Florida State University Libraries
Electronic Theses, Treatises and Dissertations The Graduate School
2009 The Rewards and Challenges of Hospice Work Gina D. Carreno-Lukasik
Follow this and additional works at the FSU Digital Library. For more information, please contact [email protected] FLORIDA STATE UNIVERSITY
COLLEGE OF SOCIAL SCIENCES
THE REWARDS AND CHALLENGES OF HOSPICE WORK
By
GINA D. CARRENO-LUKASIK
A Dissertation submitted to the Department of Sociology in partial fulfillment of the requirements for the degree of Doctor of Philosophy
Degree Awarded: Summer Semester, 2009 The members of the Committee approve the Dissertation of Gina D. Carreno-Lukasik defended on April 17, 2009.
______Jill Quadagno Professor Directing Dissertation
______Charles Barrilleaux Outside Committee Member
______Jim Orcutt Committee Member
______Irene Padavic Committee Member
Approved:
______Irene Padavic, Chair, Department of Sociology
______David Rasmussen, Dean, College of Social Sciences
The Graduate School has verified and approved the above named committee members.
ii
For Al
iii ACKNOWLEDGMENTS
First, I must thank my committee chair, Jill Quadagno, for her dedication and encouragement throughout this whole process. Jill, I can‘t thank you enough for being willing to step in years ago as my major professor when circumstances shockingly turned tragic. You always have shown me compassion, sensitivity, and support. You have inspired me to not only strive to be a better sociologist but also a better human being. I also thank Patricia Yancey Martin for her shining example of what a true scholar should be œ perseverant, dedicated to social justice, and constantly striving for excellence. Pat, I have become a stronger researcher because of your example. Thank you so very much to the members of my committee for their patience, understanding, and support throughout this process. Thank you to Jim Orcutt for your wonderful balance between professionalism and approachability. I will never forget our research seminar during which you handed me the gavel for editing skills. That makes me smile to this day! Thank you especially to Irene Padavic for being willing to come in to this committee at this stage of the process. I have always considered you a role model for how to be not only an accomplished sociologist but also a strong, independent, activist woman. You have truly influenced my values and thinking during these years. Thank you to Charles Barrilleaux, my outside committee member, for your interest in my topic and belief in my ability to see this project through. I truly appreciate your willingness to be a part of this committee amidst all your other responsibilities. I also wish to thank Jamie Yeargan for helping me through the nuts and bolts of this sometimes-confusing process. Your guidance (and friendly reminders!) have helped keep me on track when I felt like I was about to fall off. Thank you especially to all the hospice workers who kindly took time out of their beyond-busy lives to sit down and talk with me for this study. Words cannot express how much I truly appreciate your willingness to share your experiences and feelings with me. I have learned so much about hospice and about life from each and every one of you. I wish you all the very best in all you do. Thank you to all my colleagues and friends with whom I have collaborated and celebrated throughout these years. You know who you are. I could never have made it through this process without you. An especially big thank-you hug goes to Chris, my
iv honorary sister. I am lucky to have met you in college, and I am so glad that our friendship has only grown stronger throughout all these years. None of this would have been possible without the endless love, support, and encouragement of my parents. Mom and dad, words can never express how much I love you. I am constantly reminded of how blessed I am that you are my parents. Thank you so very much for always being there for me and believing in me. I also thank my chosen family. Thank you so very much to Greg Lukasik œ my husband, partner, confidant. I feel blessed that I met you in graduate school, and I am grateful for how our friendship grew into something even more special and long-lasting. Thank you so much for your endless support, encouragement, humor, and love. Thank you also to Kitty, who always has given me unconditional love. I know your life before we met was heartbreakingly difficult. Thank you for trusting me and allowing me into your heart, because you certainly got into mine. And finally, thank you to my daughter. I love you so much already, and I can‘t wait to meet you in a few months. I will do everything I can to fill your life with joy, laughter, and love. I love you, baby. Finally, thank you to Allen Imershein œ professor, mentor, cherished friend. I am who I am today in large part because I was so truly blessed to have known you. The one dark spot in this moment is that you are not here to share it with me. All of us who knew you loved you and still do. You will live forever in our hearts. I dedicate this dissertation to you. I hope it makes you proud.
v TABLE OF CONTENTS
Abstract ix
1. INTRODUCTION 1 Why Study Hospice? 1 Personal Motivation 1 Sociological Motivation 2 Contributions of This Study 4 Contributions to Sociology 4 Contributions to Hospice 5 Overview of Dissertation Chapters 5
2. BACKGROUND: THEORY AND RESEARCH 7 Stress in Paid Work 7 Role Conflict 7 Typologies of Role Conflict 8 Consequences of Role Conflict 9 Coping Strategies 9 Hospice Work 12 Hospice: Past and Present 12 Stress in Hospice Work 14 Conclusion 17
3. RESEARCH DESIGN AND METHODOLOGY 19 Data Collection 19 Participants, Recruitment, and Confidentiality 19 Table 3.1 Descriptive Information on Participants 21 Interview Questions 22 Data Analysis 22
4. CONFLICTS BETWEEN WORKER AND CLIENTS 25 Death is Taboo in the U.S. 25 Consequences of Death as Taboo 26 Clients‘ Denial about Impending Death 26 Clients —Protecting“ Each Other 27 Clients‘ Lack of Knowledge about Dying and Grieving 31 Clients‘ Desire for Curative Treatments 33 Coping Strategies 34 Educating Clients 34 —You Go to Hospice to Die“ 38 Consequences of Misconception 39 Hospice Too Late 39 Self-Fulfilling Prophecy 42 —No Morphine“: Fears of Euthanasia 42 —Give Her the Shot“: Requests for Euthanasia 44
vi Coping Strategies 48 Educating Clients 48 Acquiescing to Clients 53 Looking the Other Way 57 Other Possible Sources of Conflict 59 Culture and Religion 59 Mental Condition of Patient 62 Coping Strategies 63 Remembering —It‘s Not about Me, It‘s about Them“ 63 Conclusion 65
5. HOSPICE BECOMING MORE LIKE A BUSINESS 67 Expansion 67 Quantitative Role Overload 68 Qualitative Role Overload 73 Hospice Work in Different Settings 76 Coping Strategies 89 Sacrificing Time with Clients 89 Abandoning Professional Socialization Activities 92 Engaging in Impression Management 94 Division of Labor 99 Alienation of Worker from Hospice Process 100 Role Ambiguity among Team Members 102 Irrational Consequences for Clients 106 Coping Strategies 109 Keeping Lines of Communication Open 109 Remembering —It‘s Not about Me; It‘s about Them“ 112 Cost Containment 114 Internal Cost Control 115 External Cost Control 116 Threat to Worker-Client Relationship 117 Increased Need for Documentation 119 No Curative Treatment versus Open-Access 120 Prioritizing —Medical“ Care over —Non-Medical“ Care 123 Coping Strategies 128 Accepting Begrudgingly 128 Decoupling from Management 128 Educating Team Members 131 Educating Clients 134 Using Clients‘ Lack of Knowledge to Your Advantage 135 Remembering —It‘s Not about Me; Its about Them“ 135 Conclusion 136
6. Discussion and Conclusions 139 My Other Findings 141 Research Limitations 150
vii Contributions and Suggestions for Future Research 151
APPENDICES 158
A. HUMAN SUBJECTS APPROVAL 158
B. INFORMED CONSENT FORM 160
C. RECRUITMENT FLYER 162
D. RECRUITMENT LETTER 163
E. INTERVIEW QUESTIONS 164
BIBLIOGRAPHY 166
BIOGRAPHICAL SKETCH 178
viii ABSTRACT
Based on 31 interviews with workers (ten nurses, six social workers, seven music therapists, three integrative therapists, one chaplain, one certified nursing assistant, and three bereavement counselors) from a large, non-profit hospice organization in the southeastern U.S., this dissertation examines the challenges that arise in hospice work. Hospice‘s provision of end-of-life care is becoming even more important as our population lives longer. My analysis reveals some of the challenges that hospice workers face in a continuously changing health care system. First, conflicts may arise between workers and their clients. One source of conflict between workers and their clients is that the subject of death is considered taboo in U.S. culture. This causes patients and families to be in denial of the impending death, to be uninformed about and therefore unprepared for the processes of dying and grieving, and to push for curative treatments, which is antithetical to hospice philosophy. My participants attempt to cope with these challenges by educating their clients. A second source of conflict between workers and their clients is that the public incorrectly believes that hospice is a place one goes to die. This causes patients and families to enroll in hospice too late, to be suspicious of or even reject palliative medications such as morphine, and to request euthanasia, which is antithetical to this hospice‘s policies as well as against the law. My participants attempt to cope with these challenges by educating their clients, acquiescing to their clients, or looking the other way. A third source of conflict between workers and their clients is when differences arise due to culture, religion, or the unpredictability of a patient‘s mental condition. My participants attempt to cope with these challenges by setting aside their own opinions and serving their clients with as little judgment as possible. My analysis also reveals that workers face many challenges due to hospice becoming more like a business. This hospice organization‘s attempts to expand its client base has resulted in my participants experiencing quantitative as well as qualitative role overload and adjusting to work in different settings. My participants attempt to cope with these challenges by sacrificing time with clients, abandoning professional socialization activities, and engaging in impression management. This hospice organization‘s division of labor has resulted in my participants feeling alienated from the hospice process, experiencing role overlap in the Interdisciplinary Team, and being frustrated with the
ix irrational consequences for their clients. My participants attempt to cope with these challenges by communicating openly with their clients and with each other as well as setting aside their own feelings and opinions. Finally, this hospice organization‘s focus on cost containment has resulted in threatening the worker-client relationship as well as increasing workers‘ load with the need for more documentation. Workers also point to the blurry line between care versus cure and complain of the prioritization of —medical“ over —non-medical“ care. My participants attempt to cope with these challenges by accepting their work conditions begrudgingly, decoupling themselves and their work from management, educating their clients as well as each other, using clients‘ lack of knowledge to their advantage, and setting aside their own feelings and opinions. My analysis contributes to the exploration of stressors in paid work in general and in hospice in particular.
x CHAPTER 1 INTRODUCTION
Why Study Hospice? Personal Motivation This dissertation has been years in the making. I have found myself bouncing from topic to topic all in the field of medical sociology, and I finally settled on hospice for primarily personal reasons. I, like many others, have had the sad experience of having cherished friends pass away. Although my friends‘ stories are all different œ diverse illnesses, different lengths of time of being sick œ what they have in common is that each of them, in their final days of this life, received hospice services. After each of my friends passed, their surviving loved ones told me of the beautiful and crucial work that hospice workers did in making the last moments of my friends‘ lives as comfortable and as fulfilling as possible. Before my friends‘ passing I had heard of hospice, and I often heard people refer to hospice workers as —angels.“ Hearing the words of my friends‘ loved ones made me even more curious about these workers. What draws a person to work in hospice, an environment that, at least in my view, could be terribly sad and emotionally draining? What do hospice workers find rewarding about their job? I also wondered about the challenges of working in hospice. How do hospice workers protect themselves emotionally while also being there emotionally for dying patients and their grieving families? What other kinds of challenges arise in this line of work, and how do workers try to cope with these difficulties? This study reports findings from my in-depth interviews with 31 hospice workers (ten nurses, six social workers, seven music therapists, three integrative therapists, one chaplain, one certified nursing assistant, and three bereavement counselors) in a large, non-profit hospice organization in the southeastern U.S. My interviews focused on their experiences working in hospice. I asked them why they chose a career in hospice, and what they enjoy about their work. I also asked them about how they deal emotionally with this line of work. The heart of the interviews dealt with the challenges of working in hospice and how they try to manage these difficulties.
1 Sociological Motivation Although my interest in hospice stemmed primarily from personal reasons, there are also many reasons from a sociological point of view why researching challenges and conflicts in hospice work is important. In this section first I start broadly by addressing why studying role conflict in paid work is important. Second, I explain my rationale for using hospice workers as a case study. Although definitions for the concept of —role conflict“ vary, most researchers agree that, in the broadest sense, role conflict refers to incompatible / contradictory demands or expectations (Kahn et al. 1964; Katz and Kahn 1978; Rizzo et al.1970; Siegall and Cummings 1995; Tracy 2004). Recent studies show that role conflict in organizations is not only common; it is inevitable (El-Sawad et al. 2004; Maze 2005; Redman and Hill 1997; Shead 1991; Tracy 2004; Trethewey and Ashcraft 2004; Valentine et al.1998). Why study role conflict in paid work? While early research focused on consistency and rationality within organizations, more recent studies find that inconsistency, irrationality, dilemmas, paradoxes, and contradictions are not only common but inevitable in organizations (El-Sawad et al. 2004; Maze 2005; Redman and Hill 1997; Shead 1991; Tracy 2004; Trethewey and Ashcraft 2004; Valentine et al.1998). Some researchers suggest that, rather than assuming the existence of role conflict and workers‘ recognition of it, studies should focus on how workers perceive and frame conflict. For example, El-Sawad and colleagues (2004) conducted unstructured interviews with employees of a U.K. multinational blue-chip corporation. Their analysis of employees‘ career accounts revealed that most of the interviewees did not recognize contradictions they offered in their answers. Other studies also have highlighted the differences between objective role conflict and workers‘ subjective experience of role conflict (Berger-Gross and Kraut 1984; Kahn 1974; Siegall and Cummings 1995; Stryker and Macke 1978). In cases where workers recognize role conflict, studies should explore sources of conflict as well as the strategies workers use to deal with these contradictions. While numerous studies highlight sources of conflict, fewer studies have focused on employees‘ coping strategies, also referred to as coping behaviors, coping techniques, conflict
2 management styles, and conflict resolution (Bacharach et al. 1990; Siegall and Cummings 1995; Tracy 2004; Trethewey and Ashcraft 2004). This lack of attention to coping strategies is a limitation because the effects of role conflict on individual workers, their organizations, and potentially their clients are mediated by workers‘ coping strategies. In other words, role conflict in itself is not necessarily positive or negative; the outcomes depend on how workers deal with conflict (Antonioni 1996; Dijkstra et al. 2005; Siegall and Cummings 1995; Stryker and Macke 1978; Tracy 2004; Trethewey and Ashcraft 2004; Tubre and Collins 2000; Yang and Mossholder 2004). Why use hospice workers as a case study? Studies have explored role conflict in paid work in a variety of settings, including correctional institutions (Tracy 2004), multinational corporations (El-Sawad et al. 2004), special employment programs (Rosen 1970), public sector engineering (Bacharach et al. 1990), mental health care (Bower et al. 2004; Francis 2000), and midwifery (Hunter 2005, 2004). I have chosen to study role conflicts of hospice workers for a number of reasons. First, I feel that studies of role conflict in paid work should focus on where many workers currently work. Recent years have shown a dramatic increase in jobs in the service sector (Soderfeldt et al. 1996). Human service organizations (HSOs), which work directly with the people they (the organizations) are supposed to protect or enhance (Schneider 1980; Soderfeldt et al. 1996), are now one of the most common forms of paid employment. Hospice is the quintessential HSO because it fully meets the criteria put forth by Hasenfield and English (1974). HSOs are premised on a moral doctrine of human welfare. There is often a gap between the organization‘s official goals (public statements) versus operative goals (actual practices). Since the work objects of HSOs are human beings, sometimes it is hard for workers to know what actions to take. It is also difficult to measure outcomes in human service organizations. Finally, the core work of HSOs is the relationship between the worker and client. As a result, complications may arise because the interests of each party may be incompatible. Since hospice meets all of these criteria, making it a perfect place to explore role conflict. Second, hospice is relevant not only from an employment perspective, but also from a service perspective. In other words, hospice is not only a source of jobs, but also it serves increasing numbers of individuals in the population, in the U.S. as well as in
3 other countries (National Hospice and Palliative Care Organization 2008). As the population continues to grow and live longer, end-of-life issues will become increasingly more important. More individuals will find themselves being served by hospice programs. Since studies show that role conflict not only affects workers and their organizations but clients as well, we can assume that patients also will be affected by hospice workers‘ experiences of role conflict. Third, and perhaps most important, studies show that hospice work in particular is dilemmatic in nature. In other words, hospice is ripe for role conflict. Conflicts in hospice may arise from workers caring for patients in the face of organizational constraints (James 1992), workers performing their tasks in various settings, including in- patient facilities, hospitals, nursing homes, and patients‘ homes (Gray-Toft and Anderson 1986-87; Hospice Management Advisor 2002, 2004; Munley et al. 1982; Parham 2002), workers having to balance between connecting emotionally with patients versus maintaining emotional distance to remain objective and able to cope with the patient‘s inevitable death (Gray-Toft and Anderson 1986; Mesler 1995; Rahman 2000; Ward and Gordon 2006), workers having to balance caring for patients with government rules due to reimbursement (Dahlin 1999; Mesler and Miller 1996; Miller and Mike 1995; Monahan 2003; Ward and Gordon 2006), workers participating in an interdisciplinary hospice team (IDT) (James 1992; Rahman 2000; Reese and Sontag 2001), and workers balancing between potentially contradictory values within the hospice philosophy itself (Campbell et al. 1995; Csikai 2004; Mesler and Miller 2000; Mesler 1995). Studies indicate a need for more research into sources of conflict for hospice workers as well as how they manage these conflicts.
Contributions of This Study Contributions to Sociology While offering important insights, sociological studies of role conflict suffer from limitations, some of which I mentioned previously. First, organizational studies originally emphasized consistency and rationality, whereas we now know that organizations are rife with inconsistency and irrationality. Future studies should emphasize that conflict is inevitable and therefore worth exploring.
4 Second, many studies have used surveys to quantitatively analyze causes and effects of role conflict (Antonioni 1996; Bacharach et al. 1990; Beauchamp et al. 2002; Dijkstra et al. 2005; Jackson and Schuler 1985; Siegall and Cummings 1995; Tubre and Collins 2000). However, qualitative studies using in-depth interviews may offer richer data on how workers recognize, frame, and attempt to cope with role conflict. As stated previously, researchers have called for more inquiry into employees‘ coping behaviors because workers‘ conflict management styles mediate the effects of role conflict on the worker, her/his organization, and the client. Third, researchers point out that few studies have explored role conflicts associated with hospice work (Csikai 2004). Because people in the U.S. are living longer, increasing numbers of people may turn to hospice as part of their end-of-life care. A study of the challenges of hospice work is not only timely, but it also contributes to sociology‘s exploration of occupations and organizations, as well as how workers find meaning in their work. Contributions to Hospice The lack of attention to the challenges of hospice work not only is a limitation of sociological inquiry, but also it poses potential problems for the practice of health care. Since research finds that hospice work is dilemmatic in nature, perhaps research can help hospice workers deal with these challenges and hence provide better care for their clients (patients and families). Indeed, some researchers have pointed to the need for educational and training programs for health care practitioners dealing with dilemmas that may arise in hospice work (Csikai and Raymer 2005; Csikai 1999).
Overview of Dissertation Chapters This dissertation is organized as follows. Chapter 2 reviews research on stress in paid work, focusing especially on typologies of role conflict, consequences of role conflict, and coping strategies workers use to manage role conflict. In that chapter I also provide an overview of how hospice works, as well as conflicts that may arise in this job. I describe the methods used to collect and analyze my data for this study in Chapter 3. Chapters 4 and 5 focus on two major challenges for hospice workers that arose from my interviews. In chapter 4 I discuss some conflicts that arise between workers‘ and their
5 clients. Chapter 5 explores how hospice is becoming more like a business, and the challenges that transition poses to hospice workers. Finally, in Chapter 6 I acknowledge the limitations of my research design and suggest directions for future research.
6 CHAPTER 2 BACKGROUND: THEORY AND RESEARCH
To reiterate, my study explores the rewards and challenges of hospice work, focusing especially on the conflicts that may arise in this job. In this chapter first I review the literature on stress in paid work, focusing on role conflict. Next I describe the history of hospice as well as how it currently works in the U.S. Finally I highlight studies that have explored conflicts that hospice workers in particular may encounter.
Stress in Paid Work Studies of paid work indicate three main sources of job stress: role overload, role ambiguity, and role conflict. First, role overload refers to too many work demands within too little time to complete those demands (Bacharach et al. 1990; Rizzo et al. 1970). Workers experiencing role overload often feel that the quantity of their work forces them to sacrifice the quality of their work (Kahn 1974). According to Gomme and Hall (1995), role overload can be either quantitative or qualitative. Quantitative role overload occurs when workers have too little time to complete their tasks because of the number of tasks. Workers experience qualitative role overload when workers have too little time to complete their work because of the complexity of tasks. Second, workers experience role ambiguity when behavioral expectations for a role are unclear (Antonioni 1996; Beauchamp et al 2002; Katz and Kahn 1978; Olk and Friedlander 1992; Tubre and Collins 2000). Role conflict The third source of job stress is role conflict: —the simultaneous occurrence of two or more sets of pressures, such that compliance with one would make compliance with the other more difficult“ (Kahn et al. 1964 and Katz and Kahn 1978 cited in Bacharach, Bamberger, and Conley 1990: 201). Studies estimate management spends about 20 percent of its time addressing conflict (Valentine 2001). Because conflict management by organizations is costly in terms of time as well as money, more studies are needed on sources of conflict as well as how workers attempt to cope (Valentine et al. 1998).
