 4.5 67.5 Other family 11 2.7 68.0 Friend 15 3.7 66.3 Length of relationship to patient in years Mean 40.4 0.160 0.001 SD 14.4 TRIG (13-65) Mean 43.4 -0.17 0.001 SD 10.9 IES-R (0-4) Mean 0.91 -0.22 <0.001 SD 0.72 BDI-II (0-63) Mean 9.94 -0.24 <0.001 SD 8.31 Received specialized palliative care Yes 329 81.8 65.7 0.133 No 73 18.2 63.5 If received specialized palliative care, number of days 115.5 0.016 0.779 Mean 192.8 SD Received specialized palliative care < 1 week (0-6 days) 114 71.6 63.6 0.098 > 1 week (>7 days) 288 28.4 66.0 Place of death Home 129 32.1 68.8 <0.001 Inpatient hospice/palliative care unit 162 40.3 64.6 Hospital 111 27.6 62.2

* All variables are n=402 except: patient age (n=401); time from diagnosis to death (n=399); length of relationship to patient (n=401); TRIG (n=382); IES-R (n=382); BDI-II (n=382).

† p values refer to significance of t-test or ANOVA for categorical variables and of Pearson correlation coefficient ( r) for continuous variables.

Table 7. Sample characteristics by length of specialized palliative care involvement and place of death (n=402 *). Palliative Palliative Place of Death Place of Death Place of Death Characteristic Care Care p† Home Inpatient Hospital p† 0-6 Days > 7 Days (n=129) Palliative Care (n=111) (n=114) (n=288) Unit (n=162) Recruitment pool, no. (%) 35 (30.7) 102 (35.4) <0.001 50 (38.8) 59 (36.4) 28 (25.2) <0.001 Oncology clinic 67 (58.8) 52 (18.1) 0 (0.0) 63 (38.9) 56 (50.5) outpatients 12 (10.5) 134 (46.5) 79 (61.2) 40 (24.7) 27 (24.3) Hospital inpatients Home palliative care service Patient age at death in years 65.1 67.7 0.101 70.7 66.1 63.8 <0.001 Mean 13.4 14.4 13.8 14.2 13.9 SD Patient gender, no. (%) Female 51 (44.7) 141 (49.0) 0.445 64 (49.6) 75 (46.3) 53 (47.7) 0.854 Male 63 (55.3) 147 (51.0) 65 (50.4) 87 (53.7) 58 (52.3) Patient lived alone, no. (%) 12 (10.5) 42 (14.6) 0.407 19 (14.7) 23 (14.2) 12 (10.8) 0.848 Yes 96 (84.2) 225 (78.1) 103 (79.8) 127 (78.4) 93 (82.0) No 6 (5.3) 21 (7.3) 7 (5.4) 12 (7.4) 8 (7.2) Unknown Patient yearly income in dollars 0.045 Mean 85,629.92 104,265.2 0.002 110,571.70 97,708.44 87,366.44 SD 35,203.49 1 91,453.10 68,914.85 47,629.25

82,404.73 Cancer site, no. (%) Gastrointestinal 83 (72.8) 202 (70.1) 0.359 95 (73.6) 109 (67.3) 81 (73.0) 0.034 Lung 14 (12.3) 51 (17.7) 26 (20.2) 27 (16.7) 12 (10.8) Other 17 (14.9) 35 (12.2) 8 (6.2) 26 (16.0) 18 (16.2) Time from diagnosis to death in months Mean 30.3 46.2 0.003 54.9 38.3 31.4 0.015 SD 40.5 64.5 79.3 47.6 42.0 Caregiver age in years Mean 56.9 56.8 0.990 58.0 57.6 54.4 0.067 SD 13.9 12.7 12.2 13.6 12.9 Caregiver gender Female 82 (71.9) 204 (70.8) 0.827 100 (77.5) 112 (69.1) 74 (66.7) 0.138 Male 32 (28.1) 84 (29.2) 29 (22.5) 50 (30.9) 37 (33.3) Caregiver yearly income in dollars Mean 93,674.57 99,068.53 0.403 109,715.53 91,616.55 92,031.12 0.062 SD 53,862.34 67,861.61 76,893.30 52,965.01 61,441.75 Caregiver country of birth 78 (68.4) 203 (70.5) 0.684 89 (69.0) 119 (73.5) 73 (65.8) 0.382 Canada 36 (31.6) 85 (29.5) 40 (31.0) 43 (26.5) 38 (34.2) Other Caregiver primary language 104 (91.2) 253 (87.8) 0.333 116 (89.9) 145 (89.5) 96 (86.5) 0.656 English 10 (8.8) 35 (12.2) 13 (10.1) 17 (10.5) 15 (13.5) Other Caregiver education < High School 35 (30.7) 69 (24.0) 0.164 30 (23.3) 46 (28.4) 28 (25.2) 0.600 > High School 79 (69.3) 219 (76.0) 99 (76.7) 116 (71.6) 83 (74.8)

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Lived with patient Yes 80 (70.2) 188 (65.3) 0.348 87 (67.4) 105 (64.8) 76 (68.5) 0.800 No 34 (29.8) 100 (34.7) 42 (32.6) 57 (35.2) 35 (31.5) Relationship to patient Spouse/common-law 67 (58.8) 152 (52.8) 0.126 66 (51.2) 93 (57.4) 60 (54.1) 0.313 Parent 1 (0.9) 11 (3.8) 3 (2.3) 6 (3.7) 3 (2.7) Son/daughter 31 (27.2) 96 (33.3) 50 (38.8) 41 (25.3) 36 (32.4) Sibling 9 (7.9) 9 (3.1) 5 (3.9) 7 (4.3) 6 (5.4) Other family 2 (1.8) 9 (3.1) 4 (3.1) 5 (3.1) 2 (1.8) Friend 4 (3.5) 11 (2.7) 1 (0.8) 10 (6.2) 4 (3.6) Length of relationship to patient in years Mean 40.9 40.2 0.668 42.7 39.8 38.7 0.084 SD 14.9 14.3 14.1 14.8 14.1 TRIG (13-65) Mean 44.1 43.1 0.404 41.9 43.7 44.6 0.148 SD 10.6 11.1 11.5 10.8 10.2 IES-R (0-4) Mean 1.2 1.1 0.200 0.9 1.1 1.2 0.020 SD 0.7 0.7 0.7 0.7 0.7 BDI-II (0-63) Mean 10.0 9.9 0.882 9.4 10.2 10.2 0.673 SD 8.0 8.4 8.8 8.4 7.6 Total QODD (0-100) Mean 63.6 66.0 0.098 68.8 64.6 62.2 <0.001 SD 14.1 12.1 12.4 11.5 13.9 Symptom Control (0- 100) 52.0 55.4 0.216 59.4 53.5 50.0 0.007 Mean 26.0 22.1 22.1 23.0 24.4 SD

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Preparation (0-100) Mean 73.1 77.9 0.004 79.1 77.4 72.3 0.004 SD 16.3 14.2 13.9 13.9 16.9 Connectedness (0-100) Mean 82.0 81.3 0.710 80.7 83.1 80.2 0.267 SD 16.5 15.6 14.8 15.6 17.1 Transcendence (0-100) Mean 53.3 54.5 0.693 57.6 53.0 51.8 0.192 SD 26.5 26.2 26.1 26.2 26.5

* All variables are n=402 except: patient age (n=401); time from diagnosis to death (n=399); length of relationship to patient (n=401); TRIG (n=382); IES-R (n=382); BDI-II (n=382); Connectedness (n=401); Transcendence (n=400). † p values refer to significance of t-test, ANOVA or chi-square test.

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Table 8. Multivariate regression parameters for final models predicting quality of dying and death total and subscale scores.