7 In the 1930s researchers argued that conflict disrupted the normal functioning of organizations. Conflict was viewed as dysfunctional and hence something to be avoided or eradicated. Despite this negative view of conflict, some researchers started to explore the positive effects of conflict. The sociological macro-level approach viewed conflict as inevitable in organizations due to the malfunctioning of workers. This approach maintained that conflict could be dealt with by identifying its sources and then fixing the workers and situations involved (Almost 2006; Stryker and Macke 1978). With the rise of the social-psychological micro-level (interactionist) approach, the view shifted to conflicts within and between people. Researchers saw conflict as having both positive and negative outcomes. Moderate amounts of conflict were the most productive, with extremely high or low amounts of conflict being least productive or being problematic. The past twenty years have furthered this view, acknowledging both the positive and negative effects of conflict. However, recent studies emphasize that the effects depend in part on how workers attempt to cope (Almost 2006; Djikstra et al. 2005; Stryker and Macke 1978; Tracy 2004). Typologies of role conflict. While researchers have offered several typologies of role conflict, most organizational research relies on a typology of role conflict developed by Kahn et al. (1964) and Katz and Kahn (1978). This typology led to the most widely used measure of role conflict in organizational research, the role conflict instrument of Rizzo, House and Lirtzman (1970). According to Kahn et al. (1964) and Katz and Kahn (1978), there are four types of role conflict. Intrasender role conflict is when one role sender imposes contradictory expectations on the worker. Intersender role conflict is when two more role senders impose contradictory expectations on the worker. Person- role conflict is when the worker‘s expectations about his/her role differ from the expectations of the role senders. Interrole conflict is when the demands of one role interfere with the demands of another role (Siegall and Cummings 1995). Organizational studies use various typologies of role conflict, but most are identical (just phrased differently) or highly similar to Kahn‘s (1964) and Katz and Kahn‘s (1978) framework. In other words, much conceptual overlap exists (Almost 2006; Dirks and Parks 2003). Studies using Kahn‘s (1964) and Katz and Kahn‘s (1978) framework or a modification of it include Rosen‘s (1970) study of the foreman
8 (intrasender, intersender, interrole conflict), El-Sawad et al.‘s (2004) study of workers in a U.K. blue-chip corporation (official organizational policy versus practice, contradictory accounts of workers, and —doublethink,“ the worker‘s obliviousness to contradiction), Cushnie‘s (1988) study of health care (intrapersonal, interpersonal, intragroup, intergroup conflict), and Almost‘s (2006) literature search covering 25 years of nursing conflict (relationship, task, and process conflict). Consequences of role conflict. As stated previously, role conflict is important because it affects multiple parties, including the individual (worker), organization (workplace), and possibly the client. While recent studies acknowledge that outcomes can be positive as well as negative, most research emphasizes conflict‘s negative effects. Studies show that job stress, especially role conflict, has negative effects on workers‘ physical and mental well-being. Role conflict often leads to irritability, depression, headaches, high blood pressure, heart palpitations, anxiety, emotional exhaustion, and insomnia (Antonioni 1996; Djikstra et al. 2005; Gomme and Hall 1995; Kemery et al. 1987; Siegall and Cummings 1995; Soderfeldt et al. 1996). When a worker‘s physical and mental health are impaired, his/her ability and/or desire to work may suffer. Studies show role conflict is linked to higher absenteeism, poorer job performance, lower job satisfaction, higher burnout, and intent to leave the job. These outcomes affect the organization/workplace and potentially the clients as well, since the worker‘s effectiveness on the job is impaired (Djikstra et al. 2005; Fisher and Gitelson 1983; Forte 1997; Siegall and Cummings 1995; Stryker and Macke 1978; Tracy 2004). While most studies emphasize the negative effects of role conflict on the worker, organization, and client, a few researchers acknowledge the potentially functional outcomes of conflict. Role conflict may offer the opportunity for creativity, self- reflection, reevaluation of situations, and positive organizational change (Putnam 1986; Smyth 1985; Tracy 2004). Coping strategies. As stated previously, recent studies call for more exploration of how workers attempt to cope with role conflict because these strategies can mediate the effects of role conflict. Researchers have found numerous coping strategies workers use to address role conflict. Just as with typologies of role conflict, there is much conceptual overlap between coping behaviors. For example, according to Goffman (1961
9 and 1959), workers may acknowledge they are putting on a front for the sake of the job. Workers also may engage in compartmentalization (selectively respond to demands) and role-distancing (perform role without taking responsibility for it). Blake and Mouton (1964) were the first researchers to develop a grid that distinguished between workers‘ —concern for production“ versus —concern for people“ in choosing coping strategies. Other studies have renamed these orientations —concern for self“ versus —concern for other“ (Rahim and Bonoma 1979 cited in Almost 2006). Blake and Mouton‘s grid includes five coping strategies œ forcing, sharing, withdrawing, problem solving, and smoothing. Rosen (1970) found that foremen facing conflicts engaged in innovation (developed unique solutions to problems), denial or repression (pretended that problems did not exist), displacement (became angry at someone else rather than at the source of the problem), evasion (avoided difficulties instead of addressing them), choice between pressures (acted upon strongest pressure), and compartmentalization (separated norms and rules of the job from those of non-work life). The conceptual overlap between coping strategies becomes more evident in literature reviews on this subject. Stryker and Macke‘s (1978) literature review finds that workers deal with contradictions by ignoring roles (do not fulfill the demands of one of the contradictory roles), prioritizing roles (perform both roles, but place more value and time on one of them), redefining roles (perform both roles, but reframe them in way they do not appear contradictory), and negotiating roles (delegate the performance of some roles to other individuals). The literature search by Siegall and Cummings (1995) highlights coping behaviors just explained and also adds role negotiation (try to modify the required behaviors of the role) and general withdrawal as discussed by Parsons (1951), Kahn et al. (1964), and Merton (1968), when the worker decreases his/her communication with the role senders. In addition to organizational and sociological research, studies in communication have focused on how individuals deal with contradictions (Tracy 2004). Dialectical theory finds that individuals can select one role to be dominant, separate roles by attending selectively to them, neutralize contradictions by using small talk, and reframe roles so they are no longer perceived to be contradictory. Family systems theory finds that individuals fail to cope successfully with conflicts, often exhibiting paranoia, lack of
10 complex thinking, and general withdrawal from the situation (Tracy 2004). Again, the conceptual overlap between coping behaviors is evident, with organizational, sociological, and communications research all finding similar and at times identical techniques. Early research on role conflict viewed organizational tensions as inherently problematic and in need of elimination. However, recent studies maintain that conflict itself is not necessarily positive or negative, but rather the effects of role conflict are mediated by workers‘ coping behaviors. Organizational literature highlights two general types of coping œ problem-oriented and palliative (also referred to as emotion-oriented). Problem-oriented coping focuses on the source of the conflict, whereas palliative coping is directed at the worker‘s emotional response to the conflict. Studies indicate that problem-oriented coping is usually more effective in mediating the effects of role conflict than palliative coping, hence problem-oriented coping is referred to as —adaptive coping“ and palliative coping is referred to as —maladaptive coping“ (Siegall and Cummings 1995). Research finds workers use both successful adaptive coping and unsuccessful maladaptive coping. One study (Djikstra et al. 2005) of workers in a health care facility for disabled individuals found that nurses and staff engaged in —flight behavior“ including watching television and drinking alcohol. This behavior led to increased organizational stress and decreased individual well-being. Tracy (2004) examined how officers in two correctional facilities attempted to cope with conflicts at work. Her study found that the effects of role conflict depended on how workers framed these organizational tensions. Some workers framed conflicts as a contradiction, in which two roles cannot be performed at once, so the worker must alternate or choose one. Framing tensions as a contradiction had no negative impact on the worker but proved negative for the organization, since alternating or choosing which role to perform made the organization appear random and unstable. Some workers framed conflicts as a complementary dialectic, in which the roles were reframed to appear compatible. Framing tensions as a complementary dialectic increased workers‘ satisfaction and allowed them to attend to different organizational responsibilities simultaneously. Finally, some workers framed the conflicts as a paradox or double bind, in which the roles are viewed as a no-win
11 situation. Framing tensions as paradoxical negatively affected the workers and the organization, because workers became paralyzed and unable to deal with the conflict. Now that I have reviewed research on conflict in paid work in general, I turn to describing the subject of my particular study, hospice. First I offer an overview of hospice, from its origins to present practice. Next I review research that explores potential stressors in hospice work.
Hospice Work Hospice: Past and Present According to the Hospice Foundation of America (2009), —The word ”hospice‘ stems from the Latin word ”hospitium‘ meaning guesthouse. It was originally used to describe a place of shelter for weary and sick travelers returning from religious pilgrimages.“ In 1967 British physician Dame Cicely Saunders became the founder of the modern hospice movement when she established St. Christopher‘s Hospice near London, which offered specialized comfort care for the dying. St. Christopher‘s used an interdisciplinary team approach to provide holistic, compassionate care for both the patient and his/her family. After the patient died, the family was offered bereavement care as well (Abendroth 2005; Bradshaw 1996; Monahan 2003; National Hospice and Palliative Care Organization 2008). The modern hospice movement began to spill to the U.S. when in 1963 Dr. Saunders spoke at Yale University to doctors, nurses, social workers, and chaplains. She served as a faculty member in the Yale School of Nursing starting in 1965, and the first U.S. hospice was established in New Haven, Connecticut in 1974. In 1982 Congress passed the Tax Equity and Fiscal Responsibility Act, which created a Medicare Hospice Benefit. In 1986 Congress made this benefit permanent. In addition to Medicare, hospice services are also covered by a Medicaid Hospice Benefit and also by most private insurers (Abendroth 2005; Miller and Mike 1995; Mesler and Miller 1996; Monahan 2003; NHPCO 2008; Ward and Gordon 2006). Hospice is best described not as a place but rather as a philosophy of care for individuals whose terminal illness no longer responds to curative treatments. The focus in hospice is on comfort care rather than cure. Hospice serves in a variety of settings,
12 including hospice organizations‘ inpatient units, hospital wards, skilled nursing facilities (i.e., nursing homes), and assisted living facilities, but most patients receive hospice care in their own homes. Hospice develops an individualized plan of care for each patient and family, which is implemented by an Interdisciplinary Team trained in managing physical symptoms and pain as well as providing emotional and spiritual support to patients and their families (Beresford 1993; Hospice Foundation of America 2009; NHPCO 2008). The hospice philosophy involves several core ideas. First, hospice provides care when a patient‘s life expectancy is six months or less, and his/her terminal illness no longer responds to cure-oriented treatments. Second, hospice care neither hastens nor prolongs death. Third, hospice strives to make an individual‘s remaining days as comfortable and as dignified as possible. Patient autonomy is at the heart of hospice philosophy, that the patient ultimately has control over his/her dying process. Fourth, a family member is typically the patient‘s primary caregiver, with hospice care being provided by an Interdisciplinary Team. This team usually consists of the patient‘s personal physician, hospice physician, nurses, home health aides, social workers, clergy or other spiritual counselors, bereavement counselors, and possibly therapists if deemed necessary. Fifth, hospice deals with all symptoms of the patient‘s illness, focusing especially on pain management. Sixth, hospice addresses the patient‘s and family‘s physical, emotional, social, and spiritual needs. Seventh, hospice services should be affordable and available. Last, hospice offers counseling and bereavement services to family before and after the patient‘s death (Abendroth 2005; Beresford 1993; Hospice Foundation of America 2009; Monahan 2003, Mesler 1994; NHPCO 2008). According to the National Hospice and Palliative Care Organization, today in the U.S. there are around 4,700 hospice programs. As of 2007, 48.6% were not-for-profit and 47.1% were for-profit. Although there are more not-for-profit programs, statistics show growth in the for-profit sector. In 2007 approximately 1.4 million patients received hospice services: 930,000 patients died with hospice care (38.8% of all deaths), 258,000 patients were still on the hospice census at the end of 2007, and 222,000 patients were discharged alive from hospice because of —extended prognosis, desire for curative treatment, and other reasons.“ In 2007, cancer comprised 41.3% of hospice admissions. The top five chronic illnesses served by hospice included heart disease (11.8%),
13 diagnosis unspecified (11.2%), dementia (10.1%), and lung disease (7.9%). Women comprised 53.9% of hospice patients whereas men comprised 46.1%. In terms of race, Caucasians comprised 81.3% of hospice patients; Black/African American 9.0%; Multiracial or Other Race 7.8%; Asian, Hawaiian, or Other Pacific Islander 1.6%; and American Indian or Alaska Native 0.3%. In terms of ethnicity, Non-Hispanics/Latinos comprised 94.9% of hospice patients, with Hispanics/Latinos 5.1%. The total number of days a patient receives hospice services is referred to as length of service or length of stay. In 2007 the median length of stay was 20 days. As stated previously, hospice serves in a variety of settings, with the majority of patients (70.3%) receiving care in their own homes. Four out of five hospice patients are 65 years of age or older, with more than one-third of all hospice patients 85 years of age or older. As people continue to live longer, the NHPCO anticipates that patients 65 and older will grow (NHPCO 2008). Now that I have given an overview of the inception of hospice to how it works today in the U.S., I turn to studies that explore potential stressors in hospice work. Stress in Hospice Work Studies reveal that hospice workers encounter many challenges in their line of work. Initially studies explored the emotional challenge of working with dying patients and their grieving families. However, Vachon (1978, 1979, 1987,1995) finds that stress often stems from organizational factors rather than individual/personal factors. For example, her studies find that role ambiguity, i.e., workers being unsure about what exactly their professional role entails, causes more stress than does the emotional strain of working with dying patients and grieving families. Other studies corroborate her findings, that organizational factors contribute to worker stress. Studies find that, in addition to the emotional strain of working with the dying and grieving, hospice workers‘ stress often results from working in different settings, having to balance caring for patients with government rules due to reimbursement, participating in an Interdisciplinary Team, and balancing between contradictions within the hospice philosophy itself. Although organizational factors contribute to worker stress, studies also find workers feel strained emotionally from working with dying patients and grieving families. Not surprisingly studies find that hospice work is emotionally challenging, because workers serve dying patients and their grieving families. On one hand many
14 workers become emotionally close and attached to patients and families. Workers may find this emotional closeness part of the reward of working in hospice. Emotional closeness also shows patients and families that workers are empathic to their situation (Gray-Toft and Anderson 1986; Mesler 1995; Ward and Gordon 2006). However, some workers try to balance between getting close versus maintaining a distance from patients and families. Workers see this boundary maintenance as not only necessary for serving patients and families, but also for their own self-preservation (Ward and Gordon 2006). Studies find that hospice workers‘ stress often results from working in different settings. As explained previously, hospice workers provide services in patients‘ private homes, inpatient units, hospital wards, skilled nursing facilities (i.e., nursing homes), and assisted living facilities. For example, while an inpatient unit is a controlled environment, the dynamics of patients‘ private residences can prove unpredictable (Mesler 1995). Furthermore, conflicts may arise when hospice workers serve clients in nursing homes, which have their own unique organizational rules; that is, nursing homes have their own admission procedures. Hospice workers point out that nursing home staff often consider the nursing home their territory, and that hospice workers may be viewed as encroaching upon that turf (Gray-Toft and Anderson 1986-87; Hospice Management Advisor 2002 and 2004; Munley et al. 1982; Parham 2002). Worker stress also results from balancing caring for patients with government rules due to reimbursement. Mesler and Miller (1996) point out that while reimbursement from Medicare and Medicaid increases the visibility of hospice and makes it accessible regardless of someone‘s (in)ability to pay, there are consequences of federal involvement. Government reimbursement contributes to hospices operating more like a business, and that involves hospice becoming more bureaucratized. Part of that routinization involves hospice organizations trying to increase their census (i.e., patients being served). Workers serve increasing numbers of patients, resulting in less time for patients and less time for workers to engage in self-care. Many workers feel that management does not appreciate their increased workloads (DiTullio and MacDonald 1999; Mesler 1995). Government reimbursement also introduces issues of cost control. Hospice workers manage patients‘ symptoms, especially pain, with medications. Now workers must consider what the government will and will not cover financially (Dahlin
15 1999; Mesler and Miller 1996; Miller and Mike 1995; Monahan 2003; Ward and Gordon 2006). Participating in an Interdisciplinary Team also poses challenges for hospice workers. As explained previously, hospice provides holistic care for patients and their families through the collaboration of physicians, nurses, social workers, home health aides, chaplains/spiritual care counselors, therapists, and volunteers. Some studies find highly successful collaboration among members of hospice teams (Oliver et al. 2006; Parker-Oliver et al. 2005). However, other studies find that workers in an Interdisciplinary Team often hold different worldviews, theoretical perspectives, goals, and professional values due to self-selection (why they chose their particular profession), education (how were they trained in their particular profession), and rewards (how are they rewarded by their profession) (Connor et al. 2002; Garman et al. 2006; Hall 2005; McCallin 2001; Reese and Sontag 2001). For example, nurses focus on medical issues, social workers on psychosocial, and chaplains on spiritual (Oliver and Peck 2006; Payne 2004). Members of an Interdisciplinary Team may also lack knowledge about their coworkers‘ professions and hence doubt their expertise (Reese and Sontag 2001). Conflicts also arise from overlap between workers‘ roles, such as when nurses address a patient‘s psychosocial needs. Studies refer to this overlap as role ambiguity and role blurring (Kulys and Davis 1987; MacDonald 1991; Reese and Sontag 2001; Rahman 2000). Finally, Reese and Sontag (2001) point out that some hospice team members may not share equally in the team‘s work, and that differences in the statuses of professions also may lead to conflicts. Hospice workers may experience stress from balancing between contradictions within the hospice philosophy itself. One potential contradiction in the hospice philosophy is that in hospice, the client or unit of care is both the patient and the family. However, studies find families are rife with conflict (King and Quill 2006). Some family members are in denial about their loved one‘s impending death (Csikai 2004). Some family members refuse to follow hospice workers‘ instructions regarding the patient‘s care (Kirk 2007). At times a patient and his/her family disagree on important matters, such as discontinuing treatments (Erlen 2005). An often hidden or overlooked dynamic is abusive family relationships (Fisher 2003).
16 In addition to serving both patient and family, another potential contradiction within the hospice philosophy stems from the issue of euthanasia, specifically, physician assisted suicide. According to the Committee on Physician-Assisted Death of the American Association of Suicidology (1996: 6), —assisted suicide“ refers to —the deliberate and knowing provision of information, the means, and/or help to another person for an act of suicide.“ —Physician assisted suicide“ refers to a medical practitioner giving a patient the means to kill her/himself œ such as a prescription or lethal injection œ but the patient ultimately must perform the act him/herself (Humphry and Clement 1998; Manetta and Wells 2001; Quill, Lo, and Brock 1997). Studies reveal potentially conflicting principles within the hospice philosophy itself that emerge with the issue of PAS, creating an —inherent dilemma“ for hospice workers (Mesler and Miller 2000). Three examples of potentially contradictory principles within the hospice philosophy include patient autonomy versus sanctity of life, involving the patient‘s family versus honoring patient confidentiality, and collaborating with hospice team members versus honoring patient confidentiality. First is patient autonomy versus sanctity of life. Hospice philosophy empowers patients and families to make their own decisions and control their own dying and grieving processes. However, hospice will do nothing to neither postpone nor hasten someone‘s death. If a patient and/or family requests euthanasia, it highlights the potential contradiction between honoring their autonomy versus not accelerating the death. Second is involving the patient‘s family versus honoring patient confidentiality. Hospice serves both patient and family. However, if a patient requests euthanasia but does not want his/her family to know, then that poses a challenge for the hospice worker, who is supposed to involve both parties. Third is collaborating with hospice team members versus honoring patient confidentiality. If a patient requests euthanasia and wants that request to remain private, then that poses a challenge for the hospice worker, who works within an Interdisciplinary Team when caring for that patient.
Conclusion In this chapter I have reviewed the literature on stress in paid work, focusing on role conflict. I have described the history of hospice as well as how it currently works in
17 the U.S. Finally I highlighted studies that have explored conflicts that hospice workers in particular may encounter. In sum, recent studies call for more exploration into not only sources of role conflict in paid work, but also into the ways workers attempt to cope with these organizational tensions. More research on coping strategies is needed because conflict management styles influence how role conflict affects the worker, organization, and perhaps client as well. Because hospice work in particular is dilemmatic in nature, studies should explore the challenges facing these workers. While many studies point to sources of conflicts in hospice work, few studies have explored how hospice workers interpret these challenges and attempt to manage them. As the U.S. population ages and more patients and families turn to hospice for end-of-life care, it will become more important to understand how hospice workers understand and deal with these dilemmas.
18 CHAPTER 3 RESEARCH DESIGN AND METHODOLOGY
In this chapter I describe the methods I used to collect and analyze data for my study. The data come from interviews with 31 hospice workers at a large, non-profit hospice organization in the southeastern U.S. For purposes of confidentiality I refer to this organization as Crossings Hospice. In the section Data Collection, I explain how I gained access to these hospice workers and how I conducted these interviews, including location, length, and topics discussed. In the section Data Analysis, I explain how I analyzed my interview data using grounded theory and the constant comparative method.
Data Collection Participants, Recruitment, and Confidentiality The participants in my study are 31 hospice workers at a large, not-for-profit hospice organization in the southeastern U.S. I gained access to my participants through convenience sampling as well as snowball sampling. I selected Crossings Hospice (pseudonym) because of its convenient location, large size (covers an entire county and employs over 1000 workers), length of service (has cared for patients and families for over 30 years) and its not-for-profit status. I first called Crossings Hospice in March 2008 and explained to the receptionist that I was a sociology graduate student hoping to interview hospice workers for my dissertation. After a moment of thought the receptionist transferred me to Crossings Hospice‘s Director of Education. After she and I spoke about my research topic, the rewards and challenges of hospice work, and my methodology, interviewing hospice workers about their job experiences, the Director of Education invited me to meet with her in person to further discuss my research project. When she and I met the following week in her private office at Crossings Hospice, we spoke for roughly two hours about my proposed study. As I was leaving she indicated she would grant approval for my study from Crossings Hospice. (At this time I also applied for and received the following month Human Subjects approval from my university, see appendix). Crossings Hospice‘s Director of Education also offered to help me recruit hospice workers to interview. I emailed her my recruitment flyer, letter, and
19 Informed Consent Form (appendix), which she distributed to Team Supervisors and Patient Care Managers, who passed along to their employees and staff. After one or two employees contacted me expressing cautious interest in the study, I distributed a more detailed email outlining some of the interview topics. Hospice workers began contacting me via email and phone about setting up an interview. We met at a location and time suggested by the participant; interviews took place in either a private room at one of Crossings Hospice‘s facilities, at the participant‘s private residence, or a public location (such as a coffee shop, park, etc.). Prior to each interview I gave the participant a copy of and explained the Informed Consent Form. I reviewed with each participant the goal of my study, to explore the rewards and challenges of hospice work. I explained that s/he would not receive any compensation, monetary or otherwise, for participating in my study. With her/his permission I recorded our conversation on my digital audio recorder to be transcribed later by only myself, and these transcripts were saved on my personal password-protected computer. I explained I would destroy these audio files at my study‘s completion. I assured each participant that her/his identity would remain confidential, and that I would put all data connecting a participant‘s transcribed interview with her/his identity in a secure location known only by me. I list my study‘s participants in Table 3.1. I have given these participants pseudonyms to protect their identities. Prior to each interview I collected demographic information from each participant including her/his age, race-ethnicity, occupation, length of time working in hospice in general, and length of time working for Crossings Hospice in particular. In order to protect these workers‘ identities, I do not report the length of time they have worked in hospice. I interviewed ten nurses, six social workers, seven music therapists, three integrative therapists, one chaplain, one certified nursing assistant, and three bereavement counselors. My sample consists of 28 women and 3 men. Twenty-seven were White, two were Asian, one identified as Black/ Jamaican, and one identified as White/Hispanic. At the time of interview, these workers ranged in age from 27 to 67 years old.
20 Table 3.1 Descriptive Information on Participants______
Interview Date/ Pseudonym Occupation Time (minutes) Age Race/Ethnicity Margie social worker 4-11/108 63 White Bess music therapist 4-15/89 35 White Linda nurse 4-20/73 44 White Samantha nurse 4-21/66 35 White Cokie certified 4-23/50 67 White nursing assistant Margaret nurse 4-23/75 51 White Kim nurse 4-25/63 47 Asian Nina nurse 4-25/95 51 White Tammy social worker 4-26/68 46 White Mike integrative 5-2/73 53 White therapist Griffith chaplain 5-5/92 65 White Ida social worker 5-5/93 38 White/Hispanic Marie integrative 5-7/107 39 White therapist Kyle bereavement 5-7/101 60 White counselor Becky nurse 5-8/67 56 White Marcy music therapist 5-8/88 38 White Hazel bereavement 5-9/27 51 White counselor Donna social worker 5-9/76 51 White Sandra nurse 5-13/74 50 Black/Jamaican Hillary integrative 5-13/67 33 White therapist Mabel music therapist 5-13/76 52 White Trudy nurse 5-15/87 61 White Wilma social worker 5-15/92 65 White Lucy music therapist 5-19/81 26 Asian Beth nurse 5-19/53 54 White Hannah music therapist 5-19/70 28 White Twyla bereavement 5-20/70 48 White counselor Barbara music therapist 5-22/76 27 White Gilda music therapist 5-22/77 29 White Jessie nurse 5-27/88 56 White Dara social worker 5-28/81 34 White ______
21 Interview Questions For my study I wanted to explore how hospice workers experience their work, so I conducted these interviews in the style of a guided conversation. That is, I had —main“ questions that began our conversation, and I also —probed“ to explore further points and examples raised by the participant (Warren 2002). My interview questions focused on three main areas: why the worker chose a career in hospice, what s/he enjoys about their job, and what kinds of challenges s/he encounters in this line of work. While my questions on choosing hospice and its rewards were open-ended, for challenges I asked more specific questions that I had developed based on reviewing research on potential stressors in hospice work. For challenges of hospice work I asked participants about the following: dealing with the emotional aspects of caring for the dying and the grieving, working within an Interdisciplinary Team, working in different settings such as nursing homes and patients‘ private homes, having to care for increasing numbers of patients, having to serve both patient and family as the client/unit of care, and dealing with conflicts that may arise between her/himself and the client. (See appendix for complete list of interview questions).
Data Analysis As I explain in this section, I coded and analyzed my interview data throughout the process of data collection. In other words, themes regarding the rewards and especially the challenges of hospice work began to emerge as I continued to interview more hospice workers. I incorporated these themes into later interview questions, and by the last few interviews, no new themes emerged. My data had reached saturation (Charmaz 2006). In this study I use the method of grounded theory developed by Barney Glaser and Anselm Strauss (Charmaz 2006; Glaser 1999, 1998, 1992, 1978; Glaser and Strauss 1967) because, as I explained before, few studies have addressed my research question œ what kinds of challenges arise for hospice workers, and how do they attempt to cope with those difficulties? My study is exploratory rather than verificational; I aim to develop a substantive theory to explain how hospice workers interpret and deal with conflicts at work, not test/verify existing theories. Researchers have used the grounded theory
22 method to explore a wide range of issues, such as women coping with intimate partner violence (Zink et al. 2006), prosecutors‘ views on gender-bias hate crimes (McPhail and DiNitto 2005), and officers in correctional facilities dealing with conflicts at work (Tracy 2004). International studies in health care also have used the grounded theory approach to examine issues such as patients‘ discussions of end-of-life care with nurses in Australia (Clover et al. 2004), the nurse-patient relationship‘s influence on patient compliance in the U.S. (Dearing 2004), nurses‘ interactions with family caregivers in Australia (Jeon 2004), and palliative care nurses‘ views on euthanasia in Belgium (Verpoort et al. 2004). Although the research topics are diverse, the method of grounded theory is specific: —Grounded theory is an approach for generating theory that is grounded in and systematically derived from data, with an emphasis on the comparative method of constant, concurrent data collection and analysis. The aim is to develop a well grounded theory that describes, explains, interprets, and predicts the phenomenon of interest“ (Jeon 2004). Grounded theory uses the constant comparative method, the —technique of contrasting data first against itself, then against evolving original data, and finally against extant theoretical and conceptual claims“ (Duchscher and Morgan 2004). In constant comparative analysis, the final research questions emerge from the data, and at times even the original research question may be modified. Grounded theory thus begins with purposive/selective sampling, then becomes an inductive, dialectical process in which the researcher moves back and forth between data collection, initial/open coding, advanced/theoretical coding, memoing, and theoretical sampling. Like most researchers using this method, I used purposive/selective sampling in the beginning of my research project to choose participants who were most likely to offer data relevant to my topic. Usually the researcher does not decide upon a fixed number of participants in the beginning, because in the grounded theory method data collection relies on the principle of saturation, explained below. However, Warren (2002) suggests that between 20 and 40 participants are needed when relying on interview data, so my sample of 31 hospice workers fits with her suggestion. Most research using grounded theory takes the qualitative approach of semi-structured interviews with participants.
23 These interviews are transcribed and then coded (Jeon 2004; Polit and Hungler 1999; Verpoort et al. 2004). During the stage of initial/open coding, I fractured the data line by line to examine all possible issues and ideas contained within the data. When examining the data, Glaser (1978) asserts the researcher must keep in mind three main questions œ what is the data a study of, what category emerges from this line(s), and what is actually happening in the data? I created descriptive labels, i.e., codes, for these issues and ideas in the data. After fracturing every line of data, I grouped the original codes into more abstract levels of codes known as code families (Duchscher and Morgan 2004). At this point I shifted to advanced/theoretical coding, where the researcher weaves the fractured data back together by exploring the relationships between these codes. During this stage Glaser (1978) highlights the importance of memoing, —the theorizing write-up of ideas about codes and their relationships as they strike the analyst while coding“ (83). My memos aimed to conceptualize what to this point had been primarily described. Glaser points out that a memo can be a sentence, paragraph, or pages long, but in any case memoing must take priority over coding, because it is through this process of memoing that the theory will begin to emerge (Charmaz 2006; Martin and Turner 1986). Finally, theoretical sampling refers to the ongoing process of collecting data in order to generate theory. After I coded my interview data, I analyzed the codes in order to decide what data to collect next and from where. Data collection ends when the researcher reaches theoretical saturation, defined as when —1) no new or relevant data are emerging regarding a category, 2) development of the category‘s properties and dimensions can withstand variations in the context of the phenomenon, 3) the relationships amongst categories are well established“ (Duchscher and Morgan 2004: 610). Ultimately the theory that emerges from the data can be substantive or formal theory, which differ only in their level of generalizability. Like most grounded theory research, my study aims to develop a substantive theory, in this case of how hospice workers interpret and respond to conflicts that may arise in their work.
24 CHAPTER 4 CONFLICTS BETWEEN WORKER AND CLIENTS
Chapter 4 reports on my participants‘ discussion of conflicts that often arise between themselves and their clients (patients and families). Three themes emerged from my interviews. First, many hospice workers explained that some patients and families are in denial about and/or are uninformed about the dying and grieving process. I discuss this under the heading —Death is Taboo in the U.S.“ Second, most hospice workers complained that their patients received hospice services too late and would have benefited from enrolling sooner. I discuss this under the heading —You Go to Hospice to Die.“ Third, many participants gave examples of conflicts that arise due to differences between worker and client, whether those differences be cultural, religious, or mental state. I discuss this under the heading —Other Possible Sources of Conflict.“
Death is Taboo in the U.S. In the U.S. the subject of death is taboo. That is, it is generally socially undesirable to discuss and/or confront death. Studies reveal that this U.S. attitude differs from many other cultures. For example, in Lithuania people lay out the deceased person in the living room and stay with the body for several days. After the person is buried, family and friends attend a funeral dinner to remember and honor the deceased person as well as other family and friends who have died. Lithuanians also regularly visit the gravesites of their loved ones to feel connected to those who have died. On the other hand, in the U.S. funeral and burial services often are relegated to companies. It is common for Americans to distance themselves from the dead, and the practice of regularly tending gravesites is relatively rare compared to other cultures (Coor et al. 2000; Kastenbuam 2001; Laderman 2003; Roff et al. 2006). In the U.S. people often become uncomfortable with the subject of death, especially when it is the approaching death of a loved one. Many hospice workers in my study spoke about how common it is for patients and/or their families to be in denial about the patient‘s approaching death. Sometimes this denial results in families and patients trying to —protect“ each other from the terminal diagnosis. Workers also
25 discussed how this discomfort with death results in many of their clients not fully understanding and hence being unprepared for the processes of dying and grieving. Finally, many workers complained that the wish to avoid death led many patients and families to keep requesting curative treatments, although cure-oriented/aggressive treatment runs counter to the hospice philosophy of care. Consequences of Death as Taboo Clients‘ denial about impending death. Because the subject of death is so forbidden in U.S. culture, many patients and/or their families are in denial about the patient‘s approaching death. This tendency to first reject a terminal diagnosis is described by Kubler-Ross in her 1969 book On Death and Dying. In this seminal work on grief, Kubler-Ross proposes that most people deal with grief by transitioning through five distinct stages: denial, anger, bargaining, depression, and acceptance. She explains that when people first receive a terminal diagnosis they usually reject the news by thinking/saying, —This isn‘t happening to me!“ Studies find that hospice workers often face the challenge of helping family members come to terms with their loved one‘s impending death (Csikai 2004). The hospice workers in my study spoke of patients and families who are in denial about having a terminal illness. This denial often places a great deal of stress on hospice workers, who at times must explain and then explain again that the patient is indeed dying. I commented to social worker Margie: G: —Well, your patients must love you, I hope that they verbalize that to you.“ M: —Well, there have been plenty who‘ve kicked me out.“ G: —Really? I can‘t imagine, why would they kick you out?“ M: —Because part of my job is to help someone face the fact that someone‘s dying, and if they‘re not ready to hear that, they can be very vocal and œ There‘s a patient now that when the daughter‘s in town, they call me, ”Don‘t come.‘ She doesn‘t want to see me, because I was the one who made her realize that her dad is not going to be around forever. And she‘s still living in this world where dad‘s going to get up and walk away, and that‘s not going to happen.“
26 Sometimes it is very difficult for family members to accept their loved one‘s impending death. Margie‘s anecdote illustrates the challenge hospice workers face in helping family members overcome their denial. In situations where a patient and/or his/her family is in denial, hospice workers must strike a balance between stating the obvious, that the patient is indeed dying, versus not further upsetting the patient and family. Hospice workers allude to how this is a delicate balancing act, in which the worker must be blunt but also gentle and polite. Nurse Kim talks about how common it is for patients and families to be in this state of denial: K: —. . . They haven‘t accepted the fact that the patient œ their loved one has terminal illness. It‘s very difficult because they‘re in denial, and we get those people, patients and family, and that‘s very difficult.“ G: —Yeah, that must be really hard.“ K: —Oh yeah, because you have to really be there, and you can‘t push your œ like, ”ok, wake up!‘ {laughing} ”Move on!‘ And like one of the nurses I‘ve heard said, ”Well, ma‘am, your loved one is dying.‘ And sometimes you have to do that, you know, politely, and he was very polite when he said that, but . . . . And I hear that all the time, ”But ma‘am,‘ and they don‘t see it. If they hear the dying part and still don‘t see it, then it‘s very difficult for us to treat.“ Kim‘s comments demonstrate the fine, tenuous line hospice workers must negotiate. On one hand, hospice workers must explicitly acknowledge that yes, this person is dying, in order for the patient and family to be able to communicate and move forward together through the process of dying and grieving. On the other hand, hospice workers understand that denial is a normal reaction to a terminal diagnosis, and that if the worker is too blunt or pushy then s/he risks it backfiring and further upsetting the patient and family. Clients‘ —protecting“ each other. Because some patients and/or families are in denial about the terminal diagnosis, many patients and families try to —protect“ each other from the terrible news. For example, hospice workers talked about situations where family members wanted to protect the patient from having to experience the grief that
27 comes with knowing that one is going to die in the near future. At times family members would pressure the hospice worker to not discuss or even mention death, to put forward a happy face, to keep the situation as light and happy as possible. Music therapist Marcy talks about one such situation. A patient‘s daughter had instructed her to —only play happy music, happy music“: —A lot of times we have family members who are like, ”don‘t mention the death word,‘ everything is happy and wonderful and dah dah dah. Well, this particular patient, the daughter, went as far as to have printed song sheets with songs that would be appropriate for me to play for her mother. Which means that the daughter was so in control and she was in denial and she was not going to go there and allow anything. So but then fortunately by the grace of god she got a phone call and she had to step out for a good portion of it. And I was like thank goodness, because then I could really see what the patient needed, and it‘s so interesting because I was playing this Cole Porter song called ”You‘re the Top,‘ and it just conjures up so many different, it mentions Paris, and this museum, and this particular actor that was popular, I mean, totally in this woman‘s era. And so that just opened up a lot of reminiscing, which her daughter had certain rules, ”We don‘t discuss this, we don‘t discuss that,‘ dah dah dah, and so with the daughter out of the room, the patient started talking about her husband, who was the daughter‘s father, was killed in World War II, while she was pregnant. And the daughter has told her ”I don‘t want to hear about my father, and that happened so long ago and we don‘t talk about that.‘ So the patient was saying, ”Gosh, this song reminded me of, this led to the memory of my husband,‘ and then she said, ”My daughter doesn‘t like for me to talk about that.‘ And I said, ”Well, you‘re obviously still affected by your husband and his memory, do you want to talk about him?‘ And she looked at me like ”is that ok‘ and I said ”Absolutely.‘ Because again, you meet them where they are. And like I said, the daughter was on a phone call, which was wonderful, and this patient, we did a little bit of music, but she talked about her husband, and she talked about how hard it
28 was to be pregnant and finding out that her husband had been killed in battle, and she says, ”You know, I‘ve had a lot of tragedy in my life.‘ So I just provided a lot of supportive, validating, listening, because that‘s what she needed. I felt like she needed that more than she needed any music. And at the end, I‘ll never forget this, she said, ”Your music was beautiful and I thank you for that. But what I really appreciate is that you listened to my stories.‘“ Marcy‘s anecdote demonstrates how the daughter tried to avoid any acknowledgement/discussion of her mother‘s approaching death. The daughter‘s instructions to Marcy that she —play only happy music“ is her attempt to control the situation and protect her mother from experiencing the grief that comes with realizing one‘s own mortality and reliving one‘s memories, realizing they are about to come to an end. Although the daughter clearly wants to make things easier on her mother, this attempt at sugarcoating the impending death actually may conflict with what the patient wants. We can see from Marcy‘s story that what the mother actually desired was precisely to be able to talk about her memories, and to experience her sadness. Because the daughter left to take a phone call, Marcy was able to fulfill her patient‘s wishes and be there to listen and to validate her experiences. When listening to Marcy‘s story it struck me that perhaps what is going on here is a combination of things. Yes, the daughter clearly is trying to protect her mother from feeling the feelings that come with a terminal diagnosis. At the same time, it seems to me that perhaps what is also going on here is that the daughter is trying to protect herself as well. Because she does not want to face the fact that her mother is indeed dying, she tries to keep the situation as carefree and happy as possible so she herself does not need to come to terms with her mother‘s inevitable death. While some family members try to protect the patient from experiencing the grief that comes with a terminal diagnosis, other family members try to prevent the patient from —giving up“ by not acknowledging openly that the patient is dying. Many hospice workers in my study explained that family members often do not want the patient to know that s/he (the patient) is receiving hospice care, because they fear that the patient will lose all hope. Numerous hospice workers spoke of situations where a family
29 member said to them, —Flip your badge,“ referring to the worker‘s hospice identification badge. The instruction to —flip your badge“ basically means that the family member does not want the patient to know that the worker is from hospice. Many family members are afraid that if the patient knows that s/he is receiving hospice care, then the patient will —give up.“ In other words, family members fear that the patient will stop fighting to live, that the patient will just give up and die. Although in these situations family members are trying to protect their loved one, again, it seems to me that multiple issues are at play here. Consider social worker Margie‘s point: —There‘s another scenario where you‘ll have a family member sign in someone on hospice, but the person is not completely out of the picture, so they‘ll say, ”Don‘t talk about hospice, just flip your badge.‘ And it‘s really funny {laughing} when you go in there, without the badge and without talking about hospice, and, because I‘m a social worker, I‘m in a nursing home, well, I‘m a social worker from the nursing home, ok, and I‘ll ask a couple questions checking on them and she‘ll say ”Are you from hospice?‘ {laughing} The patient has accepted the fact that they‘re dying, it‘s the daughter who can‘t do that yet. That‘s why I don‘t mention hospice. So the daughter is trying to protect the mother, and the mother is way ahead!“ By —flip your badge,“ family members are trying to protect their loved one from the fact that s/he is dying. However, it also seems to me that —flip your badge“ is also a way that family members are trying to postpone their own grief, by trying to remain in denial that their loved one is indeed dying. Perhaps it goes something like this: if the patient does not know s/he is dying, then in a way s/he is not, for the family member, and that means the family member does not have to deal with not only their loved one‘s emotions, but also they do not have to deal with their own emotions either. In addition to family members trying to protect the patient, apparently there are numerous situations where patients try to protect their family members. Patients will do this by not acknowledging openly that they are dying. Many hospice workers explained that the patient often knows that s/he is dying. While some patients may be in denial,
30 what actually happens much more often is that the patient will tell the hospice worker not to tell family members that s/he is dying, and/or that s/he (the patient) knows s/he is dying. In other words, the patient is trying to protect her/his family. Ironically, this often happens simultaneously in the same situation. Music therapist Marcy says, —It‘s just unfortunate because we‘ve also, probably every therapist can tell you this, we‘ve all had somebody where the family said {lowers voice} ”Don‘t tell mom or dad they they‘re dying.‘ And then we go in {laughing} and we speak just with the patient and they‘re like ”Look, I know I‘m dying,‘ {lowers voice} but don‘t tell my family.“ In other words, what often happens is that the family does not want the patient to know s/he is dying. And the patient, who indeed does know, does not want the family to know, and the patient does not want the family to know that s/he knows! The consequence is that while the family and patient are so busy —protecting“ each other, no one is really communicating, which hospice workers point out is so vitally important in this final stage of life. Clients‘ lack of knowledge about dying and grieving. So far I have discussed how the taboo nature of death in the U.S. often results in patients and families either being in denial about the impending death or feigning ignorance about it in order to protect each other. A second consequence of death being so taboo in U.S. culture is that many patients and families do not understand the ins and outs of the dying and grieving process. That is, most people in the general public are not knowledgeable about what really goes on when someone is dying. My conversations with hospice workers reveal that most patients and families are uninformed about, uncomfortable with, and/or unprepared for multiple aspects of the dying and grieving process. Specifically, many patients and families do not understand the physiological/medical process of dying. Furthermore, many families do not understand the emotional/psychological aspects of dying either. According to my participants, many patients and families do not understand what happens physiologically to a person who is in the process of dying. Some workers described situations where a family member became visibly upset and offended when
31 their loved one refused to eat a meal that s/he (the family member) had prepared. While the family member was distraught and took it as a personal affront, health care workers know that an individual who is in the process of dying reaches a point where s/he no longer wishes to eat. My participants explained to me that this is a normal part of the dying process. The body is in the natural process of shutting down, so at this time the patient loses his/her appetite. In addition to rejecting food, a dying person often will have changes in his/her breathing. My participants described situations where family members were frightened to hear their loved one making —gasping“ noises, because the family feared their loved one was suffocating, not receiving enough oxygen, and so on. Again, my participants explained to me that changes in breathing patterns become more pronounced as a person nears death. In addition to not knowing about the physiological aspects of the dying process, many families do not seem to understand the emotional/psychological aspects of dying and grieving either. Many hospice workers explained that family members often seem highly uncomfortable with interacting with their dying loved one. For example, family members often will stand back away from the patient. They seem afraid to move closer to the patient, afraid to touch or to cry with or in front of him/her. This lack of understanding about and discomfort with the emotional aspects of dying seem to spill over into the grieving process as well. In other words, many family members do not know what to expect after their loved one has died. Bereavement counselors in my study explained how many grieving family members are worried that they are —going crazy“ or —losing their mind,“ because they cannot function, concentrate, and so on. These family members‘ fears are often reinforced by their friends and acquaintances, who seem to impose some sort of time limit on grief, that it‘s been x number of months that the patient died, and by now the family member should be ok. Bereavement counselor Kyle describes how this happens: —Here we have people with a legitimate problem, their grief is really surprising to them, that they‘re so devastated, so unable to function, so affected by the loss of an important person, and our culture says ”you should be moving along now,‘ and they‘re not able to, and they‘re confused, ok? And some of them feel quite adequate, ”I have a right to
32 feel bad‘ and so on, ”I want some help to feel better, I need to process the death.‘ But most of them really have to learn, this is the way it is. Now I don‘t say ”Well you didn‘t learn some things before the death about emotion and stuff like that, and now you have to.‘ But I do say to them, ”This is more difficult than what we usually think about, our culture doesn‘t support you with information or people wanting to talk to you about something everybody‘s afraid of, and it‘s a mysterious issue.‘“ My conversation with Kyle highlights how not only are family members not knowledgeable about their own grieving process (that, for example, it is actually perfectly normal to feel —crazy“), but this also shows how the general public may be well- intentioned but ultimately may put unfair pressure on the grieving family member due to their own lack of understanding. Clients‘ desire for curative treatments. So far I have explained how the taboo nature of death in the U.S. can lead patients and families to be in denial or feign ignorance, and how also the taboo results in most people not understanding fully the process of dying and grieving. My conversations with hospice workers revealed yet another consequence of death as taboo. Many hospice workers described how some patients and family members try to avoid death by pushing for more curative treatments, such as chemotherapy, radiation, and dialysis. This poses a dilemma for hospice workers, because a main tenet of hospice philosophy is its emphasis on comfort care rather than cure. As I explained in Chapter 2, hospice actually originated as an alternative to curative treatment. Hospice services are meant for those patients whose condition no longer responds to curative treatment, and hence the focus in hospice is on alleviating pain and giving the patient the most dignified death as possible. However, because some patients and/or their families are trying to avoid the inevitable (death), they continue to ask the hospice worker for treatments that are considered curative. These requests place the hospice worker in a difficult position. On one hand, the hospice philosophy mandates that the emphasis be on comfort care, not curative treatment. On the other hand, a central point of the hospice philosophy is that the patient and family are given control over the dying and grieving process. Hospice advocates for patient autonomy, that patients and their families have the right to make their own decisions
33 regarding the dying process. This contradiction often puts stress on the hospice worker, who is trying to balance between these two opposing ideals. (Please note that in Chapter 5 I discuss how the fact that hospice is becoming more like a business complicates this issue even further). To summarize, so far I have explained how discussing death in the U.S. is considered highly taboo. This leads to challenges for hospice workers whose job is precisely to deal with this forbidden subject. The taboo nature of death often results in patients and/or families being in denial about the approaching death. At times, patients and families attempt to —protect“ one another by feigning ignorance about the approaching death. Hospice workers‘ jobs are made even more difficult when patients and families do not understand the ins and outs of the processes of dying and grieving. And finally, the desire to avoid or at least postpone death often leads to patients and/or families pushing for more curative treatments, which is antithetical to the longstanding traditions of hospice. Since I have explained the challenges that arise from the fact that death in the U.S. is so taboo, now I turn to the primary coping strategy hospice workers in my study use to deal with these challenges: they must educate their clients. Coping Strategies Educating clients. Because U.S. culture is so quick to dodge the subject of death, many patients and families do not fully understand nor know how to deal with the processes of dying and grieving. As I explained previously, for example, many families are hurt and offended when their loved one refuses to eat, or they become afraid when their loved one‘s breathing becomes more labored. Hospice workers deal with this lack of knowledge on the part of families by trying to educate them in the physiological process of dying. Social worker Margie describes one such situation: —Well, this lady‘s 99 years old, she‘s lived a good life. Her son comes out, he‘s not accepting the fact that his mother is actually dying, ”Well, how do you know she‘s actually dying? She‘s been dying œ the doctor told me 15 years ago that she was dying and she‘s lived for 15 years, she‘s bounced back, how many times have you told me this might be it?‘ And I says ”Well, we never know but we‘ve gotta tell you, and sometimes we‘re not sure, but if you want to come out and say goodbye this might be it, do it.