Dependent Independent Unstandardized SE Standardized F p Variable Variable coefficients coefficients Beta Beta Symptom Caregiver 0.030 0.009 0.168 11.611 0.001 Control age Subscale * IES-R -0.634 0.164 -0.193 15.024 <0.001 Home death 0.571 0.250 0.114 5.229 0.023

Preparation IES-R -0.270 0.105 -0.130 6.661 0.010 Subscale † Greater than 0.590 0.184 0.180 10.297 0.001 1 week of palliative care Home death 1.517 0.480 0.477 10.008 0.002

Interaction -1.502 0.510 -0.461 8.668 0.003 between home death and greater than 1 week of palliative care Connectedness ------Subscale ‡ Transcendence Caregiver 0.044 0.010 0.217 18.933 <0.001 Subscale § age IES-R -0.505 0.185 -0.136 7.421 0.007 Total QODD ¶ Caregiver 0.172 0.047 0.176 13.352 <0.001 age IES-R -3.442 0.867 -0.193 15.749 <0.001 Home death 14.869 3.983 0.547 13.935 <0.001

Interaction -12.443 4.235 -0.447 8.633 0.004 between home death and greater than 1 week of palliative care

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Greater than 2.293 1.521 0.082 2.272 0.133 1 week of palliative care

* Adjusted R square=0.079, F(3,378)=11.844, p<0.001. † Adjusted R square=0.058, F (4, 377)=6.812, p<0.001. ‡ No model significant. § Adjusted R square= 0.061, F (2, 377)=13.251, p<0.001. ¶ Adjusted R square=0.117, F(5,376)=11.139, p<0.001.

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Terrible to Poor (0-29) Intermediate (30-70) Good to Almost Perfect (70-100)

100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0%

e D Frequency of Quality of Death Scores DeathScores of Quality Frequencyof ion D at denc O edness Q ect al tom Control p Prepar Tot Conn Transcen Sym

Figure 2. QODD subscale and total QODD score frequencies.

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Home Death Non-Home Death

100 p=0.002 p 90 =0.47 p<0.001 80

70 p=0.02 p=0.22 60

Mean Quality Scores Death of Quality Mean 20

Figure 3. QODD subscales and total QODD scores by place of death. Means are adjusted for confounding variables identified in regression analyses (Symptom Control adjusted for caregiver age and IES-R; Preparation adjusted IES-R, greater than 1 week of palliative care and the interaction between home death and greater than 1 week of palliative care; Transcendence adjusted for caregiver age and IES-R; and Total QODD adjusted for caregiver age, IES-R, greater than 1 week of palliative care and the interaction between home death and greater than 1 week of palliative care). Error bars represent 95% confidence intervals. P values refer to significance of the effect of place of death on patients’ quality of dying and death from analysis of variance models.

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Home Death Non-Home Death

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30 Mean Quality Mean Quality Death Scores of

0 Less Than 1 Week Palliative Care 1 Week or More of Palliative Care

Figure 4. Total QODD scores by palliative care received and place of death. Means are adjusted for caregiver age and IES-R. In the analysis of variance model, the interaction between receipt of palliative care and place of death was significant (F(1,376)=8.633, p=0.004). Error bars represent 95% confidence intervals.

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Chapter 7 General Discussion 7.1 The Quality of Dying and Death Construct and its Measurement

This project began with an aim to clarify and delineate the quality of dying and death construct within medical research, and in doing so, highlighted its complexities as a construct that is both multidimensional and subjectively determined. While seven broad domains of the dying experience were consistently noted by patients, family members, health care providers and others (i.e. physical experience, psychological experience, social experience, spiritual/existential experience, the nature of health care, life closure and death preparation, and the circumstances of death), there was overlap and interrelationship among these domains. It was also notable that opinions about dying and death are likely shaped in complex ways by individual, social and contextual factors and may vary across the trajectory of disease.

The breadth of the quality of dying and death construct challenges the more narrow approach of traditional medicine which tends to be focused on the disease, symptoms and the body. Suffering within the non-physical dimensions of experience may not be recognized or impacted upon easily by health care providers and there has been debate about whether spiritual/existential distress, for instance, should be considered the responsibility of those in the medical field (Teno et al., 2001). It also has been suggested that ambiguity regarding the medical responsibility for these domains can contribute to “existential uncertainty” within health care and a retreat to the traditional medical model which focuses on physical care and medical responses to suffering and death (McNamara, 2004). To address the lack of guidance in this area, we need to understand better, and continue to develop the measurement of the social, spiritual/existential, and life closure and death preparation domains of the dying and death experience. Until we measure these constructs in a consistent manner and understand their clinical relevance, health care provision is in danger of remaining focused primarily on physical symptomatology.