34 We‘d rather err that way, than not call you at all.‘ So he says, ”You‘re not feeding her!‘ and the nurses say to him ”At this point in time the food is not comfort, it‘s harm, because it goes to the lungs and she aspirates and she dies a horrible death. You don‘t want that.‘ ”How do you know that? You‘re only saying that because she‘s 99!‘ {laughing} At this point I look over and I say, ”Ok, listen, it‘s not that she‘s 99, she could be 15, she could be 3, she could be 50, age has no difference at this point, she is {overly enunciating} actively dying. Nobody can reverse the active dying process unless you have a miracle, or god standing right there. You cannot reverse actively dying, the body‘s shutting down.‘ And we went in and we showed him. ”All the organs inside, like the digestive system, they‘ve shut down already.‘ We spent I don‘t know how long the nurse and myself and then the chaplain came in to do the spiritual side of it.“ Margie‘s anecdote reveals some of the consequences I have explained of death being so taboo. The patient‘s son clearly was in denial about his mother‘s approaching death. After all, when someone reaches the age of 99, one should probably be aware that death is most likely not that far off. In addition to being in denial, evidently the son also did not understand the actual physiological process of dying. Therefore he was understandably afraid and angry when he discovered that the hospice workers were not feeding his mother. Because he lacked knowledge about what happens physically to a person as s/he dies, he viewed the hospice workers as starving his mother to death. The hospice workers had to explain to him and to show him what dying physically involves. Furthermore, because death is so taboo, family members are often emotionally unprepared to deal with their impending grief. So in addition to the social worker and the nurse explaining the physical aspects of dying, then the chaplain came into the situation to address the son‘s emotional and spiritual needs as well. Because many families are so uncomfortable with their loved one‘s approaching death, there are numerous situations where family members will stand back away from the patient, afraid to move close to, touch, or cry with him/her. This is yet another situation where hospice workers must educate families on how to interact with their dying loved one. Integrative therapist Mike explains one such situation:
35 M: —I had an example where the gentleman was in a recliner and he was leaving. The whole family, there was like ten of them in the room, and they were standing way in the back of the room.“ G: Like away from the patient? M: —Yeah, away, like they were nervous. And they were all kind of crying and they were like afraid to be near a dying person, you know? They didn‘t know what to do. and I was cotreating with the music therapist and she was just leaning, angelic as usual, just beautiful, the way she sang and played and worked with the rhythm of the body and we both kind of did this thing where the patient was in a very good state, but still declining, and everybody was upset. And so I said at the end, ”Wait, everybody stop, everybody come over here to the bed.‘ And they kind of moved over to where he was. ”Everybody put your hands on the patient.‘ And I did an exercise where I told them ”Imagine the light of the moon, breathe it into your lungs, and breathe it into your father, the patient. And as you exhale, say everything you want to say, he‘ll feel everything you‘re thinking and feeling.‘ So they all have their hands on him, and I have my hands on him. We did it three times and I said ”Now on the third exhale, you keep your head down and you say whatever you want to say.‘ They all did that, and I read that two hours later he died peacefully with his family all around his bed. And that was their bonding with them.“ Mike‘s story reveals the multifaceted ways that hospice workers attempt to educate patients and families. In addition to explicitly explaining things and giving instructions, education also takes the form of modeling, or teaching by example. Mike‘s story, and the stories of many of my participants, reveal how hospice workers try to demonstrate by example what they want family members to do. In other words, hospice workers will do what they want patients and families to do. In addition to educating patients and families about the dying process, hospice workers often must educate families who are grieving after their loved one has died. Earlier I explained how many grieving individuals are afraid that they are going crazy, because they feel so unable to function or concentrate. My participants often talked
36 about the need to educate those who are grieving. Bereavement counselor Kyle elaborates: —So what you do is validate, normalize, there‘s a huge need for normalization. The impairment of concentration, for instance, when someone is bereaved, is a real common symptom, but they think they‘re really losing it. So you have to be a real good educator . . . . So we‘re counterbalancing the part that‘s harsh on themselves. So that makes a lot of room for support, the education piece. For me it‘s partly, and I don‘t accomplish this with many people, but what I‘m trying to get them to do is have their system accommodate pain rather than fight against it, so that the sadness can be felt, and that the energy of it, the movement of it can leave them rather than controlling it, blocking it off . . . . Kind of what I‘m doing is helping them allow for what their real experience is.“ For bereavement counselors in particular, their work lies in not only education but also —normalization.“ In the U.S. death is so taboo that consequently many family members do not understand what grieving involves and hence are unprepared to cope emotionally with their grief. Bereavement counselors therefore must educate families by literally explaining the grieving process. They also must validate the emotions and experiences of family members as —normal“ and as inherent in the grieving process. Finally, because death is so taboo in the U.S., some patients and/or their families continue to ask for curative treatments such as chemotherapy, radiation, and dialysis. Their requests place hospice workers in a truly difficult situation, because hospice philosophy mandates that care be palliative and comfort-oriented, not cure-oriented. However, hospice workers also believe strongly in patient autonomy, that patients and families have the right to make their own decisions and take control over this stage of life (Chapter 2). In these situations where patients or families continue to press for curative treatments, hospice workers must again focus on education. Nurse Margaret explains: —Now if the patient herself says [I want this treatment] because I know I can beat this thing,‘ then that‘s not appropriate, that is cure, she is seeking curative therapy . . . . And basically we have to educate, we tell them curative is not appropriate, that‘s not hospice, but they can revoke [opt out
37 of] our services, they can sign off saying ”I don‘t want hospice anymore.‘ And basically they‘re given that opportunity, ”You want to pursue these treatments, you can revoke us, go back to your insurance and have them pay for that.‘“ Because death is taboo, some patients and families push for treatments that are not considered —appropriate“ by hospice. So again we see that hospice workers must educate patients and families as to what hospice philosophy entails, what hospice considers appropriate versus inappropriate. Education means, therefore, that sometimes workers must explain to patients and families that cure is out of the realm of hospice, but that there are alternatives if that is the route they (patients and families) wish to go. It seems to me that educating patients and families is a problem-oriented coping strategy these workers use to cope with the challenges that arise from death being so taboo. In Chapter 2 I explained that workers use both problem-oriented strategies as well as emotion-oriented strategies to cope with conflicts that arise in their work. Problem- oriented strategies focus on the source of the conflict, while emotion-oriented strategies center on the worker‘s emotional response to the conflict. It may be that educating clients in order to deal with death as taboo is a problem-oriented coping strategy, because these participants are tackling the challenge directly. That is, they are trying to explain (in various ways) to their patients and families the processes of dying and grieving, as well as hospice philosophy and practice. Because studies show that problem-oriented coping strategies usually are more successful at mediating the effects of role conflict, the literature often refers to these as forms of adaptive coping versus emotion-oriented strategies as maladaptive coping (Siegall and Cummings 1995). Because my participants‘ attempts to educate their clients seem usually successful, I agree that in these situations their strategy seems to be adaptive. To summarize, U.S. culture considers death a highly undesirable and even forbidden subject. People often spend their lives dodging the topic of death until they are literally forced to confront it, usually when a loved one‘s death is inevitable and near. Because death is so taboo, patients and families often are highly unprepared for this final stage of life. Hospice workers therefore must deal with patients and families who are in denial about the inevitable, who wish to —protect“ one another from the inevitable, who
38 literally lack knowledge about the inevitable, and who wish to avoid or at least postpone the inevitable. Hospice workers attempt to manage these challenges by making education a priority. That is, they explain, they model, they give alternatives. In sum, hospice workers teach. I have explained how hospice workers attempt to manage the challenges that arise from death being so taboo in the U.S. Now I turn to another challenge that arises when working with patients and families: dealing with the misconception that hospice is a place where you go in order to die.
—You Go to Hospice to Die“ Many patients and families postpone hospice because the general public has the false impression that hospice is —a place where you go to die.“ This misconception probably stems, in part, from the fact that indeed hospice services are designed to provide care for a patient who has been diagnosed with a terminal illness and has an estimated life expectancy of six months or less. However, prognoses are not a perfect science; many patients may be diagnosed as —terminal“ and yet live past six months. In fact, this is so common that many of my study‘s participants spoke about —graduates from hospice,“ that is, patients who lived longer than six months and improved so much in their health that they ended up leaving/going off of hospice. Despite the uncertainties related to a terminal illness, the general public still continues to believe that hospice is simply where one goes to die. This misconception holds many consequences for hospice workers. First, hospice workers are frustrated because they feel that patients and their families are receiving hospice services —too late.“ Second, because many patients and families do receive hospice too late, the misconception turns into a self-fulfilling prophecy. Finally, for hospice workers, this misconception ironically leads to challenges on the opposite ends of the spectrum. On one hand, some patients and families refuse to accept œ or begrudgingly accept œ pain medications, fearing the medications will —kill“ the patient. On the other hand, some patients and families request euthanasia, because they think that is precisely what hospice does.
39 Consequences of Misconception Hospice too late. Studies reveal that people often enroll in hospice very late in their disease process. This delay in receiving hospice care results from many factors, ranging from poor communication between physicians and their patients to requirements for hospice eligibility (Casarett and Quill 2007; Christakis and Iwashyna 2000). Most people have the idea that hospice is a place where one goes to die. The hospice workers in my study often complained how this misconception causes many patients and families to delay enrolling in hospice until the patient is very close to death, sometimes in a matter of days. Most workers referred to this delay as patients and families getting hospice services —too late.“ As I listened to workers voice their frustration, I began to understand what they meant by —too late.“ —Too late“ means that while hospice offers a wide variety of services, patients and families often fail to benefit from these services because the patient dies practically as soon as they are enrolled in hospice. Integrative therapist Mike gave a personal example about the public‘s false impression of hospice. He talks about a patient he was treating before he started working for hospice, but he (Mike) already knew a great deal about hospice because his wife was working there already: —I had a patient that I had on my [private] practice before I joined hospice, and he had gotten a diagnosis with cancer and I said, ”Man, you should really go into hospice. Hospice is good because you can get care, you can get all these things.‘ And he goes, —Are you saying it‘s over Mike, I‘m gonna die, that‘s the end of it?‘ And I said, ”No, but my wife‘s there‘ œ I wasn‘t in hospice yet œ ”She‘ll be able to see you, and you can be at home and‘ œ ”Mike, are you saying I should just give up? Because hospice means that‘s it, it‘s over, there‘s no more hope.‘ And I said, ”No that‘s not true, there‘s a lot of people that leave hospice that they don‘t die.‘ He says, ”No Mike, I want you to work,‘ and I said ”Ok, well I‘ll call you back.‘ And I kind of left it. And next thing I get this call ”Are you Mike?‘ I said ”Yes.‘ And they said, ”Well, this patient called and they joined hospice but they want you do the massage therapy because they know you.‘ And I said, ”Really?‘ And they told me the name, it was him. But
40 the wife convinced him, and I got to work with him all the way to the end. And that was emotional, because I knew the guy, we were friends actually. So see, his perception was that going to hospice is a death sentence. But they saw, he and his wife, that it‘s totally different once they were in here, totally different ballgame. I just wish people would get that more.“ Mike‘s anecdote demonstrates how many people falsely view hospice as a last resort, a place one goes simply to die. The patient in Mike‘s story does in fact enroll in hospice early enough to benefit from the many services hospice has to offer. However, this patient was able and willing to do that because Mike happened to know about hospice since his wife worked there. The patient‘s wife also helped convince him to take advantage of this opportunity for end-of-life care. Unfortunately, not all patients are as informed as this particular patient was. As I explained earlier, many of my study‘s participants voiced their frustration that many patients and families received hospice —too late,“ that is, too late for them to truly benefit from the variety of services hospice has to offer. Indeed, Crossings Hospice does offer a multitude of services for those approaching end-of-life and their loved ones as well. Hospice physicians, nurses, certified nursing assistants, and pharmacists provide medical care for patients and families. Social workers provide emotional and psychosocial care and support for patients and families. They also can help patients and families navigate through the paperwork and bureaucracy of government rules regarding Medicaid and other social services. Chaplains and spiritual care counselors are available to provide spiritual support and, if desired, guidance, for patients and families of all faiths and belief systems. In addition to medical, psychosocial, and spiritual care, which is relatively standard among hospices, Crossings Hospice also employs integrative therapists, music therapists, and bereavement counselors to provide further services to patients and families. Integrative therapists offer holistic treatments including palliative massage, reiki, aromatherapy, guided imagery, and relaxation techniques. Music therapists work with patients to help relieve stress, alleviate physical pain and other symptoms, encourage emotional expression, and conjure memories. Bereavement counselors offer counseling and grief support to family members and friends of hospice patients who are in the
41 process of dying or who have died. These counselors are also available to offer support to those who are dealing with the loss of a beloved pet. In sum, Crossings Hospice offers a breadth of services that are meant to help guide and support patients and families going through the processes of dying and grieving. This is why so many of my participants vehemently pointed out that hospice, and Crossings Hospice in particular, should not be restricted to the last days or hours of a patient‘s life. Their services are meant to benefit patients and families throughout the entire journey of death and grief. Self-fulfilling prophecy. Because of the general public‘s misconception that hospice is a place where one goes simply to die, many hospice workers feel that patients and families are enrolling in hospice too late. A second source of frustration for hospice workers is that this misconception can become a self-fulfilling prophecy. That is, because many patients and families believe that hospice is where one goes to die, then some patients and families wait until the last days or even hours of life to attain hospice services. The result is that these patients do die within a few days or even hours of being enrolled in hospice. Ironically, then, the public‘s misconception becomes reality œ some patients do in fact go to hospice to die. Nurse Margaret explains: —A lot of families are like ”Oh no, you‘re gonna come in and you‘re gonna kill‘em.‘ And that‘s very challenging for us because unfortunately many patients don‘t come in to hospice care until very late into their disease process. They come in so late so yes, it may appear that we‘re gonna give‘em medication and then they‘re gonna die, but we didn‘t kill them, they were in the active dying process.“ Margaret‘s comments reveal how the misconception can become reality. That is, because some patients and families do delay hospice, it may then appear that hospice —killed“ them when, in fact, the patient died naturally from his/her disease process. But ironically, from the general public‘s point of view, that patient did go to hospice to die. —No morphine“: fears of euthanasia. In addition to revealing how the misconception —you go to hospice to die“ can become a self-fulfilling prophecy, Margaret‘s comments also point to a related challenge for hospice workers, that some patients and families are afraid that it is the pain medication hospice provides which will
42 —kill“ the patient. Studies reveal that many hospice patients and families, cross-culturally as well as in the U.S., fear that pain medications such as morphine will cause the patient‘s death (Bercovitch and Adunsky 2004; Morita et al. 2000). Many of my study‘s participants spoke about the challenge of dispelling the myth that pain medications, especially morphine, will kill the patient. Social worker Tammy explains: —It‘s just a commonly held misconception that morphine kills. And it does slow down respiration, but it allows the person to breathe more effectively, as I understand it. I think there‘s enormous commonly held misconceptions about hospice in general, I mean people hear the word ”hospice‘ and they think it means oh my god they‘re gonna die. And many times that is the case, but many times it‘s not.“ Tammy‘s point was reiterated by numerous participants, that patients and/or their families often refuse morphine and other pain medications out of fear that the patient will die because of the medication rather than from the disease process. This insistence of —no morphine“ frustrates and saddens many hospice workers, because they strongly advocate for the use of medications to relieve the patient‘s pain. My participants explained to me that morphine and other pain medications do affect/slow down breathing. However, hospice workers closely monitor the amount of medication dispended to their patients. Under this close supervision, it is not that the morphine —kills“ the patient. Rather, the medication‘s alleviation of pain allows the patient to relax, breathe more easily, and for his/her disease process to take its natural course. A central tenet of hospice philosophy is that workers provide comfort care and facilitate a dying process that is as dignified and as pain-free as possible. Hospice prides itself on symptom management (Chapter 2). However, when patients and/or their families reject the means of achieving that pain-free death, hospice workers can become frustrated and upset. Nurse Margaret describes a situation which still saddens her to this day: —I‘ve had some real challenges specifically with regard to pain medication, morphine still seems to be a dirty word for a lot of families . . . . I‘ve had patients, especially younger ones, where families have refused pain medication completely, and a couple of times I‘ve thought, ”Well, I‘ll just bring them the little liquid bottle just in case,‘ and then they were œ I had
43 one family become very angry, ”Well, I told you I don‘t want it.‘ And I said, ”If she needs it, it‘s not gonna be here.‘ And they said, ”She will get through it.‘ This patient died, a 25-year-old, end stage breast cancer, this young lady died a very painful death. I was with her at the very end, and it was very painful. You know, all I could do, I massaged her, I had a warm compress, I just did anything I could think of to provide comfort.“ Margaret‘s story illustrates the real-life consequences of the misconception that morphine kills. The public‘s lack of accurate information about pain medications like morphine can lead to patients suffering needlessly in their end of life. And Margaret‘s story is not an isolated incident. Numerous hospice workers in my study complained about the public‘s misconception about morphine and how that made their work more difficult when trying to keep patients as physically comfortable as possible. —Give her the shot“: requests for euthanasia. Ironically, the misconception that hospice is a place one goes to die raises for hospice workers challenges that are on the complete opposite ends of the spectrum. On one hand, I have explained how this misconception can cause some patients and families to be very suspicious of or flat out reject pain medications such as morphine. This makes the hospice worker‘s goal of alleviating pain and providing comfort care much more difficult. On the other hand, the misconception that one goes to hospice to die also raises challenges at the other end of the spectrum. Because the general public stereotypes hospice as a place of death, some patients and families enroll in hospice believing that hospice is a place one goes if they wish to request euthanasia. Studies reveal the kinds of challenges hospice workers encounter when faced with requests for euthanasia. When a patient and/or family asked for physician assisted suicide (PAS), this highlights potential contradictions inherent in the hospice philosophy. First, within the hospice philosophy there exists a potential contradiction between patient autonomy versus sanctity of life. The principle of patient autonomy, also known as self- determination, asserts that the patient is given control over his/her process of dying. This emphasis on patient empowerment has existed since the founding of the hospice movement around thirty years ago. Another principle, the sanctity of life, affirms the intrinsic value of life and asserts hospice workers‘ professional responsibility to guard
44 and improve patients‘ lives. This emphasis on the meaningfulness of life includes the process of dying, hence hospice mandates that workers neither hasten nor postpone a patient‘s death. The NHPCO‘s Code of Ethics explains that patient autonomy is premised upon the patient being competent and not engaging in actions that pose risk to themselves or others (McMahon 2003; Mesler and Miller 2000; NHPCO 1996). Preliminary studies indicate that a contradiction may arise between patient autonomy and sanctity of life if a dying patient wants to control the specific timing and circumstances of her/his death through means such as physician assisted suicide (Campbell et al. 1995; McMahon 2003; Mesler and Miller 2000; Miller et al. 2002). Since PAS is viewed as a threat to the sanctity of life and an action that poses risk for the patient, the NHPCO prohibits hospice workers from supporting patients through PAS. However, the issue raises an inherent conflict in the philosophy. Mesler and Miller (2000) and Miller et al. (2002) interviewed hospice workers practicing in Oregon, where PAS is legal, as well as in the eastern region of the U.S. (where PAS is illegal). These studies indicate that hospice workers range in their views on the appropriate role of hospice in PAS. Some hospice workers opposed PAS because they felt that not enough patients know about hospice and its ability to serve as an alternative to PAS. Other hospice workers felt that a patient‘s request for PAS shows how, in that instance, hospice has failed in providing adequate care. However, some of these workers expressed support for PAS by pointing to the dilemma that arises when a patient inquires about or requests PAS. On one hand, hospice philosophy says hospice neither hastens nor prolongs death. However, hospice also respects patient autonomy and advocates that patients have control over their dying process. In sum, hospice workers have pointed to this conflict between the hospice philosophy‘s principles of espousing patient autonomy while simultaneously prohibiting workers from helping a patient hasten death. The issue of PAS raises a second potential contradiction within the hospice philosophy œ the conflict between involving the patient‘s family versus honoring patient confidentiality. Unlike other health care settings, hospice was founded on the principle that the family, not just the patient, is the unit of care. Hospice workers have a professional responsibility to care for the family while the patient is alive and, when the patient dies, hospice workers continue to support the family through their bereavement
45 (Campbell et al. 1995; Gray-Toft and Anderson 1986-87; Mesler and Miller 2000; Miller et al. 2002; Miller and Mike 1995; Zimmerman and Applegate 1992). Hospice, like other settings involving therapeutic relationships, also espouses the principle of patient confidentiality. This principle asserts that hospice workers respect the patient‘s right to privacy, which is seen as inextricably tied to the dignity and autonomy of that patient. The NHPCO‘s Code of Ethics explains that patient confidentiality should be protected unless it poses a risk to the patient or others (McMahon 2003; NHCPO 1996). When a patient inquires about or requests PAS, the conflict between involving the family versus honoring patient confidentiality arises. A patient may want to exclude his/her family from discussions about and requests for PAS, which would fall under patient confidentiality, yet the exclusion of the family is also antithetical to the hospice philosophy. Campbell et al. (1995) point to this potential dilemma. Their concern is corroborated by the fact that Oregon‘s Death with Dignity Act mandates that the physician urge the patient to inform his/her family, but the patient is not legally required to do so. Finally, a patient‘s request for PAS reveals a third contradiction inherent in the hospice philosophy. Workers are supposed to collaborate with one another on the interdisciplinary hospice team and, as stated previously, honor patient confidentiality. Interdisciplinary collaboration, i.e., teamwork, is fundamental to the practice of hospice. Each member contributes her/his unique skills to provide holistic care for dying patients. However, if a patient requests PAS, given that it is illegal in every state but Oregon and Washington, researchers predict that hospice workers will feel unable to confer with one another on how to proceed (McMahon 2003). One study‘s findings supports this concern (Schwarz 2003). My study‘s participants from Crossings Hospice reiterated how common it is for patients and/or families to request euthanasia. Nurse Samantha explains: S: —We actually had a patient‘s family ask us to euthanize their mother. I mean, they came right out and œ“ G: —Wow, how did they say œ“ S: —Well, they didn‘t understand hospice, and they actually thought that‘s what we did.“
46 G: —Wow, so how did they ask for it?“ S: —They kept asking this weird question about ”When you gonna give it to her? When you gonna give it to her?‘ And finally we said, ”Give her what?‘ I don‘t understand what you‘re asking me.‘ Because they did it in a direct but indirect way where they weren‘t specific enough where we kept thinking we were misunderstanding what they were asking. And finally they were like, ”You know, the injection that will end her life.‘ Yeah, and I was like ”Well, hospice doesn‘t do that.‘ So we had to have a long conversation and they continued to look very confused, as if everything they ever believed about hospice was that‘s what they did, and they just couldn‘t believe that we wouldn‘t do this. So yeah, we‘ve had that.“ Samantha‘s anecdote illustrates the confusion that some patients and/or families may experience due to the public‘s misunderstanding of hospice. Because many people believe that hospice is a place one goes to die, some patients and/or families subsequently believe that if they request euthanasia, then their wishes will be understood, supported, and granted. This poses a difficult challenge for hospice workers, because hospice philosophy maintains that hospice seeks neither to hasten nor prolong death. In other words, hospice is not meant to serve as a means for euthanasia. If anything, hospice is meant to serve as an alternative to euthanasia. To summarize, so far I have explained how most of the general public incorrectly believes that hospice is a place one goes to die. This stereotype probably arises, at least in part, from the fact that hospice is indeed meant for patients who have received a terminal diagnosis. This misconception raises various challenges for hospice workers. Hospice workers are often frustrated that patients and their families receive hospice too late. Hospice in general, and Crossings Hospice in particular, offers a breadth of services that are meant to help patients and families throughout the entire process of dying and grieving. Enrolling in hospice in one‘s final days denies patients and families the chance to take advantage of the many services Crossings Hospice offers. Hospice workers also experience frustration because the public‘s misconception often becomes a self-fulfilling prophecy. In other words, hospice in fact does turn out to be a place where one goes to
47 die, precisely because some patients and families wait until the end of the disease process to enroll in hospice. Finally, the public‘s misconception poses for hospice workers dilemmas that are on the complete opposite ends of the spectrum. On one hand, some patients and/or families are afraid to accept pain medications such as morphine, because they worry that hospice will —kill“ the patient. On the other hand, some patients and families believe that one of the purposes of hospices is to take and honor requests for euthanasia. Since I have explained the challenges that arise from the misconception that hospice is a place one goes to die, now I discuss coping strategies my participants use to deal with these challenges. Three distinct strategies emerged from my interviews. Many hospice workers focus on educating their clients. Some hospice workers acquiesce to their clients. Finally, some hospice workers have —looked the other way.“ Coping Strategies Educating clients. The public‘s false belief that hospice is where one goes to die clearly poses many challenges for hospice workers. One challenge I have discussed is that hospice workers are frustrated that because of this misconception, some patients and families enroll in hospice too late to fully benefit from hospice‘s many services, and that this ironically can lead to the misconception becoming reality. Many participants in my study emphasized the need for the general public to be more educated and informed about hospice. In fact, numerous hospice workers thanked me either before or after the interview for choosing to do my dissertation about hospice. They expressed hope that somehow my dissertation would raise the public‘s awareness about what exactly hospice does, the many services hospice has to offer. One hospice worker who asked to remain anonymous articulated this hope best: —I don‘t know much about sociology, and I‘m not real sure what you‘ll finally end up writing in your report. But I do hope that people will read it and finally start to understand what exactly we do over here. I mean, no, we don‘t kill people. We help people. They don‘t have to wait to get hospice, you know? We have all sorts of stuff. They get medical care. We support them emotionally and if they want, we can do spiritual stuff too. And our therapists, they‘re absolutely wonderful. I‘ve seen the work they do, making patients more comfortable, and just giving patients and
48 their loved ones quality time together. That‘s what I want the public to know. And I really hope your dissertation helps get the word out.“ To be honest I was touched by the gratitude many of my participants voiced. At the same time, I did (and still do) feel a bit insecure that somehow this study would not adequately fulfill their desire to educate the general public. I told my participants I personally do hope that this project helps raise awareness of and understanding about hospice, and I truly meant that. I must admit that I have always respected hospice, and this project has deepened my respect for these people and the work they do. At the same time, I also tried to explain (and I am not sure how successful I was) that a dissertation is an academic exploration of a topic, and that my task is to contribute to sociology‘s understanding of the challenges that may arise from hospice work. I hope perhaps I can do justice to both. I have explained that the public‘s misconception about hospice leads some patients and/or families to reject, or at least be highly suspicious of, morphine and other pain medications. Many hospice workers emphasized the need for education, that people need to be aware of what exactly morphine does and does not do. Music therapist Bess firmly believes in educating patients and families: B: —I can remember certain times where the patient was like, ”I don‘t want morphine, no matter what.‘“ G: —Why not?“ B: —Because it might bring about dying. Which so many times I try to, although I‘m not the nurse, I try to remind them that it‘s not the morphine is killing them. So especially educating family œ so many times at that point they‘re [the patient] so comfortable, that they feel ok to go. It‘s not the morphine causing death, it‘s they are more comfortable. Or, a lot of times by the point we‘re using morphine, they are in that stage physically œ and the doctors can explain it a lot better than I can œ but œ I think a lot of it still comes down to education and really supporting the family and patient where they are.“ While some hospice workers emphasized the need for education about pain medications, even more participants expressed the need for more understanding about the
49 issue of euthanasia. Some hospice workers spoke at length about how hospice was never meant to provide euthanasia. These workers adamantly feel that patients and families need to be more educated about the hospice approach to care. Nurse Kim illustrates: —If they‘re like, ”I wanna die now,‘ then we‘ll say, ”We really can‘t give you a lot of morphine if you want to die now.‘ Or even sometimes families in inpatient will say, ”Can‘t you give them morphine every hour?‘ And we‘ll say, ”Well, they‘re not in pain, and they‘re not having shortness of breath, they‘re very comfortable, and we really don‘t want to overmedicate.‘ And we explain œ there‘s really a lot of education when it comes to incongruency of both what they want and what we want. We do try to explain a lot and educate, that hospice is not somebody who euthanizes.“ As I explained earlier, a central tenet of hospice philosophy is that hospice seeks to provide comfort care, and to neither postpone nor bring about death. Inherent in the hospice philosophy is a respect for the —sanctity of life,“ which Crossings Hospice as well as the NHPCO interprets as a prohibition against euthanasia. Kim‘s comments demonstrate her strong belief that patients and families need to understand that euthanasia is simply not an option within the realm of hospice practice. That is, Kim and other participants point to how they educate patients and families about hospice philosophy in general. Some hospice workers deal with the public‘s misconceptions about hospice by trying to educate patients and families about what hospice will and will not do. Another theme that arose from my interviews is that some hospice workers try to educate patients and families about the legal implications of euthanasia. That is, instead of framing euthanasia as something hospice philosophy itself prohibits, hospice workers emphasize to patients and families how euthanasia is against the law in most states. Social worker Ida recalls: I: —I had in the nursing home a patient who came in from the hospital and the patient wanted physician assisted suicide, and she had it written, the actual legal paper, and the doctor agreed with the patient but had to say
50 ”That would be fine, but our state does not allow that.‘ We‘ve had that, plenty of times.“ G: —And the doctor actually supported it, but couldn‘t do it because it‘s illegal, so what happened?“ I: —The doctor told the daughter, ”If that were legal here in our state then I would do it.‘ The doctor agrees with that philosophy. But because it‘s not legal in this state, we explained to the daughter, ”We can‘t do that, we‘re sorry.‘“ Ida‘s story illustrates how sometimes hospice workers place the blame on current laws rather than on the hospice philosophy. That is, some hospice workers attempt to educate patients and families about the legal implications of requesting assistance in dying. Her anecdote also illustrates how euthanasia‘s illegal status can pose a challenge for those hospice workers who in fact support physician assisted suicide. Although these workers may support a patient‘s and/or family‘s request in principle, the law (as well as NHPCO Code of Ethics) prohibits them from honoring that patient‘s and/or family‘s wishes. Some workers like Ida describe to patients and families the laws regarding euthanasia in a cut and dry manner. That is, assisted suicide is against the law and therefore hospice cannot do it. Other participants in my study spoke about how they talk about the law but also try to justify the law to patients and families. I asked music therapist Bess, —So, how do you reconcile that with the whole patient autonomy thing? That the patient doesn‘t want meds [medications] so you don‘t give it to them, but if they want assisted suicide, you can‘t do that . . . .“ Bess explains: —Oh, yeah. But there‘s a whole legal issue here we have to explain to them too. You know, another thing I tell them is, ”Think about your family. Number one, they lose benefits if there‘s a suicide, and number two, there‘s a huge stigma related to suicide, what are you doing to them? And I hear you saying you‘re worried about them and not wanting to be a burden, you do that, you‘re going to be a burden.‘ So really helping them
51 understand what are the implications here. Yes, I want you to be autonomous, but helping them understand the whole picture, their own whole picture. And really using those counseling skills. Helping them see the whole picture.“ Bess‘s comments made me realize that while some hospice workers simply cite the law and feel that the legal issue should be enough explanation for patients and families, other hospice workers œ like Bess œ appear compelled to justify the law, to make sense of it, to patients and families who request assisted suicide. When faced with a request for euthanasia, some hospice workers simply cite the law. Others attempt to explain and justify the law. Finally, another theme that emerged from my interviews is that some hospice workers turn the request for euthanasia back to the patient and/or family. By asking them why they are requesting it, the worker educates the client about what exactly hospice involves. I asked Nurse Linda what she does when she is faced with a request for euthanasia, and she replies: —What I tell them is ”Why? Why do you wanna die? Is your pain so bad that you don‘t want another day? Are you so weak that you just can‘t stand it?‘ Asking those ”why‘ questions. ”What‘s going on with you?‘ Are you having some spiritual stuff that‘s going on with you that we can help you with? Why do you want to end your life? If we can get you comfortable, why would you want to do that? Is it because you‘re so frustrated that you can‘t get out of bed? Well, you know what, that‘s understandable, but how can we make it better for you? Do you want to go to the beach? What you do you want to do that‘s . . . .‘ Asking that ”why‘ question, ”Why are you at that point?‘ . . . . I think sometimes if you ask it that way, ”How can we make things better?‘ That‘s where you get your answers.“ Instead of directly saying no, hospice doesn‘t do euthanasia, Linda and other hospice workers turn the request back to the patient and/or family. By asking the patient and/or family a bunch of questions, the worker in essence is teaching them about what hospice will and will not do. Simply citing the law or even trying to justify the law is a direct way of educating clients. On the other hand, workers like Linda seem to teach
52 clients in an indirect way, getting the patient and family to see on their own what hospice entails. In sum, it seems to me that my participants‘ attempts to educate patients and families about palliative medications and euthanasia are a problem-oriented coping strategy. That is, hospice workers try to deal with these challenges by addressing these issues directly. However, I learned from my participants‘ experiences that this strategy of educating clients can either be adaptive or maladaptive, depending on the circumstances. In some cases where participants explained the facts about morphine to their clients, the patient and family decided to accept it for pain relief. It may be that in those situations education is an adaptive coping strategy. That is, it is successful. The patient and family learn the facts and are able to receive true comfort care, the ultimate goal of hospice. However, some participants recalled situations in which education did not seem to sway their clients. The patient and/or family continued to refuse pain medications despite the worker‘s attempts to explain the facts. Because in those situations the patient died in substantial pain, it seems that education turned out to be a maladaptive strategy. The same can be said for the problem-oriented strategy of educating clients about euthanasia. In some situations the patient and family understood that euthanasia is not congruent with Crossings‘ philosophy and therefore accepted the situation. It appears that in these situations where the clients accept the worker‘s explanation, that the strategy of education seemed to be successful and therefore adaptive. On the other hand, participants described times where the patient and/or family remained in disbelief about and even frustrated with hospice‘s refusal to grant their request for assisted suicide. Despite the worker‘s attempt to educate, the patient and/or family did not fully understand and/or accept the denial of their request. In those cases it appears that education, while well-intentioned, turned out to be maladaptive because both worker and client remained dissatisfied with the results. Acquiescing to clients. The public‘s misconception that hospice is where one goes to die brings about many challenges for hospice workers, ranging from patients and/or families refusing (or being suspicious of) pain medications to patients and/or families requesting physician assisted suicide. Some hospice workers attempt to educate their clients about these issues, in both direct and indirect ways. On the other hand, some
53 of my participants explained how, in some situations, they ended up honoring the desires of their patients and families. In other words, these workers acquiesced to their clients. Many of my participants spoke of how patients and/or their families were highly suspicious of morphine and pain medications, fearing that hospice would —kill“ the patient. A theme that emerged from my interviews is that once the hospice worker had tried to educate the patient and/or family about the use of medication, if the patient and/or family still refused, then at that point the hospice worker would let go and follow the will of her/his clients. Earlier I described Nurse Margaret‘s story of a young woman who had end-stage breast cancer and ultimately died in a great deal of pain because her family refused the use of pain medication. To this day Margaret is saddened by witnessing her patient‘s pain, but she feels that honoring the family‘s wishes was the right thing to do: M: —I had to take my personal values apart, because it‘s not about me, and all I could do was provide the best I knew how to do, with what they were allowing.“ G: —Wow, that must have taken a lot of strength on your part.“ M: —It was very hard. But then you know what then Gina? I can go to my car and then I can cry. And I needed to, and that‘s ok. And the day I can‘t cry, or get upset œ But to me, we could have given her a better, in my opinion, a better death, without pain, without suffering . . . . But she trusted her family to make those decisions for her, so I could not violate them.“ Although Margaret was saddened by and disagreed with the family‘s decision to refuse pain medication, she felt strongly that she needed to respect their wishes and follow their lead. This is a theme that arose from countless interviews, the idea that —it‘s not about me, it‘s about them.“ Hospice workers often spoke of how they need to keep their own values and opinions out of the situation. They explained that the goal of hospice is to empower patients and families and to respect the decisions that they make for themselves. Social worker Tammy reiterates: G: —So back to the morphine thing, there is this perception, how do you get the family to see no that‘s not what you‘re doing [killing them]?“
54 T: —Well, first of all, we don‘t necessarily ”get‘ the family to realize. Again, I provide the information, and if they have the capacity to incorporate the information and shift their perspective they do, and if they don‘t then they don‘t get there. And they‘ll either continue to deny us the ability to use some of the things that provide comfort, or they change, their journey turns.“ Tammy, like many of my participants, emphasizes the importance of education. However, even the way she talks about education illustrates her belief that her role is to put the information out there for her patients and families, but then it is ultimately up to the patient and family to make the final decisions. Tammy says, —I‘m there to put out the information, facilitate, guide, even cajole, and then I gotta let go.“ If ultimately the patient and family decide against the use of pain medications, then Tammy feels her role is to support them in their decision and go along with it, even if she personally disagrees. I feel that —It‘s not about me; it‘s about them“ is both an integral part of hospice practice as well as a coping strategy. On one hand, —It‘s not about me; it‘s about them“ is directly in line with hospice philosophy‘s emphasis on patient autonomy. That is, workers empower patients to make their own decisions and have control over their own dying process. On the other hand, —It‘s not about me; it‘s about them“ also seems to be a coping strategy. First, hospice workers attempt to educate their clients. But once they make that attempt, then they —let go.“ When hospice workers ultimately acquiesce to their clients perhaps this is an emotion-oriented coping strategy. That is, once they put the information out there and then they let go, perhaps that is a way for them to deal with their job emotionally. In other words, it is no longer in their hands; it is in the hands of their clients. In addition to suspicion surrounding morphine and other pain medications, the public‘s misconception that one goes to hospice to die has led to some patients and/or their families requesting euthanasia. As I explained previously, many of my participants address these requests by educating patients and families in what the law and hospice say about this issue. Some of these workers indicated to me that they personally support a patient‘s right to request assisted suicide, but ultimately they still denied the request and attempted to justify their action (or inaction) to their clients. On the other hand, there
55 were a few hospice workers in my study who personally support assisted suicide and explained how they actually had helped honor their clients‘ request for it. These workers acquiesced to their clients despite legal as well as hospice prohibitions against euthanasia. Understandably, these workers would speak only on condition of anonymity; only one worker allowed me to audio record her/him at this point in our conversation. Here I quote from that one worker, who agreed I may use her/his words only if I do not include any identifying information about her/him: Worker: —Oh yes, I fully support physician assisted suicide. Frankly it bothers the hell out of me that here we are in hospice telling people, ”We‘re all about you and we‘ll do whatever you want to make this process as comfortable as possible,‘ but then they ask for this [euthanasia] and suddenly it‘s ”No.‘ I think it‘s a cop out. I think hospice needs to join most Americans who say ”We support physician assisted suicide.‘ So yes, I‘ve done it œ well, not actually done it, but I‘ve put the means there, you know?“ G: —Would you mind talking about that? What do you mean, you ”put the means there . . . .“ Worker: —Well, the patient‘s asked for more morphine, and I‘ve left them some dosages. And this is after they had asked for assisted suicide, and I had told them hospice doesn‘t do that œ But I gave them the morphine. And I wasn‘t stupid, I knew œ Well, I figured œ they were going to use it for that, you know? And I gave it to them. And their family knew, and they didn‘t want the patient to keep suffering either. And then the next day I get the call that the patient has died. So I knew.“ This hospice worker‘s story illustrates the personal dilemma that arises when a patient and/or family requests euthanasia. This hospice worker, along with a few others, brings up a point that other studies have raised as well œ the contradiction inherent within the hospice philosophy itself. On one hand, hospice philosophy emphasizes patient autonomy. That is, patients and families should have control over the process of dying and grieving. On the other hand, hospice philosophy also talks about the —sanctity of life,“ which mandates that hospice will neither hasten nor prolong death. These two
56 tenets within the hospice philosophy can be viewed as diametrically opposed when it comes to the issue of physician assisted suicide. On one hand, workers are supposed to honor the wishes of patients and their families. On the other hand, workers are prohibited from granting requests for euthanasia. A few of the participants in my study who support euthanasia point to this contradiction, and therefore attempt to address it by acquiescing to their clients. That is, a few have honored their clients‘ requests. In sum, I suggest that acquiescing to their clients is both a problem-oriented as well as an emotion-oriented coping strategy. It is problem-oriented in that —it‘s not about me; it‘s about them“ is an integral part of hospice practice. After trying to educate their clients, these workers (try to) set aside their own opinions and instead fulfill the wishes of their clients. This appears to be an adaptive coping strategy, because these workers strongly believe that they are rightfully honoring patient autonomy (central in hospice philosophy), even in cases (such as euthanasia) where the outcome is illegal and counter to Crossings‘ policies. In addition, I feel that acquiescing to clients also is an emotion- oriented coping strategy. Once these workers try to educate their clients, they let go. In other words, they (try to) deal with their own feelings (sadness, frustration, and so on) by reminding themselves that ultimately it is the choice of the client, because —it‘s not about me; it‘s about them.“ I feel that whether this emotion-oriented strategy is adaptive or maladaptive depends on how successful the worker is at managing her/his emotions. In cases where the worker seems at peace with, or at least able to deal with her/his feelings, it seems to me the strategy has worked and has proven adaptive. On the other hand, during some interviews I was struck by how emotionally affected the worker still appeared to be. In these cases where the worker seemed depressed or even plagued by a particular patient/family, it may be that this strategy of reminding oneself —it‘s not about me; it‘s about them“ ultimately did not work and was therefore maladaptive. Looking the other way. To deal with the challenges that arise from the misconception that hospice is a place one goes to die, some of my participants sought to educate patients and families. Other participants, often after educating, ultimately acquiesced to their clients and followed their wishes. A third approach, somewhere in the middle between these two, arose from my interviews. Some hospice workers deal with these challenges by looking the other way. Nurse Trudy explains:
57 T: —Anything that you do or choose to do on your own is your choice. I can‘t control your life. But I also can‘t compromise my values or my license or my spiritual life in order to comply with what you say or with what you want. So are there patients I thought have killed themselves? Most assuredly. Most assuredly.“ G: —Right, and earlier you were talking about patients using marijuana, and how you don‘t agree with that but you looked the other way œ— T: —Right.“ G: —So do you feel it‘s a similar thing with this, that maybe you kinda knew but looked the other way œ— T: —Oh yes, I do, I do. I just think I thought, ”Well, I just saw them on Thursday and they weren‘t dying. It‘s Saturday night and they‘re dead? Mmm. That‘s not kosher, you know? And then you ask them ”What happened? Did they have chest pain? Maybe they had a heart attack?‘ And it‘s ”I don‘t know, uhhh‘ and you‘re like ok, you killed them, you know? But we only usually supply like a two week supply of medication so I‘m like where did they, oh well, it‘s none of my business where got it from, it‘s over with. If they can live with that, it‘s really not my business, but if you‘re asking me to be involved in doing it, it can‘t be done. But it‘s really, I mean, you ask me what I think I‘ll tell you, but I‘m not telling you what to do.“ Trudy‘s comments illustrate how some hospice workers attempt to find a middle of the road approach. That is, these hospice workers do not flat out deny nor acquiesce to their clients‘ requests. Rather, they take the approach of —It‘s not about me, it‘s about them.“ That is, they inform, they educate, but then, even if they know œ or highly suspect œ that all is —not kosher,“ they look the other way. Because ultimately, and this is directly in line with hospice philosophy, it‘s about the patients and the families, not about the opinions or values of the hospice worker. Again, it seems that —looking the other way“ is an emotion-oriented coping strategy. That is, hospice workers attempt to remain true to their own personal beliefs by letting go and reminding themselves that ultimately, patients and families are/should be the ones in control. My participants who recalled
58 situations where they had looked the other way seemed content with, or at least resigned to, the outcome of the situation. Therefore I feel this strategy is generally an adaptive form of coping. To summarize, I have discussed some of the conflicts that may arise between hospice workers and the patients and families they serve. Because death is such a taboo subject in U.S. culture, some patients and families are in denial about the approaching death. This can lead to patients and families trying to —protect“ each other from the approaching death. Because death is taboo, many patients and families are uninformed about and unprepared for the processes of dying and grieving, and some continue to push for curative treatments. Many of my participants emphasized their role in having to educate clients about these issues. Furthermore, because the public falsely believes that hospice is simply a place one goes to die, many workers voiced their frustration with patients and families enrolling hospice too late and that leading to a self-fulfilling prophecy. This misconception also raises dilemmas for hospice workers when some patients and/or families refuse pain medications, while other patients and/or families request euthanasia. The hospice workers in my study attempt to deal with these challenges by educating clients, sometimes acquiescing to clients, or looking the other way. I turn now to other conflicts that may arise between hospice workers and their clients. Some of my participants spoke of how differences between themselves and patients and families can lead to conflicts. Specifically the issues that arose from my interviews involve culture, religion, and patients‘ mental condition.