Given that the “good” death is subjectively determined, attempts to ascertain the objective “truth” of the end-of-life experience may be futile. We must instead acknowledge and accept the subjectivity inherent in all accounts, whether provided by patients, family or health care

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providers, and determine how to make use of these multiple subjective perspectives. As with the widening of the health care perspective from a more narrow focus on disease to the whole person, so attention beyond the patient to the family and larger circle of care, can complicate health care provision but also provide an opportunity to more fully positively impact the lives of those affected by life-threatening disease. These perspectives may then be combined with more “objective” data (e.g. symptom frequency, advance care planning, types of health care received) to provide a comprehensive picture of the end-of-life experience.

Following the examination of the quality of dying and death construct as represented in the literature, a review of measurement approaches was conducted. While it was clear that measurement strategies are becoming more rigorous over time, of the 18 measures reviewed, few (i.e. 7) were accompanied by an explicit definition of the quality of dying and death upon which they were based; even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The QODD was the most widely studied, validated and reliable measure available. Since completion of that review, although the QODD continues to be employed in the most frequently published research (Smith et al., 2011; Gerritsen et al., 2013), other measures continue to be used (Leung et al., 2010; Shin et al., 2011). This multiplicity of strategies may prevent comparison among patient populations and health care settings. At the same time, these different measurement approaches each provide one perspective or lens through which to view important aspects of the death experience. As this field grows, a number of well- validated and reliable measures that capture the dying and death experience will likely be developed. Future reviewers may be able to guide researchers by outlining which measures should be selected depending on the study context and design.

The results of the quality of dying and death literature review highlighted that the quality of dying and death, like other concepts such as health and quality of life (Allison et al., 1997), is a social construction that is constantly being created and contested on a variety of levels. Both commonality and diversity of opinion on the nature of a good death were identified in the conceptualization and measurement studies reviewed and this justifies caution regarding the assumption that there is a singular good death. A focus on an acceptable if not ideal death may have the advantage of being a less prescriptive and more modest framework for end of life care.

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It is clear that this area of research continues to evolve and these findings will not be the last word in conceptualizing and measuring this construct.

Most measures that have been developed to assess the dying experience rely on after-death assessments, often from caregivers or heath care providers. It has been argued that variability in evaluations, whether due to differences in frame of reference, emotional state, access to the patient’s experience, and/or conceptualization of quality of death, threaten the meaningfulness of studies using these measures. To understand better the potential sources of response variation and therefore increase the interpretability of quality of dying and death measures, the cognitive processes underlying evaluations with the QODD in a convenience subsample of 22 bereaved caregivers were explored with a cognitive interview protocol and subsequent qualitative content analysis of transcribed interviews. This is the first study of its kind to use cognitive interviewing methodology to evaluate a measure of the quality of dying and death. The results revealed that respondents were often basing their ratings on multiple perspectives (i.e. patient, caregiver, other family/friends) which reflects the reality that family caregivers are participant-observers in the dying experience and may be highly involved and also recipients of end-of-life care. In judging the quality of dying and death with the QODD, caregivers used multiple comparative judgment strategies (i.e. comparison standards including most commonly “a hoped for or ideal dying experience”, “a state before the dying phase”, “a state of distress/no distress,” or “normalcy/humanness”). The multiplicity of approaches used to answer QODD items could be regarded as a threat to the reliability and validity of the QODD and justify amendment of the QODD to insure more uniform responses. As in the field of quality of life research where multidimensionality and subjectivity of evaluations are acknowledged, I have argued that these differences (i.e. patient and family values, expectations, and interpretations of past death experiences) could be seen as potential targets for clinical intervention. For example, frank and open communication with patients and families that explores their death-related anxieties, corrects negative assumptions, and aids preparation for end of life, could potentially impact how dying and death is later evaluated by those involved.