Other Possible Sources of Conflict Culture and Religion Hospice workers are expected to serve patients and their families, yet this can become difficult when worker and client come from different backgrounds. Studies reveal the possibility of clashes between a medical practitioner and her/his client. For example, Adelman and colleagues (1992) point out that miscommunications may arise from the doctor-patient interaction for various reasons. First, the physician‘s assumed- superior medical knowledge creates a gap between her/him and the patient. Second, the physician and patient constitute a heterophilic dyad œ in other words, the doctor and
59 his/her patient come from different worlds (Rogers and Bhowmik 1970). Many times a physician and patient must traverse a gap between social class, gender, and /or race- ethnicity. Third, the physician will offer medical explanations which differ often from lay reasoning. While the physician speaks with the —voice of medicine,“ the patient talks with the —voice of the lifeworld“ (Mishler 1984: 14). Both the physician‘s voice of medicine and the patient‘s voice of the lifeworld are necessary to address an illness holistically. However, the physician‘s voice of medicine usually drowns out the patient‘s voice of the lifeworld, because many physicians consider patient input to be subjective and subsequently unreliable. Differences in cultural as well as spiritual/religious beliefs between hospice workers and their clients often arise, making it difficult at times for hospice workers to serve patients and their families without judgment or reservation. Nurse Margaret explains how culture can play a role: —I personally have had more of a situation where the family and I disagree. In fact, I was just asked by a nurse to go out with her, and that‘s part of what I do in clinical support, a nurse is providing care for a patient right now, the patient speaks French, so there‘s a language barrier there. And the son is the primary caregiver. The patient has a wound, and it‘s painful when the dressing needs to be changed. The nurse wants to medicate the patient, but the son says she doesn‘t need any medication, she‘s just fine. When we ask the patient ”What do you need,‘ she looks up at the son, she won‘t answer us, she‘ll immediately look to her son. Part of it is cultural, I believe, she defers her decisions to her adult son. She‘s clearly uncomfortable when the care is being provided, it‘s very challenging. It was challenging for me, just meeting her on that first visit. Basically if the patient œ and the nurse will ask the patient and she documents to the son, she‘ll tell the son, ”I‘ve asked your mom, and she does acknowledge that it doesn‘t feel good, may I give her something?‘ And right in front of her he‘ll say no. Well, ok, the patient says it‘s uncomfortable and she‘s [the nurse] got the son and the patient in the room together, ”Would you like
60 for me to give you something for the pain?‘ She looks at the son. That‘s challenging.“ Margaret‘s story illustrates how differences in culture can pose a dilemma for hospice workers. On one hand, hospice philosophy emphasizes comfort care. That is, hospice workers strive to make the patient‘s dying process as pain-free as possible. On the other hand, we see in Margaret‘s story how the patient, probably because of her culture, defaults to her son, which results in the patient remaining in pain. While hospice strives to provide palliation, hospice philosophy also requires workers to respect and honor the cultural beliefs and traditions of their diverse clientele. We can see from Margaret‘s story that sometimes these ideals within the hospice philosophy may clash due to cultural issues. Hospice workers often face challenging situations when a patient‘s and/or family‘s religious beliefs differ from those of the hospice worker. Social worker Ida recalls: —In the nursing home I had a lady in her 40s, breast cancer, alert and oriented, nothing wrong with her mentally. And she believed that by having faith in god, in her religion, that she was going to be healed, and she believed in angels and miracles, and a miracle was going to happen, and she was going to be healed. And I remember talking to her daughter about that, but I would never argue with the patient about that.“ We can see from Ida‘s anecdote that she did not agree with the patient‘s belief that a miracle would happen and god would cure her cancer. As stated previously, hospice philosophy calls upon workers to respect the beliefs of their diverse clientele. On the other hand, we have seen earlier how denial of one‘s impending death can pose challenges for the hospice worker. The patient in Ida‘s story seems to be placing so much faith in her religious beliefs that perhaps she is in denial, at least to some extent, about her impending death. However, Ida did not feel it was her place to tell the patient her own point of view. This is yet another example of hospice workers trying to honor the hospice tradition of serving patients and families without judgment or reservation.
61 Mental Condition of Patient We have seen how cultural background and also religious beliefs may prove challenging to hospice workers, who try to strike a delicate balance between providing care and guidance through the dying process without infringing upon the cultural and/or religious beliefs of the patients and families. In addition to culture and religion, another theme that arose from my interviews is how, at times, the mental condition of the patient can prove challenging to hospice workers. Integrative therapist Mike recalls a situation that makes him laugh (and me too) to this day: —I had this lady, am I allowed to say this? I had this lady at an ALF, assisted living facility, 90-something years old. I go in there, it‘s kind of dark, all you see is the shadow of her in a rocking chair, this little old lady watching T.V., and the T.V. light‘s on her, and she‘s doing a breathing thing. So the caregiver opens the door and says {whispers} ”I don‘t know if she‘s in the mood for this.‘ So I say ”Well, that‘s ok, I‘ll assess it, and we‘ll see, if she‘s not, that‘s ok.‘ So she‘s looking at me, she‘s a little old lady, and I get right in her face and I say, ”Hi, Miss so and so, my name is œ” ”{yelling} Get the fuck outta here!‘ And I said, ”Excuse me, my name is œ” ”{yelling} I don‘t give a shit what your name is!‘ So I look over and the girl‘s laughing hysterically in the corner, so then I said, ”Well, I just wanted to see if you wanted a massage œ” ”{yelling} I said get the fuck outta here!‘ And she looks like she‘s gonna kill me! So I said, being the idiot that I am, I said, ”So does this mean no? You don‘t want?‘ ”{yelling} No! Get out!‘ So meanwhile the caregiver‘s laughing hysterically and I say ”Ok.‘ And so I call up ”I don‘t think she wants me.‘ ”Well, give her another chance.‘ I said, ”Ok, I‘ll go back.‘ So next time, I went back like two days later, she‘s in bed, and she‘s like ”Hi, great, good to see you again!‘ Like a totally different person. ”Oh, massage, great!‘ So you just never know.“ Mike‘s story (amusing as it is) illustrates an important point. Sometimes a patient‘s mental condition can prove unpredictable for the hospice worker, who may be
62 unsure of what to expect and/or how to proceed. A challenge for hospice workers, especially when serving patients who may be confused or incapacitated by dementia or some other mental condition, lies in being prepared for precisely the unexpected. To summarize I have explained how sometimes conflicts may arise between hospice workers and their clients due to differences in cultural or religious beliefs. Because at times hospice workers are dealing with patients who may have a compromised mental state, these workers also must be prepared for the unexpected. Now I turn to discuss my participants‘ primary coping strategy when dealing with these challenges. They remind themselves, constantly, —It‘s not about me; it‘s about them.“ Coping Strategies —It‘s not about me; it‘s about them“. Hospice workers serve a diverse clientele. Patients and families come from a variety of cultural backgrounds, and they hold different religious beliefs as well. Furthermore, some patients, due to age and/or their disease process, appear confused, suffer from dementia, and so on. When I asked my participants how they deal with these challenges, the overwhelming response was —It‘s not about me; it‘s about them.“ As I listened to my participants stories, I began to understand what they meant by that phrase. —It‘s not about me; it‘s about them“ means that hospice workers are not supposed to impose their own beliefs, opinions, values, etc. on their patients and families. Rather, they are supposed to serve their clients without judgment or reservation. From my interviews I also began to realize that —it‘s not about me; it‘s about them“ has two different implications for how hospice workers proceed in these challenging situations. On one hand, some hospice workers remind themselves to leave themselves out of it. In other words, even when the hospice worker disagrees with the patient and/or family, s/he keeps her/himself out of it and goes along with what that patient and family want, believe, etc. On the other hand, some hospice workers remind themselves to start where their clients are at. This means that the hospice worker tries to practice creativity and flexibility. In other words, the hospice worker tries to figure out a way of getting the job done within the cultural/religious/mental framework of that particular patient and/or family. Earlier I recalled social worker Ida‘s story of a woman dying of breast cancer. This woman had so much faith in her religion that she firmly believed a miracle was
63 going to take place and she would be healed. Some people might become frustrated in that situation, believing that the woman is in denial about her approaching death. However, Ida kept her feelings to herself, —I would never argue with the patient about that.“ Ida makes the conscious decision to leave herself out of it and try to support the patient from where the patient is at. While sometimes hospice workers try to leave themselves out of it, other times hospice workers feel it is their responsibility to look for creative ways to get the job done that will still gel with the beliefs and values of their clients. Nurse Trudy recalls: —I remember one time we had, can‘t remember the nationality, I think it was Haitian, but there was a lot of voodoo connected to it and everything. They would not accept medicine either, and I can‘t remember particularly what it was because it wasn‘t my patient. But we were conferencing it. ”What are we gonna do, we gotta force this person to do this‘ and I said —Hey wait a minute, wait a minute. You can‘t force her to do anything, this is not what this is about.‘ And I made the joke and it was to kind of break the tension and everything and I said ”Find out what she wants, maybe she‘ll let you put a chicken in it, I don‘t know!‘ {laughing} Find out what she would accept, not yelling at her for what she won‘t accept. And I was being funny but I was like look, there‘s something in that culture that she‘ll let us do that we could do. We just have to figure out what that is. That‘s our job. You know, it‘s real easy for us to walk in the door and say ”This is what you have to do.‘ That‘s not what it‘s about! It‘s about what they want to do.“ Trudy‘s story illustrates how some hospice workers feel it‘s their responsibility, their job in fact, to find ways of getting things done in a manner that still respects and keeps with the cultural and/or religious beliefs of their patients and families. Earlier Nurse Margaret described how a mother who clearly was in pain would default to her son, who refused to accept pain medications for her. Like Trudy, Margaret also tries to be creative and come up with alternatives that still fit within the bounds set by the family: —It‘s particularly uncomfortable when they change the dressing. So I said, ”Ok, let‘s come up with a way where you only have to change this thing
64 but maybe twice a week, instead of four, five times a week.‘ So we actually came up with something we made. Instead of using a prepackaged dressing, we made something that could be utilized longer.“ Margaret‘s solution was to be flexible and find a creative, innovative way of addressing the patient‘s pain while keeping in line with their cultural practice of having the son make her decisions. In sum, —It‘s not about me; it‘s about them“ means that hospice workers must constantly remind themselves that is it their job to respect and honor the people they serve, even if and when they disagree with those people. Some workers take that to mean they should keep quiet (at least in some situations) and defer to their clients and support them in their wishes and/or beliefs. On the other hand, other workers take that to mean they should be flexible and try to come up with creative ways to get the job done in a manner that will still be acceptable to that patient and/or family. As I said earlier, perhaps —It‘s not about me; it‘s about them“ is both a problem-oriented as well as an emotion-oriented coping strategy. It is problem-oriented in that it is directly in line with hospice practice of empowering patients and families. It is also problem-oriented when hospice workers attempt to find creative ways of working within the cultural/religious/ mental framework of the patient and/or family. However, it is also emotion-oriented in that it allows hospice workers to emotionally —let go“ of the situation.
Conclusion In this chapter I have explored some of the conflicts that may arise between hospice workers and their clients. One challenge hospice workers face is the taboo nature of death in the U.S. Because death is such an off-limits (or at least highly undesirable) topic, some patients and/or families are in denial about the patient‘s impending death. Others try to protect one another by feigning ignorance about the impending death. The forbidden nature of death contributes to patients and families being uninformed about and unprepared for the dying and grieving process, and many patients and families push for curative treatments, which is not in line with hospice philosophy. Hospice workers often address the challenge of death as taboo by attempting to educate their clients, which
65 appears to be a problem-oriented coping strategy. This ultimately proves adaptive or maladaptive depending on how successful it is. In addition to the taboo nature of death, a second major challenge hospice workers face is the public‘s misconception that hospice is a place where one goes to die. Because of this false belief, many patients and families enroll in hospice near the end of the disease process, which can make it appear that people do go to hospice to die. This misconception leads to two completely opposite conflicts: the fear that hospice will perform euthanasia (through the use of pain medications such as morphine) versus the (false) belief that hospice will fulfill requests for euthanasia. Hospice workers often address this challenging misconception that hospice is a place one goes to die in three ways. Some attempt to educate their clients; some (often after attempting to educate) acquiesce to their clients; some look the other way. Again, educating clients appears problem-oriented. On the other hand, ultimately submitting to their clients‘ requests or simply looking the other way seem to me more emotion-oriented strategies where the hospice worker is able to let go of the situation. Finally, a third major challenge hospice workers face is differences between themselves and their clients. These differences may stem from culture, religion, or mental condition such as dementia. In these situations many hospice workers constantly remind themselves —it‘s not about me; it‘s about them.“ I feel this is both a problem- oriented as well as emotion-oriented coping strategy. This mantra is problem-oriented in that it is directly in line with hospice practice of serving patients and families on their terms, and some hospice workers practice flexibility to find creative ways to meet their clients where they are at. —It‘s not about me; it‘s about them“ also may be emotion- oriented in that it allows hospice workers to let go of the situation and realize that the clients are the ones ultimately in control. In sum, a myriad of conflicts may arise between a hospice worker and the patient/family s/he is serving. No matter what the source of the conflict œ U.S. cultural attitudes toward death, misconceptions about hospice, or differences between worker and client œ the participants in my study vehemently maintained that it was ultimately their responsibility/duty to work together with patients and families to address these issues.
66 CHAPTER 5 HOSPICE BECOMING MORE LIKE A BUSINESS
Chapter 5 reports on my participants‘ discussion of how hospice is becoming more like a business. This trend is not only characteristic of Crossings Hospice in particular but of U.S. hospice practice in general. Three themes emerged from my interviews. First, Crossings Hospice is undergoing processes of expansion. Expansion poses numerous challenges, including workers experiencing a heavier workload as well as adjusting to work in different settings. Second, Crossings Hospice has implemented a specialized division of labor, which has led some participants to feel alienated from the hospice process. This division of labor also leads to challenges within the Interdisciplinary Team, where roles often overlap and the divisions between them become blurred. Division of labor also has consequences for not only workers but also patients and families. Third, Crossings Hospice now focuses on cost containment, in large part due to the role of government reimbursement for hospice services.
Expansion Studies find that health care in the U.S. has shifted from providing a service to offering health care to those who can pay. This change from —a concern with benevolence to a concern with economics“ (Wallace and Estes 1996: 489) has led to the healthcare industry becoming increasingly about marketing and running more like a business (Imershein and Estes 1996; Imershein and Rond 1989; Imershein et al. 1992; Light 2004; May et al. 1996; Relman 1980; Starr 1982; Stone 1997; Ward and Gordon 2006). In order to compete in this changing health care arena, U.S. hospices have been greatly expanding their client base (Ward and Gordon 2006). Like many hospices in the U.S., Crossings Hospice has been and continues to engage in processes of expansion, which involves three specific tactics. First, Crossings Hospice has increased the number of patients being served. This poses a challenge for my study‘s participants, who often complained about what I refer to as quantitative role overload. Second, Crossings Hospice has shifted to a more open-access orientation. That is, this particular hospice organization accepts patients who are still receiving treatments
67 such as chemotherapy and dialysis. This poses a challenge for my study‘s participants, who spoke of what I refer to as qualitative role overload. Finally, workers in Crossings Hospice, like many hospice workers in general, interact with patients and families in a variety of settings. My study‘s participants spoke of the challenges œ both obvious and subtle œ of serving their clients in different environments. Quantitative Role Overload Like many U.S. hospices, Crossings Hospice has increased the number of patients being served. Many of my study‘s participants explained how this organization is trying more and more to —sell hospice.“ One marketing technique is that Crossings Hospice advertises more frequently in the media. Since starting this project I personally have noticed more commercials on television for this hospice organization. And music therapist Bess recalled how one day she was driving to an appointment and she heard Crossings advertised in a commercial during her favorite radio show and was like —Wow, that‘s my hospice!“
Another marketing technique is that Crossings Hospice often encourages/ pressures workers to —sell hospice“ to patients and families not yet enrolled in hospice. Social worker Ida explains:
I: —For the most part once the family‘s been referred and they‘ve agreed to meet with hospice in order to admit the person, usually they know already what hospice is and agree to hospice, so it‘s not like I have to go and sell hospice, so you‘re just letting them know what the services are, so you don‘t have to be too aggressive in the marketing part of it.“
G: —Sounds like you‘re grateful you don‘t personally have to sell.“
I: —It‘s hard. It depends on the patient. If it was my parent and she‘s 95 then yeah, I don‘t mind hospice coming in, she‘s at end stage Alzheimer‘s and I need extra help then yeah sure I don‘t mind an extra CNA to come help. But in other instances it‘s hard. You have young people who have cancer and they don‘t want to go through chemo because it makes them sick, but if they went through it they‘d probably still have a chance, and so
68 to try to sell a family on hospice then, that‘s hard. And other people here have to do that and I‘m glad I really don‘t.“
Ida‘s comments demonstrate how Crossings Hospice is attempting to expand its client base by having some workers sell hospice to patients and families. It seems to me that Ida appears grateful that she is usually not put in that position.
Quantitative role overload occurs when workers have too little time to complete their tasks because of the number of tasks (Chapter 2). Many of my study‘s participants are experiencing quantitative role overload, because Crossings Hospice continues to enroll increasing numbers of patients. This increase in the number of patients enrolled is a purposive means of expansion used by Crossings Hospice. Nurse Samantha explained that at any given time Crossings Hospice serves around 1100 patients total and prides itself on being one of the largest hospice organizations in the country. In order to continue to increase the number of patients enrolled, Crossings Hospice both rewards and punishes its workers. Many participants who spoke about this emphasis on enrolling more and more patients would do so only on condition of anonymity, for fear of being labeled a —troublemaker,“ punished, or even fired by Crossings Hospice for their candor. A few workers even made me switch off my audio recorder while they spoke specifically about their organization‘s focus on expansion, because they were so worried about their voice being on record. One worker, who agreed to be recorded and quoted but only if guaranteed anonymity, gave specific examples of the types of rewards Crossings Hospices uses to increase patient enrollment:
—I love my work, and it‘s hard work, but I can‘t imagine what else I would do. And yet when we go into the meetings, you know, very corporate, and so anyway, we get a business card every week if we have made our numbers. Numbers! They‘re not numbers, they‘re people! And then we get to pick from what kind of candy would you like. Occasionally the hospice here‘ll throw a party, and one party they did was ”We have our, our census went up to 1000!‘ And the way it was interpreted a lot here was ”Oh, good, we‘re celebrating!‘ Like, my grandmother had been on
69 hospice with you, gee, was she the 1000th patient who put you over so yay we‘re gonna have this big celebration because somebody died!“
This participant cites two specific examples of how Crossings Hospice encourages workers to increase patient enrollment œ the use of the —candy box“ and also the throwing of a party. Regarding the candy box, some workers explained how their supervisors have a box of candy in their office and if/when a hospice worker —makes their numbers,“ i.e., sees their required (or, ideally, higher) number of patients in that particular week, then the worker gets to choose a type of candy from the box as a reward. A few of the workers who spoke to me about the use of the candy box sounded insulted by this tactic; they referred to it as —childlike,“ —condescending,“ and —stupid.“ In addition to the candy box, this participant among others also explained how the organization would throw a party when it hit a certain census, i.e., number of patients enrolled. Again, the workers who spoke to me about these parties sounded offended and even appalled by this tactic, saying that if it were their family member who was the patient who —put [the organization] over, how sick would that be?!“
This participant‘s comments also illustrate how Crossings Hospice uses the language of —numbers“ to talk about/refer to patients. S/he rightfully points out, —They‘re not numbers, they‘re people!“ However, this emphasis on quantitative measurement is a common tactic organizations use to compete in a health care industry that is increasingly bureaucratized and for-profit. In the U.S., health care organizations often compete to be seen as legitimate by claiming predictable, measurable health outcomes. According to neo-institutional theory (Powell and DiMaggio 1991), institutional environments consist of organizations that are validated more by their form than their output. Institutional environments lack quantifiable, empirically measurable outputs. On the other hand, technical environments consist of organizations that are judged more by their output. Technical environments produce results/outputs that are quantifiable and empirically measurable. U.S. society generally views the quantifiable outcomes of technical environments as more —scientific“ and therefore more legitimate (Powell and DiMaggio 1991). As a result, more and more health care organizations are claiming to be technical environments by using the language of numbers to refer to their patients.
70 In addition to rewarding hospice workers who —make their numbers,“ Crossings Hospice also punishes workers who do not. My study‘s participants explained how if they fail to meet their required number of patient visits in, for example, a week, they can get —written up“ and even —threatened with being fired.“ Or, sometimes the organization does not need to fire the worker, s/he will quit because of the pressure to see more and more patients. One worker who wanted to remain anonymous complained:
Worker: —It‘s about numbers, it‘s about admissions. It‘s about being the biggest hospice. It‘s about making inroads into, changing things, it‘s about being recognized as the largest hospice in the U.S. I don‘t like the focus on the numbers, but it is. Get these patients in. And they really put a lot of pressure on the admission nurses, lots of pressure. We‘ve lost some really good people. And it‘s not an easy job. And if you don‘t produce, you‘re out. The end.“
G: —You‘ve seen that?“
Worker: —Oh yeah, I‘ve seen it. And I get frustrated at the ”Hey, we just hit this‘ and ”Yay yay yay,‘ you know? And yet if you have somebody who‘s not ready for hospice and they wanna revoke, you‘ve gotta call this one, you‘ve gotta tell that one, and so it‘s just jumping through these hoops to please everybody because the focus is on the numbers. I know I sat through a meeting in which they talked about the numbers, they talked about the money œ I walked out of the meeting and said, ”You know what I‘d like for them to talk about? If they‘re gonna talk about numbers, what is the nurse to patient ratio? What is the social work to patient ratio? We‘ve got a thousand patients but we haven‘t hired a whole lot more staff.“
This participant‘s comments illustrate the mounting pressure on hospice workers to enroll and visit more and more patients, and how Crossings Hospice has either fired workers or workers have quit due to this pressure. Her/his comments regarding the ratio of hospice workers to patients further emphasize their experience of quantitative role overload. That is, Crossings Hospice is serving increasing numbers of patients, but the
71 organization has not systematically hired more workers in order to buffer the effects of this increased workload. The result is quantitative role overload œ workers experience stress when they have too many competing tasks to fulfill in a limited amount of time. My study‘s participants seem to reiterate what other studies find, that many hospice workers feel that management does not appreciate their increased workloads nor help them deal with them (DiTullio and MacDonald 1999; Mesler 1995).
This worker also criticizes Crossings Hospice‘s growing emphasis on numbers. First, s/he reiterates the sentiment of the previous worker, that Crossings‘ referring to patients as —numbers“ and emphasizing financial matters is disturbing and offensive. Second, this worker explains how Crossings Hospice looks negatively upon and therefore tries to discourage situations where patients and/or families revoke œ i.e., de-enroll out of hospice. I personally witnessed this attitude in a meeting I was granted permission to attend. I sat in on this meeting with the goal of recruiting more participants to interview. One thing that struck me at this meeting was their discussion of two different patients who had revoked hospice services. In each case, the hospice worker who had taken care of the revocation was questioned at length, and it seemed to me these workers were forced to defend themselves. From my point of view they appeared to be embarrassed or, at the very least, put on the spot.
To summarize, workers at Crossings Hospice are required to serve more and more patients. This organization uses both rewards and punishments to encourage/pressure workers to —make their numbers“ and also to discourage patients and families from revoking hospice services. The organization‘s tactics of both positive and negative reinforcement appear to insult, intimidate, and even offend many of the workers in my study. However, because Crossings Hospice is representative of what many hospices are doing in the U.S. in order to compete in an increasingly bureaucratized and for-profit health care arena, I doubt that this trend will reverse. In fact, I believe œ as many of my study‘s participants believe œ that this trend will only become more pronounced with time.