The cognitive interviewing study highlights some weaknesses with respect to the QODD measure, particularly the fact that the majority of respondents identified response difficulties with the questionnaire. This was most often because they had not communicated with the patient

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about the issue addressed by the question, they deemed the question not relevant/applicable, or the question wording and meaning were not clear. In a recent paper, the QODD developers (Curtis et al., 2013) have summarized some of the problems they have identified with this measure from the over 4,000 deaths evaluated with the QODD and they note similar weaknesses. They mention as problematic the finding that some QODD items are less likely to be answered, that the measure does not capture the values upon which respondents are basing ratings nor does it allow for weighting of items. While they conclude that, at present, the QODD may not be suitable for use as an outcome measure in intervention studies and that refinement and research are needed to strengthen the interpretability of the QODD, they point out that this is not dissimilar to the long testing process that was required for quality of life measures such as the Short Form-36 (SF-36) (McHorney et al., 1993) which are now standard intervention study outcome measures. I have also argued that the QODD, and quality of dying and death measures in general, are on a development path similar to that of quality of life measures. Both development processes involve capturing concepts that are highly subjective and multidimensional and therefore psychometrically complex. The importance of being able to quantify and report on these experiences, however, is essential to provision of meaningful health care and should not be abandoned.

7.2 The Quality of Dying and Death in Cancer

This is the first study to use a validated and reliable measure of quality of dying and death that allows comprehensive evaluation in a large sample of cancer patients. Despite prevailing attitudes that dying from a terminal illness such as cancer is a highly negative event with necessary suffering and loss of dignity (Hendry et al., 2012), the overall quality ratings of the deaths in this sample were moderately high. This may be attributable to the uniqueness of this study setting, in which patients and families had access to quality palliative care services, and/or to sample characteristics including high socioeconomic status, high education level and high proportion of the sample that spoke English, and high levels of social support. It is also possible that positive evaluations were a result of the fact that the respondents were bereaved family members. It is possible for instance that there was a response bias with bereaved caregivers who had a better experience being more likely to participate in this study. It is also possible that creation of a retrospective narrative of the dying and death process is part of bereavement coping

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and that family caregivers generally tend to tell a positive story as a means to reduce grief and death-related distress.

Interestingly, most observational research using measures of quality of dying and death, as outlined in our review of quality of dying and death measures (Chapter 4), found positive results. Of the 20 studies I reviewed that provided a summary score for the quality of dying and death, 19 of these, using 11 different measures, reported the mean quality of dying and death to be in the intermediate to good range or found the majority of sample scores to be in this range. It is interesting that these reviewed studies did not rely solely on family member respondents but also relied on health care provider respondents and also considered different disease populations. The only study of the 20 which did not find intermediate to positive ratings, was based on an adaptation of two quality of life measures. It could be argued therefore that the researchers were capturing quality of life at the end of life rather than quality of dying and death per se.

In a recent study conducted in the Netherlands, Gerritsen et al. (2013) used the QODD to evaluate patient deaths occurring in ICUs with family member, physician and nurse respondents. They found overall very high QODD ratings with a median score of 9 out of 10 (equivalent to 90 with the method we used for QODD calculation). The authors suggest this high rating, higher than those seen in previous QODD studies, might be due to standard practices in the Netherlands insuring caregiver involvement in ICU care, the high recruitment rate of 89% of eligible family members, Dutch cultural expectations regarding dying and death, and the large percentage of patients transitioned to comfort measures rather than active full support. Further use of this measure to examine deaths in a variety of settings will help to clarify whether positive results can be explained by study settings, the bereavement process, and/or the nature of retrospective health care evaluations.

Of the QODD subscales, in our study the lowest average scores were found for the subscales assessing symptom control and death-related distress (e.g. fear of dying and peace with dying). While it is well recognized that the physical aspects of dying and death need attention, this highlights the importance of addressing the existential and death preparation aspects of the end- of-life process. This may be via preparing patients and families for the specifics of the dying process and providing supportive and open communication regarding their dying-related fears. This is an area currently without a clear evidence-base for clinical practice.

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Despite our hypothesis that palliative care would be associated with better quality of dying and death, this was found only for the subscale assessing death preparation. As with place of death, there are numerous factors that could obscure observational associations including greater symptomatology and complicated disease course in the group receiving palliative care. Research that has failed to find a positive association between palliative care services and better quality at the end-of-life may be explained by similar associations. Ultimately a randomized controlled trial would be a better study design to detect any potential relationship between receipt of palliative care and quality at the end of life (Zimmermann et al., 2008).