72 Qualitative Role Overload Workers at Crossings Hospice are experiencing quantitative role overload, because they are being asked/pressured to see more and more patients in a limited amount of time. However, another type of stress in work is qualitative role overload. Workers experience qualitative role overload when they have too little time to complete their work because of the complexity of their tasks (Chapter 2). Many of my study‘s participants are experiencing qualitative role overload, because they are seeing more higher-acuity cases. This is happening because Crossings Hospice is expanding its client base by shifting to a more open-access orientation. That is, this organization accepts patients who are still receiving treatments such as chemotherapy and dialysis and who are —full code,“ meaning they have not signed a Do Not Resuscitate (DNR) order. Nurse Margaret explains: M: —We‘re seeing more and more patients and also seeing the acuity, the care needs of the patients, being so much greater. This isn‘t just a matter of stroking their arm and singing kumbaya, I mean, these patients are coming to us on intravenous therapies, they‘re coming to us on chest tubes, things that we didn‘t see formerly in hospice care. G: —And why do you think you‘re seeing it now?“ M: —With a more open-access approach, any patient that has the life- limiting diagnosis of six months of less, they will be certified terminal by a physician, can be seen in our care. And if that means that if the patient or family desires these additional œ if they‘re palliative therapies and not meant for cure, we‘re gonna provide them, so we get into more of the high tech realm. A patient may be on a vent and be at home, if the family is comfortable with that. That doesn‘t necessarily mean that our nurses know how to take care of that vent, they‘re going to have to find out, because that‘s what the acuity level is of their patient.“ Margaret‘s comments reveal how workers at Crossings Hospice are experiencing qualitative role overload. As Margaret explains, workers at Crossings are seeing higher acuity patients, meaning that the level of care these patients require is becoming increasingly complex. Qualitative role overload means that workers feel overloaded and stressed when they must perform more complicated tasks still within a finite amount of
73 time. Margaret points out how this is happening in some cases, where a nurse who may have never taken care of a vent now has to learn how to perform that task. Margaret‘s comments highlight how Crossings Hospice is expanding its client base by shifting to a more open-access approach. I use the word —shifting“ because, as Margaret points out, this is definitely a shift for hospice. As I explained in Chapter 2, hospice focuses on care rather than cure. That is, hospice services are meant for people whose illness no longer responds to traditionally aggressive/curative treatments. When a patient and family enroll in hospice, the understanding traditionally has been that the patient and family will forgo any more curative treatments and instead will focus on palliative (comfort) care. However, with more U.S. hospices such as Crossings taking a more open-access approach in order to expand, workers are serving increasing numbers of patients who are receiving these types of treatments. However, note the distinction that Margaret makes. Treatments are acceptable only if they are for palliative purposes. That is, treatments are deemed appropriate only if they are meant to provide the patient comfort care. If, however, the treatment is meant to be curative, then that is deemed inappropriate and out of the realm of hospice care. While at first glance this distinction between care versus cure may appear clear-cut, I discuss later that this is often not the case. A few of my study‘s participants spoke favorably about Crossings Hospice‘s increasingly open-access approach, praising it as a way of making hospice available to a wider audience. Social worker Wilma talks about much Crossings expanded while she was gone: —Now we have over one thousand patients, and I could show you our telephone directory, there‘s so many teams I have no idea œ When I came back six years later, we had grown, it was amazing. I had a really difficult time with all the changes, I was very angry. I was younger, more of a hothead than I am now {laughing}, very passionate about what I was doing and how dare they go and take all our good hospice employees away, because I bet you like fifty percent of them quit, a lot of them, a lot of wonderful people. Because it was so difficult to see that business side. Now I look at see that the CEO is probably right, we‘d probably still be
74 out there, but we wouldn‘t be providing the services we‘re able to provide. The fact that we‘re so large enables us to actually do more for our patients and families because you have someone who has a special medical need, before we wouldn‘t have had the funding now we do have the money so say someone goes into hospice but they still want to continue their transfusions, we can do that. If there‘s a certain need they have, we‘ll try to meet it. And open-access is great, because that‘s really part of the process of accepting what is the diagnosis and the prognosis.“ Wilma‘s comments reveal her struggle to come to terms with Crossings Hospice‘s increasingly business mentality and subsequent expansion. She does point out some of the consequences of this expansion, such as workers quitting under the increased pressure. However, it seems to me that overall Wilma has come to appreciate Crossings‘ shift in orientation to a more open-access approach. She seems to feel that allowing and even providing treatments such as transfusions ultimately makes hospice available to a greater number of patients and families, an outcome she feels is worth the new approach. While some workers like Wilma seem to view Crossings‘ shift in orientation favorably, many of my study‘s participants spoke more cautiously and at times even critically about this emphasis on open-access. Nurse Trudy expresses her regrets and misgivings: T: —It‘s very scary. It‘s not about the patient anymore, the whole medical profession is not about the patient. It‘s, I don‘t know, it‘s so much about negative things, but we have to work hard to keep the focus on the patient. And I hear a lot of talk about that, but I don‘t always see that in reality. It‘s true that hospice is now paying for a lot of things that they didn‘t in the past.“ G: —Such as?“ T: —Blood transfusions, or taking people who are on a respirator, or giving dialysis for a short time, all kinds of modalities that were not possible before for them to do. Our organization is very aggressive in doing that. I‘m not always sure that‘s to the patient‘s benefit . . . . Like artificial nutrition can sometimes cause an awful lot of diarrhea and vomiting and
75 nausea and a lot of increased pain because cancer will feed on that. Grows faster. So many times when they stop some of that stuff they go, ”Wow, I haven‘t had nausea in two days.‘ Yeah, you‘re gonna die, but why not die not nauseous? It‘s a sad thing for me, I don‘t think a lot of people have been in it [hospice work] as long as I have to see those changes, so to them everything is great and wonderful, and for me it‘s really sad.“ Trudy‘s comments emphasize, as I said earlier, that this shift to a more open- access approach is indeed a significant shift for hospice. While hospice traditionally has provided comfort care and required patients to forgo aggressive treatments, more hospices like Crossings are accepting and providing these kinds of treatments as long as the intent is palliation. Trudy clearly has reservations about this more open-access approach, because her experience as a nurse has taught her that there are times when these types of treatments actually may cause the patient more discomfort rather than less. Although many of my participants voiced similar concerns, I believe that this open- access approach will become only more pronounced with time, because it is a purposive strategy of this organization (and others) to expand their client base to remain competitive in the current health care arena. Hospice Work in Different Settings As I explained in Chapter 2, hospice workers serve their patients and families in a variety of settings, including hospice organizations‘ inpatient units, hospital wards, skilled nursing facilities (i.e., nursing homes), and assisted living facilities. In the U.S. most patients receive hospice care in their own homes. While hospice traditionally has served patients and families in various settings, some of my study‘s participants view this practice as yet another tactic their organization uses to expand its client base. One worker, speaking on condition of anonymity, says: Worker: —Yeah, it gets crazy sometimes because we go different places. Like seeing patients in nursing homes but also going to patients‘ private homes too. That‘s a lot of work.“ G: —Right, although hospice has always done that, right? Served patients and families in different settings?“
76 Worker: —Yeah, they do. But you know it‘s a way of getting more patients, right? It‘s about selling hospice. Go to nursing homes, go to ALFs [assisted living facilities], go to hospitals, and sell yourself. [Crossings Hospice] is real aggressive about enrolling patients and œ come on, going all over the place œ just lets‘em make more money and get more national recognition, which they‘re all about.“ Historically hospice practice in the U.S. has provided services for patients and families in a multitude of settings (Chapter 2). However, this worker‘s comments reveals how s/he believes that it is also a purposive strategy on the part of Crossings to expand its client base. Many of my study‘s participants repeatedly described the challenges of working in different settings. From my interviews I learned that these participants view their having to work in various environments as especially characteristic of Crossings, rather than a part of hospice practice in general. These participants seem to feel that expansion into various settings is a purposeful tactic of Crossings Hospice to gain more of a national reputation and make more money. The words of my participants, and also their tone of voice during parts of the interview, lead me to think that many of these workers are highly critical of (and some even resentful toward) Crossings‘ trend toward expansion and emphasis on financial matters. Interacting with patients and families in a variety of settings allows hospices like Crossings to serve more and more patients, which is increasingly important in such a highly competitive health care arena. However, each setting also poses its own unique dynamics and challenges. My study‘s participants discussed some of the differences that arise when working in such a variety of settings. Most patients and families receive hospice services in their private homes, and most of my study‘s participants described themselves as —guests“ when entering patients‘ homes. I began to understand that being a —guest“ means that when a hospice worker enters a patient‘s home, s/he feels especially compelled to show that patient and family the utmost respect, even in situations when s/he disagrees with/is uncomfortable with something in that situation. Workers often spoke of how the home is —the patient‘s turf, and you respect that, it‘s not your place to judge or mess with that.“
77 Many workers also described working in patients‘ homes as —unpredictable.“ This resonates with previous studies like Mesler (1995) that find that unpredictability in patients‘ private residences is a common challenge for hospice workers. From my interviews I began to understand that —unpredictable“ sometimes refers to the home‘s physical conditions. Many workers gave examples of how homes are unpredictable in that —you never know what you‘ll find when you walk in.“ They described homes ranging from —richey rich fancy“ to —falling apart and disgusting,“ with some families having —dogs that shit all over the living room floor and then come wanna sit in your lap while you‘re trying to talk to the patient.“ Social worker Dara describes in detail the physical condition of one patient‘s home: —We had a woman on hospice, she lived in this dilapidated trailer in [poor area], I mean there was a hole, literally a hole in the floor with a piece of newspaper covering it, and she said, ”Watch the hole.‘ I thought oh my god, and these people were tremendous hoarders. Newspapers, magazines, floor to ceiling, just crap. I mean, it looked like the yard sale from hell. I mean even walking up the road to their house, this man collected those aluminum pans œ the oven pans you can buy œ he must have had 200 of them stacked up in front of the yard, I guess he used them for something. I was afraid to sit down in this house, I didn‘t know what was going to crawl on me.“ Dara‘s comments illustrate how hospice workers often do not know what to expect when they go to a patient‘s home. During this part of the interview Dara clearly was uncomfortable and even disgusted by this patient‘s home‘s condition. However, Dara explained that while she documented the conditions, she did not say anything overt to the patient about the home‘s condition. This seems to me to reinforce these workers‘ belief that they are truly guests when entering the patient‘s territory. That is, Dara fulfilled her social work responsibilities by documenting about the home, but she acted as a guest by not sharing her observations and feelings with the patient. While many workers spoke of the physical condition of homes, others discussed the unpredictability of family dynamics and needs within the home. They explained that when —you‘re in the home, you‘re dealing with the patient but also the sister, the brother,
78 the caregiver.“ Some workers spoke favorably about witnessing family dynamics, highlighting how they (workers) could gain useful information by being in the home. Nurse Kim recalls: —You can see more the dynamics too, the environment if they‘re safe or not. It‘s more the family dynamics you‘re dealing with at home. How they react in their setting. They‘re more comfortable, they‘re relaxed, so you get more things you haven‘t seen in the inpatient. You didn‘t know that the patient, they have a gun. We didn‘t know they had a gun before.“ Kim‘s comments demonstrate how workers may learn more about the patient by being in the home. In these situations hospice workers can see for themselves that patient‘s environment as well as how that patient‘s family members interact. This information may prove useful in terms of learning about issues such as safety (patient has a gun in the house) and caregiving (how family is handling the responsibility of caring for patient). On the other hand, some workers explained that the unpredictability of family needs and dynamics can pose challenges. Whereas in some other settings like an inpatient unit the focus is primarily on the patient, in the home the hospice worker is expected to serve both the patient and the family members. Social worker Ida explains the overload that can occur when a worker must address the family‘s needs in addition to those of the patient: —I think that social workers who work on the home teams have a much more difficult job than for me in the nursing home. Because in the nursing home we have staff, other people who are also working for the patient. When the patient is at home, that team is the only one for that patient, that‘s it . . . . So on the home teams, the social workers are the ones who get the brunt of œ not only the support they have to provide to the patient, family caregiver, they have to œ let‘s say the family needs respite. The social worker is the one who has to fill out the paperwork in order to get the patient into a unit or into a nursing home, for the family to have respite.“
79 Ida‘s comments reveal how serving the family in addition to the patient contributes to the workload of the hospice worker. Home environments, in which hospice workers are responsible for caring for the patient but also for family members, seem to contribute to workers‘ experiences of both quantitative and qualitative role overload. Ida‘s description of social workers having to do the paperwork when families need a break seems to me an example of quantitative role overload. In addition to caring for the patient, now the social worker must complete even more tasks such as contacting agencies in the community to help the family members deal with the responsibilities of caregiving. From listening to other participants I learned that home environments often contribute to qualitative role overload as well. Qualitative role overload, when the worker has a finite amount of time to complete more complicated tasks, seems to especially occur when the worker must address complex family dynamics/relationships. Studies find that conflicts within families occur often and can add to the stress hospice workers face in their line of work (Csikai 2004; Erlen 2006; Fisher 2003; King and Quill 2006; Kirk 2007). Participants in my study corroborate these studies‘ findings that family conflict is the norm rather than the exception. For example, many workers recalled situations where —the brother and sister came to blows,“ —the son did not want to take his mom out of her home because she made him promise not to put her in a [nursing] home,“ and so on. It seems to me that dealing with family dynamics, the complex relationships between family members, contributes to workers feeling at times overloaded. Family dynamics add to the worker‘s quantitative role overload by giving that worker more tasks to do. But the complexity of dealing with these delicate relationships also adds to the worker‘s qualitative role overload as well. Another challenge of the hospice worker being a —guest“ in a patient‘s home is that sometimes it is difficult to maintain professional boundaries when interacting with patients and families in the private, intimate environment of their home. Many workers explained that patients and their families also view the hospice worker as a —guest,“ and therefore they will attempt to treat them as such by offering them —a drink,“ —cookies,“ and —the comfortable chair.“ While my study‘s participants quickly pointed out how they
80 were touched by these gestures, they also spoke of how in a way these kind gestures can make their job even more difficult. One worker who wished to remain anonymous says: —It‘s really sweet when you go in and the lady offers you some homemade cookies. But then she does, you‘re not sure what to do. If you take‘em, then you‘re making it about you, and it‘s not about you, it‘s about them. It‘s about the patient. They shouldn‘t be worrying about you, fretting over you. If you eat the cookies, it‘s kind of unprofessional, if you know what I mean. Who eats oatmeal raisin during an assessment? {laughing} But if you don‘t take the cookies then œ you don‘t wanna be a bitch, you know? The lady‘s 85, eat the damn cookies! {laughing} So the boundaries can get really messed up and blurry.“ This worker‘s example demonstrates the tenuous balancing act that hospice workers must perform when interacting with patients and families in their home. Because the home is private, intimate, the patient‘s territory, the worker sees her/himself as a guest, and usually the patient and family sees her/him that way as well. Cultural norms dictate how one is expected to act as a guest (expectations for the hospice worker), just as these same norms determine how one is expected to act toward a guest (expectations for the patient/family). The issue, however, is that while these hospice workers are, in some ways, —guests,“ they are also professionals treating their clients. Challenges for the hospice worker inevitably arise because social rules for professional- client relationships are extremely different from guest-host/hostess relationships. In sum, the main challenge of a patient‘s home is that it is indeed his/her own territory in which the hospice worker views her/himself as a guest and is often treated as one, for better or for worse. I have discussed at length hospice workers serving patients and families in their own homes because in the U.S. that is where most people receive hospice services. However, as I explained earlier, hospice workers also serve patients and families in hospital wards, inpatient units, assisted living facilities, and skilled nursing facilities. Although hospices across the U.S. provide care in various settings, many of my study‘s participants strongly believe that they must work in different settings because of Crossings‘ purposeful efforts at expansion to make more money. Now I highlight some
81 challenges my study‘s participants noted when discussing these other settings in which they work. Some participants explained that working in a hospital ward is very different from working in a patient‘s home. One benefit of working in the home is privacy. Because patients are in their own territory, they often —open up easier“ and —feel like their privacy is being respected.“ On the other hand, lack of privacy is one of the biggest challenges of working in a hospital ward. Nurse Trudy explains: —In the hospital the privacy issue is very difficult because that‘s the law, you have to maintain the person‘s privacy, yet that‘s very hard to do especially in a semiprivate room with a deaf patient, it‘s near impossible, so you‘re always shutting doors, you‘re always so nervous, I am anyway, about that privacy issue.“ Trudy‘s comments illustrate the difficulty hospice workers encounter when trying to protect patient confidentiality, a key tenet of health care in general and hospice practice in particular. In a home privacy might be difficult given that other family members are present, but at least the patient is the only patient in that environment. In the hospital, however, two patients may share a room, and the hospice worker must somehow manage that awkward situation. In addition to the privacy issue, Trudy‘s comments also point to the family dynamics and needs issue. She goes on to say, —[In the hospital] the patient is usually sicker so they‘re a little less involved in the decisionmaking so usually it‘s more with the family.“ Her comments demonstrate how the hospital can be similar to the home in that family members often need a great deal of psychosocial care. Usually patients at home are —higher-functioning“ and hence can remain at home, but family dynamics are introduced because, as I just explained, the worker is physically there with them in their environment. In the hospital patients are usually sicker, that is why they are in the hospital in the first place. However, family dynamics often arise precisely because the patient is sicker. Nurse Kim says: —In a hospital the patients‘ families are needing more help psychosocial, because they‘re dying in there. Or they were just told they have a terminal illness, so you‘ve got the first part of the grieving process.“ Kim and other participants spoke of having to help family members come to term with their loved one‘s
82 impending death, because in the hospital sometimes the family and patient has just recently received the terminal diagnosis. Because U.S. culture considers death so taboo, many family members are in denial and are unprepared for this devastating news (Chapter 4; Csikai 2004). So the result is that, like in the home, in the hospital hospice workers often find themselves helping both the patient as well as the family. In addition to hospital wards, hospice workers also work in inpatient units. Hospice patients enter the inpatient unit usually when they are in —crisis mode.“ Participants told me that the average stay for a patient in a Crossings inpatient unit is anywhere from three to seven days, sometimes shorter than that. Patients go to inpatient and either recover enough/get stabilized enough to go back to their home/facility/etc., or they die. By definition inpatient units are fast-paced, because patients either get discharged or die. Nurse Linda describes working in an inpatient unit: —Inpatient, I would say, is one of the easiest settings, because they‘re coming into our turf, so we‘re setting up the rules. It‘s probably harder for the patients, but it‘s easier from a nursing role to have that inpatient because I have my meds right there, I don‘t have to be planning ahead on how I‘m going to get them there, I mean, everything is just boom boom boom.“ Many of my study‘s participants described inpatient as the —easiest“ environment in which to work, because the inpatient units are located in and run by Crossings Hospice facilities. These workers seem to appreciate how the inpatient units have conveniences such as access to medications, etc. Perhaps this is in response to workers experiencing quantitative role overload. Because workers must serve increasing numbers of patients, any convenience that makes their tasks easier to complete in a finite amount of time œ such as medications being readily available in one place œ can help alleviate their stress. However, it seems to me that these workers prefer the inpatient unit especially because these units are based on their own (hospice) rules. Other participants reiterated how inpatient units are hospice‘s —turf“ by highlighting how all the workers in the inpatient units are hospice workers, unlike in other settings. Music therapist Bess says: B: —Inpatient they‘re all hospice workers although there‘s a hair different dynamic because they‘re in the inpatient unit, but as far as dealing with
83 staff, it‘s different from the skilled nursing facilities. Because you‘re all still hospice workers. Whereas there‘s a huge difference between home and skilled nursing facility because of what you‘re dealing with and who‘s taking care of this patient and who‘s taking care of the family, and they‘re really part of the team as well, the skilled nursing facility staff, not that they meet with us every week. {whispering} Thank goodness.“ G: —{laughing} And why wouldn‘t you want that? B: —Well, you‘re dealing a lot. You go to care plan meetings œ well, I don‘t, but the nurse and social worker do. But I just think, number one, we‘d be in meetings all the time if we had the skilled nursing facility staff too. But it‘s just a different dynamic . . . . In the skilled nursing facility you have a whole additional team to take care and collaborate with.“ My study‘s participants often described inpatient units as —controlled“ and —easiest,“ which I began to understand means that these workers like the inpatient units because they are part of hospice‘s —turf“ worked by hospice professionals. Studies find that many hospice workers feel more comfortable working in inpatient units that are run by hospices precisely because of this issue of control (Mesler 1995). Finally, hospice workers serve patients and their families in skilled nursing facilities (nursing homes, often referred to by participants as SNFs) as well as in assisted living facilities (often referred to by participants as ALFs). Workers described some challenges in these settings as being similar to those that arise in other settings. For example, one issue that came up was the lack of privacy. Music therapist Marcy recalls: —One challenge in the skilled nursing facility is that if you have someone who shares a room. I have one patient in particular who, she‘s just so rigid and yet she responds to music so well, and she does a lot of perseverating, and back and forth, but music is a great way to bring her out of that. Well, she used to be in a room by herself, well, recently they changed her to another room, and there‘s a woman there, her roommate, who I mean is just oh gosh, I think she has Alzheimer‘s disease, she‘s just, it‘s hard to get in there, because she doesn‘t quite know what she‘s saying and she‘ll yell at you and she‘ll yet obscenities, and she has the TV blared
84 up, and this is a patient that cannot be moved, she‘s in her bed. So sometimes with the roommates that can be frustrating, because you don‘t have the privacy. And especially if it‘s a patient who‘s more coherent, you want confidentiality, and you also don‘t want the roommate ”Oh, I love Amazing Grace, you know Amazing Grace?‘ Because they‘re looking at it as ”Oh, she‘s here for us.‘“ Marcy‘s story illustrates the difficulties hospice workers face when a patient is not in a private location but rather shares a room. In this particular situation Marcy explains how the other patient‘s lack of control over her mental state ultimately interferes with her (Marcy‘s) task of comforting her patient. This issue of lack of privacy also came up in hospitals as I explained earlier. Another challenge that arises in facilities that is similar to other settings is the unpredictability of family dynamics and needs. Participants explained how some of these patients suffer from dementia and other forms of mental deterioration. As a result, hospice workers often find themselves interacting just as much, if not more, with the patient‘s family. Sometimes family members are in disagreement, whether about the patient‘s care or other issues. One worker who wished to remain anonymous described a situation in which the patient‘s brother lived in another state. The sister had been the patient‘s primary caregiver until the need arose for the patient to start receiving care in the nursing home. When the brother found out that his mother was now in a skilled nursing facility, he —totally freaked out, got the first flight to [state]. When he got to the nursing home he marched up to his sister and shoved her against the wall!“ This worker‘s story reveals the challenges that hospice workers face when dealing with not only patients but also their families. Studies find (Chapter 2) that hospice workers often face the challenge of families being rife with conflict (Erlen 2006; Fisher 2003; King and Quill 2006; Kirk 2007). In addition to the above, two main themes emerged from my interviews about working in skilled nursing facilities and assisted living facilities. First, these facilities often have their own sets of rules, which at times differ from the rules/guiding principles of hospice. This clash in organizational rules can pose challenges for hospice workers, who are expected to follow the rules of hospice but are also working within these