In terms of the importance of place of death in relationship to the quality of end-of-life, our findings indicated that home death led to better outcomes than deaths in other locations. It is important to note that the observational study design precludes concluding a causal relationship between place of death and quality of dying and death. There are many aspects of the illness experience of patients able to die at home that are different from those who die in hospital or hospice and could also account for these findings, most notably, symptomatology (those with less complicated or difficult symptom management are more often able to die at home), resources (those with more financial and social supports are more likely to be able to die at home), and better death preparation (those with more awareness or acceptance of end-of-life may be more able to do the advance care planning required to ensure death at home). There continues to be emphasis on facilitating home deaths, given patient and family preference and the relatively lower cost of care in the home (Higginson & Sen-Gupta, 2000), and yet research such as ours continues to find that the majority of deaths, even in settings with good quality home care, are occurring in institutions. While differences in quality of dying and death by location are significant, they are small and institutional deaths can still be of high quality.

7.3 Limitations

There are limitations to the research approaches employed for this project. Perhaps most importantly, this study relied on the retrospective evaluation of the end-of-life by bereaved caregivers. As mentioned, bereaved caregiver reports have been criticized for numerous reasons, including: subjective state at the time of the event and recall, their own individual experiences, the time from event to recall, motivation, (Addington-Hall & McPherson, 2001) and the ability to take another’s perspective into account. In addition, proxies may have difficulty rating aspects

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of dying not easily observable such as spiritual or existential experience, aspects of life closure and death preparation. This project refutes some of the criticisms of after-death bereaved caregiver report and supports others. Interestingly, in our cognitive interviewing study, despite probing about the reasons for response difficulties, no caregiver stated that inability to remember details of the time period in question was a cause for their response difficulties. The cognitive interviewing study did however confirm that caregivers are not consistently referencing patient experiences and often use their own experiences and/or those of other family and friends to inform their quality ratings. In addition caregivers reported more response difficulties regarding items asking about non-observable aspects of patient experience. Regarding the influence of subjective state, the larger study examining quality of dying and death in cancer revealed that bereavement distress, specifically depressive symptoms, stress-response symptoms, and grief symptoms were significantly associated with worse quality of dying and death scores although the correlations were not strong (r values ranged from -0.17 to -0.24). In summary, bereaved caregivers, when asked to evaluate end of life, likely are influenced somewhat by their own experiences and their subjective state. While this should be taken into account in interpreting results using this methodology, it does not follow that these findings are without meaning. As previously stated, by definition the quality of dying and death is subjective and therefore likely influenced by emotions, values, thoughts and beliefs. In addition, the end-of-life is experienced by and involves both the patient and their larger circle of care. Distinguishing amongst and parsing out these perspectives may not be possible for respondents. Reliance on one’s subjectivity, and referencing multiple perspectives, might be similarly seen if patients were the end-of-life informants. Instead of dismissing proxy reports we could consider complimenting these findings with other data, such as reports from other informants, in an effort to triangulate information resulting in a more complete picture of the end-of-life experience.

Patient participation in end-of-life research has many challenges including prospective identification of patients in the dying phase, progressive cognitive and physical impairment, the need for participants to be aware of the terminality of their disease and their willingness to discuss death-related issues. As well, the fact that death defines the preceding days and weeks as the dying phase may demand that evaluation of this phase is captured retrospectively. Finally bereaved caregivers may be an important subject group in their own right given that they are often co-recipients of palliative care, are decision-makers as patients become incapable, and

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clinically may potentially bear the morbidity of subsequent bereavement distress. In my review, all of the medical research attempting to capture quality of dying and death relied on retrospective evaluations from non-patient respondents. This methodology is therefore necessary for comprehensively exploring the very end-of-life, if not without its challenges and drawbacks.

Finally, the recruitment rate of 30% of potential bereaved caregivers in the study of quality of dying and death in cancer is low. One barrier to recruitment was ability to reach the caregiver via telephone to invite their participation. Of those caregivers reached, 49.9% consented. It is possible that in some cases unanswered telephone calls and voicemail messages were passive expressions of lack of interest in this study. The overall recruitment rate of 30% is not inconsistent with studies relying on similar methodology. In our review of the measurement literature, in those studies that reported recruitment data, the proportion of family members approached who consented to these studies ranged from 27 to 57%. Unfortunately we were not able to collect any information about the majority of caregivers who did not respond to our request to participate in the study and thus were prevented from exploring any systematic differences in responders versus non-responders. There are likely numerous factors involved in refusal to participate, not the least of which is the anticipation of distress during the process of recounting details of their loved one’s death and reluctance to revisit painful memories. This is an important and yet perhaps unavoidable potential recruitment bias in research reliant on bereaved caregivers that nonetheless may threaten the external validity of these findings.

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Chapter 8 Conclusions

The following is a summary of the main conclusions and research implications from this project:

1) Quality of dying and death is a complex construct based on multiple perspectives and standards of comparison. Clinical care, if it aspires to improve how dying and death is evaluated, must ensure the family is the unit of care and aid in preparation for the dying and death experience. 2) Quality of death evaluations were not, overall, in the poor range with possible explanations for this including: high rates of palliative care received; recruitment/response bias; family caregiver proxies overestimating quality of experience; recollection of events altered by caregivers’ need to perceive the end of life as positive. 3) The quality of dying and death domains of symptom control and transcendence (i.e. fear of dying, lack of peace with dying) were the domains with the most room for improvement. 4) Better quality of death evaluations were associated with death at home. Home death is most strongly related to domains of symptom control and death preparation. Statistically significant but small differences may be reassuring to patients and families who cannot avoid institutional deaths.

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Chapter 9 Future Directions

Future use of the QODD in end of life research will continue to inform its interpretability. Much remains to be explored regarding the quality of dying and death in cancer. For instance, further understanding of the influence of patient factors (i.e. individual psychology, gender, socioeconomic status, education, religion, culture, etc.), resource availability, disease and health care factors on dying and death could be studied. Our research team is analyzing a subsample of the deaths included in this project for which we have pre-morbid data including information on pre-death patient and caregiver distress. We are also analyzing a subsample to examine whether other health care factors such as aggressive care at the end-of-life (i.e. chemotherapy at the end of life, intensive care unit admissions) or absence of advance care planning (i.e. no “do not resuscitate” orders or end of life discussions with the health care team) could negatively influence quality of dying and death.

Our research team has two partnerships that will examine the influence of health care context and culture on quality of dying and death. In partnership with the Southwest Community Care Access Centre of Ontario, research is being completed examining the quality of dying and death in cancer patients residing in a less urban setting. In partnership with Kensington Gardens and Kensington Hospice in Toronto, we have begun to examine quality of dying and death in nursing home and hospice settings. In partnership with researchers in Israel, research has recently been completed examining cancer patient deaths in a more culturally and religiously homogenous environment for comparison with our Toronto sample.

As outlined previously, in order to determine whether palliative care can impact quality of dying and death, a randomized controlled trial would be the ideal study design. As part of a randomized controlled trial of an early palliative care intervention at PM, Dr. Camilla Zimmermann has begun using the QODD interview with bereaved caregivers after patient death to determine if this outcome is influenced by early palliative care. It remains unclear what the clinically meaningful benchmarks may be when using the QODD measure to guide clinical care

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and this type of study will help to clarify the extent to which the QODD can to be impacted upon by palliative care interventions.

Finally this study has highlighted the potentially problematic area of the death-related distress faced by cancer patients and their families. End-of-life care has been focused on more easily measured aspects such as physical symptomatology, nature of care and location of death. Death- related distress is not well understood and approaches to ease this distress need to be developed. Dr. Gary Rodin, Dr. Christopher Lo and I have developed Managing Cancer and Living Meaningfully (CALM), a brief psychotherapeutic intervention for advanced cancer patients which aims to treat distress associated with awareness of mortality. This has been partly informed by this quality of dying and death research. Specifically, our understanding that multiple perspectives are involved in the dying experience has led to an emphasis on the family’s experience of the end-of-life and inclusion of caregivers in the psychotherapeutic process. Our understanding that values, past experiences and expectations influence quality of dying and death judgments has led to emphasis on a deeper psychodynamic understanding of the patient, in depth exploration of the meaning of their illness experience, and exploration of their death-related fears and anxieties. It is possible that similar interventions could be developed for caregivers to assist them with navigating and managing the end-of-life of their loved one and help them cope with their own death-related distress and anticipatory grief. Development of a psychotherapeutic intervention for caregivers is currently underway.

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