85 facilities. Second, many participants described how challenging it is to work with these facilities‘ staff. Some participants said that sometimes cultural and professional differences exist between facility staff and hospice workers. My study‘s participants also maintained that some facility staff distrust or even resent hospice workers, because they view hospice workers as encroaching upon their territory. First, facilities such as nursing homes and assisted living often have their own organizational rules. Challenges arise when hospice workers find themselves in situations where the rules of the facility clash against the rules/guiding principles of the hospice profession. Social worker Margie recalls one such incident: M: —We had a patient, wonderful lady, I mean she drove everybody nuts at the nursing home, but œ she was schizophrenic. But you know, she was lonely, nobody liked her, nobody cared about her, she could scream and holler all day, no one ever came in to her. Well, I would scream and holler too, you know? They put her food here, she couldn‘t reach it, she couldn‘t get up and walk, and then they‘d take it away. ”Oh, you didn‘t eat today.‘“ G: —My god!“ M: —You know? They wouldn‘t give her the medicines. We were in there one day, the nurse and I, and in two a half hours she was so hungry, and she liked ice cream, and she wasn‘t allowed to have ice cream. I mean the lady‘s dying, she‘s on hospice. The nurse fed her five little cups of ice cream.“ Margie‘s story, like many other participants‘ anecdotes, seems to confirm some of the negative stereotypes surrounding nursing home care in the U.S. Many workers besides Margie described situations where patients and/or their families were unhappy with or even fully hated the care (or lack thereof) provided in nursing homes. I do not mention this in order to confirm nor deny these stereotypes; I mention it because it was such a recurring point raised by my study‘s participants. More to the point here is that Margie‘s story illustrates the conflict between the rules of the nursing home versus the guiding principles of hospice. Hospice philosophy emphasizes comfort care. The goal of hospice is to give terminally ill patients a dying
86 process that is as pain-free, dignified, and comfortable as possible. Therefore, if a hospice patient wants ice cream, then hospice will give him/her ice cream, because it is a source of comfort and even happiness to that dying person. On the other hand, nursing homes take a more curative approach to health care, because not all nursing home patients are terminally ill. Therefore, if a patient wants a food that is not viewed as healthy or good for him/her, then nursing home staff are not supposed to give that food to the patient. This clash in orientation œ comfort versus curative œ poses a role conflict for hospice workers. Role conflict exists when a worker faces two or more demands that seem to contradict each other or, at the very least, that compliance with one demand makes compliance with the other demand much more difficult (Chapter 2). In other words, a hospice worker‘s orientation would lead her/him to give the patient ice cream. However, the nursing home‘s rules prohibit that. In these situations the hospice worker faces the challenge of following the standards of her/his own profession while simultaneously being expected to honor the rules of another profession. In addition to the clash between organizational rules, my study‘s participants also spoke at length about the difficulties in working with the staff of these facilities. From the point of view of my study‘s participants, sometimes difficulties arise from cultural and/or professional differences between themselves and facility staff members. Nurse Samantha recalls: S: —There‘s cultural differences there, because typically in assisted living, most of the professional staff members are LPNs, they‘re not usually RNs. In this particular area I find we get a lot of island nation-type people working who appear perhaps to have had less education than an LPN who was trained here. There‘s sometimes a language barrier. And then I guess a racial barrier occasionally too? When I came on board and I was a team nurse initially, my preceptor took me out to my facilities I was taking over for a whole month, and everyday these people met me and they were nice to me and the first day I showed up by myself they acted like I was a complete stranger! I couldn‘t believe it! I was so, I‘d be talking to them and they‘d walk away from me! It was awful! You feel like a complete idiot, and yet here you re helping them, and trying in my opinion to take
87 some burdens off of them. I think they view you though as you‘re giving them work, because now you‘re changing things. Or you‘re going to tell on them because they‘re not doing what they should be doing.“ G: —So a little distrust there? S: —Yeah, I think so. It‘s like you have to prove yourself to them, even though professionally you‘re probably at a higher level, but they‘re very territorial, you‘re a guest, and you know, you have to prove yourself. So it‘s very difficult.“ Samantha‘s story illustrates how she finds it challenging to work with facility staff who are of a different culture than herself. She also seems to feel that some of these staff are not as educated as her, yet she still must —prove“ herself to them. Her comments also point to the other issue many participants raised, that, from their point of view, facility staff often seem to distrust or even resent hospice workers. My study‘s participants attribute this distrust and/or resentment to facility staff‘s perception that hospice workers are encroaching upon their territory. These themes have been documented by other studies (Gray-Toft and Anderson 1986-87; Hospice Management Advisor 2002 and 2004; Munley et al. 1982; Parham 2002). To summarize, so far I have explained how one aspect of hospice becoming more like a business lies in Crossings Hospice engaging in processes of expansion. That is, Crossings Hospice is attempting to enroll more and more patients, and this is probably in response to the increasingly competitive health care industry in the U.S. Health care organizations are attempting to gain legitimacy by claiming they have quantifiable, measurable outcomes, and so hospices like Crossings are trying to serve more and more patients. Crossings‘ attempts to serve increasing numbers of patients poses many challenges for its workers. First, hospice workers experience quantitative role overload. That is, they are being asked/forced to serve more and more patients, yet they generally are not granted more time to meet these new demands. These workers complained about their organization‘s fixation on the —numbers“ as well as its attempts to reward and punish workers. Second, hospice workers experience qualitative role overload. That is, they are being asked/forced to serve more higher-acuity patients because of Crossings‘ shift to a more open-access orientation. Workers are stressed because now their tasks are
88 often more complicated, yet they are not given more time to complete them. While some participants view open-access as a positive way of extending hospice to more people in the population, others worry that at times open-access can do their patients more harm than good. Finally, hospice workers serve patients and their families in a variety of settings. While this has been a characteristic of hospice practice for years in the U.S., many of my study‘s participants perceive their having to work in different environments as yet another attempt of Crossings Hospice to expand its client base. As I explained, each setting poses its own unique challenges for my study‘s participants. Now I turn to the coping strategies hospice workers in my study use to deal with these challenges of expansion. First, many of these workers spend less time œ quantity and quality œ with their clients. Second, some of these workers have abandoned their own professional socialization activities. Both these coping strategies seem to be attempts to address role overload due to Crossings‘ expansion. Finally, many of my study‘s participants engage in impression management to handle the complexities of working in a variety of settings. Coping Strategies Sacrificing time with clients. Studies reveal that, as a result of hospices expanding their client base, many hospice workers sacrifice time their clients. Ward and Gordon (2006) conducted a case study of a midsized, nonprofit hospice that specializes in home care. They find that because of organizational expansion, this study‘s participants —see more clients per unit time“ (12). In other words, workers visit more clients each week. Ward and Gordon also find that their participants —spend less time with each client“ (12). This is an issue of both quantity as well as quality. These workers are rushing from client to client, trying to maximize the number of patients they visit within a week. Not only is the amount (quantity) of time spent with each client reduced, but so is the quality. Ward and Gordon cite Bradshaw (1996) to reiterate how hospice philosophy emphasizes that workers should be totally present, in the moment, with their patients and families. However, in response to organizational expansion, hospice workers find that the time they do spend with clients is of a lesser quality due to being rushed and so on. Ward and Gordon cite Heidegger (1996) and describe this as the —erosion of authentic time“ (Ward and Gordon 2006: 13).
89 In order to cope with the stress of role overload, the workers in my study sacrifice the time they spend with their clients. Many participants, primarily those on home Teams, complained that they spend so much time driving to visit different patients that they never have time for all of them. Music therapists often pointed out how they see their patients on average once a month: —And what can you do once a month? You see them, they‘re functioning, you see them next time, and now they don‘t recognize you, or sometimes you find out they died.“ Many workers explained that their supervisors had suggested to them that they could —make their numbers“ if they —cut off the patient, tell them ”Sorry I have to leave now, I have another appointment at one o‘clock.‘“ Nurse Trudy recalls a time she was admitting a patient to hospice: —I‘m also finding that, and again I think it‘s just logistics of medicine anymore, is that they‘re like, ok, I was sitting talking to a 90 year old the other day, and I can do paperwork really quick. He was talking and talking, and that is one of my joys . . . . So we‘re talking and one of the other nurses that‘s orienting me to that particular location, and I‘m letting this guy talk and we‘re joking and we‘re laughing but every once in a while I‘m learning something. He lives alone and oh my gosh, what are we gonna do he lives alone, oh he has a home health policy, oh that‘s good. So I‘m making mental clicks that I can put on that paperwork. The other nurse that was with me came over, took the paper out of my hand, went around me . . . . And he took the paper and said, ”Ok, what do you think about having this and this and this and this is where you sign‘ and he did the whole thing and I was just like oh my god, you know? And when we got outside he said, ”He was gonna talk all day.‘ And I thought, so? So what! He‘s dying! He has leukemia! He‘s 91 years old! He lives alone! He‘s got no family! Let him talk!“ Trudy‘s story illustrates how hospice workers find themselves sacrificing the time they spend with their clients. Hospice workers like Trudy are forced to cut back on the quantity of time they spend with each of their clients. Many workers maintained that this is —the way of the future“ and viewed this sacrifice of time with clients as inevitable in
90 the era of hospice becoming more like a business. However, most participants seemed depressed, frustrated, and/or angry about having to resort to this type of coping strategy. Sacrificing time with clients seems to me a problem-oriented coping strategy. That is, these workers are directly attempting to manage their role overload by spending less time with each patient. I explained in Chapter 2 that organizational research generally characterizes problem-oriented coping strategies as forms of —adaptive coping,“ because these behaviors usually mediate the effects of role conflict more successfully (Siegall and Cummings 1995). However, it seems to me that although these workers are attempting to address the problem (hence problem-oriented coping), they often came across to me as depressed and unhappy about having to do this. Based on my interviews I would suggest that this problem-oriented strategy of sacrificing time with clients is, in fact, a form of maladaptive coping as well. Although this strategy enables workers to directly deal with the problem of role overload, they seem to suffer emotionally because of it. Sacrificing time with clients also seems to me a form of maladaptive coping because, as revealed in Trudy‘s comments, it seems counterproductive. Trudy explains that while talking with this particular patient, she is also —making mental clicks“ and noting important facts that she plans to document later in her paperwork. This seemingly informal conversation is, in fact, a way for Trudy to learn more about her patient than perhaps she would have otherwise. By cutting him off and sacrificing the time she spends with him, Trudy is potentially losing out on information that may have proven important later in this patient‘s care. While many participants spoke of cutting back the quantity of time they spend with clients, I was also struck by how they seem to sacrifice the quality of time with their clients as well. As I explained earlier, Ward and Gordon (2006) conclude that organizational expansion often leads to an erosion of authentic time. I too found that my study‘s participants are sacrificing both quantity and quality of time with their patients and families, and some participants seem to be aware of how this contradicts hospice philosophy‘s emphasis on truly being in the moment with patients. Nurse Margaret says: —In order to practice what hospice care really is, it means not looking at your watch, it means doing whatever it takes, it means if the time spent there is valuable, but you know in fact you have five other people to see,
91 you do not have the privilege of spending unlimited time, you do have to watch. They deserve to have me, or the care directly, and that‘s really frustrating to some of the staff, and it just happens, and when those occasions happen, you just have to do the best with the time you have. It may not be the way you want to practice, but it‘s just the way it is. It‘s the math, it‘s just the math.“ Margaret‘s comments demonstrate how hospice workers are limiting the amount of time they spend with each patient. She insightfully points out that not only is the amount of time affected, but so is the quality of time. She seems sad because, while her patients —deserve to have“ her, she and other workers know they must simply ”do the best with the time you have.“ To summarize, Crossings Hospice‘s focus on expansion has resulted in its workers feeling stressed because of the pressure to see more patients. My study‘s participants often attempt to cope with this role overload by sacrificing the time they spend with patients and their families. Although this is a problem-oriented strategy in that they are directly confronting the issue, it appears to be maladaptive, because many workers are frustrated, unhappy, and are ultimately sacrificing the hospice ideal of being in the moment with their patients and families. Abandoning professional socialization activities. Many of my study‘s participants directly address their role overload by sacrificing the quantity as well as quality of time they spend with their patients and families. A second coping strategy that emerged from my interviews is that some workers have abandoned their professional socialization activities in order to create time to see more patients as required by Crossings Hospice. According to Weedman (1998), —Professional socialization is the transmission of the values, norms, habitual ways of seeing which belong to particular occupations and shape the ways in which they conduct their work and establish themselves in the larger social world. It includes the formation of an individual professional identity, the student's coming to view herself as a member of a profession with the knowledge and responsibilities which attend membership. It is thus an inherently social process . . . .“ In other words, professional socialization is the process by which an individual becomes a true member of his/her profession. S/he achieves this by engaging in activities which train him/her in that profession‘s substantive body of knowledge as well as its language,
92 beliefs, and norms. A concrete example of this is a sociology graduate student like myself. Some activities I have engaged in for professional socialization have been serving as a Teaching Assistant to mentors as well as attending conferences. Some of my study‘s participants explained that while they enjoyed and benefited from their activities of professional socialization, they made the conscious decision to give them up in order to free up time to see more patients. One participant who wished to remain anonymous gave an example: —It‘s just frustrating, it takes the joy out of it, and it puts pressure on us because, like we go to a conference, and it‘s education, that‘s still counted as one of our days or however long it is that we still have to make up those numbers . . . . Going to a conference, where you‘re furthering your education, and you‘re representing hospice œ like I was gone three days a couple of months ago œ and my coworker and I were presenting at the conference, and we had to make up those patients . . . . And that‘s when it takes the joy away. So I just personally made a decision that I‘m just not going to do conferences anymore. I thought, who wants the pressure? So for three days I had to come up with twelve patients, compared to other coworkers who were there the entire month of their working days, and they counted those three days, does that make any sense? And yet because 95 percent of the work is fabulous, and I know that I‘m making a difference, you know, that‘s definitely what keeps me grounded. But I hate that sales talk, I hate that.“ This worker‘s comments illustrate how some participants cope with their role overload by abandoning their professional socialization activities. Although s/he is clearly unhappy with her/his decision, this worker seems to feel that Crossings Hospice has left her/him very little œ if any œ choice in the matter. Crossings mandates that s/he visit increasing numbers of patients, and œ despite having a valid reason why s/he did not visit all the patients that month œ Crossings demands that s/he somehow make her/his —numbers“ anyhow. It seems to me that this is a problem-oriented coping strategy. These workers are directly addressing their role overload by making the conscious decision to give up their
93 professional socialization activities. However, I would suggest that yet again this strategy seems to me a maladaptive form of coping for two reasons. First, these workers seem unhappy and frustrated with their decision. Although they frame it as their decision, their choice, it seems they feel they in fact had very little choice, given the pressures placed on them by Crossings. Second, while no worker explicitly said this, it seems to me that this coping strategy penalizes both the worker as well as her/his clients. This strategy penalizes the worker because s/he is giving up activities that s/he enjoys and also benefits from. In my opinion this strategy also has the potential to adversely affect hospice patients and families as well. By engaging in professional socialization activities such as conferences, hospice workers are able to remain educated and up to date in their profession‘s substantive knowledge. This knowledge in turn benefits patients and families who are being served by these workers. When hospice workers feel pressured to give up these activities, they are losing out and so are their clients. Engaging in impression management. The workers in my study attempt to cope with their increased workload by sacrificing time (quantity and quality) with clients and abandoning their professional socialization activities. I have explained that in addition to role overload, some of my study‘s participants feel that Crossings‘ expansion has led to them having to work in environments ranging from homes to hospitals to inpatient units to skilled nursing facilities and assisted living facilities. A theme that emerged from my interviews is that many workers engage in impression management to handle the complexities of working in such a variety of settings. According to symbolic interactionist Erving Goffman, impression management refers to an individual‘s attempt to influence how others perceive him/her. That is, an individual tries to manage the impression s/he is making upon others. In The Presentation of Self in Everyday Life, (1959) Goffman uses dramaturgy to suggest that, to some degree, life is like a play in that interaction is actually a performance. In other words, we are all, to some extent, acting and playing our parts in order to affect how others view us. My interviews reveal that many of these hospice workers engage in impression management to cope with the complexities of working in a variety of settings. Earlier I explained how each setting poses its own unique challenges for the hospice worker. As I
94 listened to these participants talk about the differences between work settings, I was struck by how some workers consciously and purposefully try to control their actions in ways that they view as appropriate for/necessary in that particular setting. Integrative therapist Mike says: M: —You know, I‘m coming into their home, kind of like a guest, and they tend to open up differently.“ G: —Differently how?“ M: —They‘ll talk to you more like, it‘s almost like social hour. They know you‘re not there to be social but they like the visit. It‘s like they have company. Whereas in a hospital setting, they know you‘re coming in because ”I‘m in a hospital.‘ But once you‘re in, you turn it into like they‘re in the home.“ G: —Right. And how do you do that?“ M: —That‘s the trick is to turn the hospital into the home, and not make the home the hospital. Because people that are in that home don‘t wanna be in the hospital setting. {laughing} So I‘m not gonna go in like {serious, professional voice} ”I‘m here to do your treatments, let‘s get this over with.‘ {laughing} You have to make it like you‘re in their home and I‘m visiting, and ”hey while I‘m visiting why don‘t I work on your back or your neck or do some reiki?‘“ G: —And how do you do that?“ M: —Just like that. I play some music, I have an ipod thing, and, ”You like this?‘ ”Yeah.‘ ”Cool.‘ We start talking and they kind of drift off, go out, and ”Oh, thanks for coming by.‘ Just like I came by as a friend who was visiting in the neighborhood.“ Mike‘s comments illustrate that he is acutely aware that patients who are in the home are there because they do not want to be in a hospital, while patients in the hospital would rather be at home. So, according to Mike, —the trick“ is to keep home feeling like home, and to make the hospital feel like home. While with the patient Mike engages in impression management by manipulating both his words as well as his tone of voice. Instead of speaking like a serious, professional, medical care practitioner, Mike tries to
95 sound œ in his selection of words and in his tone œ like a friend who just happened to drop by for a casual visit. Earlier I cited a participant who talked about being in a patient‘s home and trying to decide whether or not to accept cookies that the patient offered her/him. While from an outside point of view laboring over decisions like this may appear trivial and perhaps even silly, within hospice work these decisions can be vitally important. Because hospice workers often are working in a patient‘s private home, it can become difficult to maintain proper professional boundaries. As I explained earlier, many hospice workers view themselves as —guests“ when entering a patient‘s home, and many patients view them as —guests“ and try to treat them as such. In reality, however, hospice workers are medical professionals treating clients. While there are rules that guide professional-client relationships, these rules and boundaries can become blurry when the professional finds him/herself in a patient‘s territory, especially such an intimate one as the home. In this context where hospice workers simultaneously try to maintain professionalism while also establishing rapport with their clients, so-called trivial decisions such as whether or not to accept cookies offered by a patient can become paramount. Bereavement counselor Mike speaks in depth about this: K: —A home visit in some ways is a more natural setting, but clinically less natural {laughing}.“ G: —How so?“ K: —Well, meaning in most places that I‘ve worked, the patient or client comes to the office and then they leave. So they‘re in your environmentœ— G: —It‘s your turf.“ K: —Exactly, your turf, and there are rules that are understood, there‘s a social ritual around going to a quote doctor‘s or therapist‘s office or something like that.“ G: —Rules such as“ K: —There probably won‘t be food exchanged, that you‘re in and out, the seating arrangement is such, they won‘t be bringing a dog that climbs all over you {laughs}, there won‘t be family members, there won‘t be distractions.“
96 G: —And these are all things of course that you get in the home. Are those things you find interfere with your work? Or you don‘t care?“ K: —{laughing} It‘s interesting sometimes.“ G: —Right. But, all kidding aside, it must be difficult because you‘re dealing with a really serious situation and yet you have all this other stuff.“ K: —Yeah, definitely. I think the thing there is to be flexible . . . . If you‘re brought into someone‘s home and they wanna sit over here at the dinette table, and they offer you a chair, it‘s kind of inappropriate to say ”Well, can I sit over there,‘ but it‘s a subtlety that can have an effect on the way that the session‘s gonna go . . . . I mean, one of the things for instance is beverage. I think you‘re kind of weighing out a whole lot of stuff. In some cases to not accept a beverage like tea or something would probably be less rapport building than to accept it. So we‘re talking about a bunch of things . . . . Is there more to be gained by taking some coffee or tea or is something lost if you do that? And I usually don‘t do it, I always have water with me when I‘m driving . . . .“ G: —So you usually choose not to take the drink. Why? Is it the informality of that?“ K: —Well, I think the main reason is that I‘m there for them rather than them being there for me . . . . So I keep me out of it as much as possible . . . . I think one of the things you find particularly with people that are older, and a lot of our clients are older, they‘re maybe more able to receive your help if they offer you something . . . . There‘s an imbalance, there‘s the elderly kind of pride. So in some ways, for some people to accept your help or let you into their life, for someone to be able to accept your helping, to have a rapport with you, they have to have some way to establish their value in the relationship. Sometimes it‘s prideful, sometimes it‘s heart-driven, they‘re just caring people. So that‘s one of the things, I don‘t want them to solve my problems for me, but I may œ I
97 haven‘t accepted water for a real long time, but I may, if I felt that was an issue, I may.“ Kyle‘s comments reiterate some themes that have emerged previously in my study. For one, Kyle describes the unpredictability of working in a patient‘s home. Hospice workers in this setting face the challenge of unpredictable physical conditions œ such as the presence of a dog œ as well as family dynamics. Another theme that Kyle reiterates is the idea that —it‘s not about me; it‘s about them.“ Time and again my participants vehemently explained that their job is to focus on the patient and family, and to keep themselves out of the situation as much as possible. In order to balance working in different settings, some hospice workers engage in impression management. I quote this lengthy conversation with Kyle in order to demonstrate how purposeful and thoughtful he is when it comes to conducting himself with a patient in that patient‘s private home. Decisions that may appear from an outside point of view to be trivial or inconsequential, in hospice work, become very salient. For example, Kyle notes that in a therapist‘s office, the seating is set up a certain way in order to facilitate that session. However, when he enters a patient‘s home, he does not know what to expect in terms of the seating arrangement. Although he may judge the arrangement to be not conducive to a meaningful therapy session, there is little he can do because he is in the patient‘s territory. Like a previous participant, Kyle clearly labors over the decision whether or not to accept an offering by his patient, in this case, tea or coffee. Again, from an outside point of view this may appear to be a minor issue. However, Kyle is acutely aware that his actions either can contribute to and maintain professional boundaries or detract from or even dismantle them. On one hand he is a professional, which brings certain rules and expectations for behavior. On the other hand Kyle acknowledges that this patient offering him a drink might be an attempt on the part of the patient to feel more equal in this inherently unequal and therefore uncomfortable relationship. Therefore Kyle struggles over whether or not to accept the drink, because he is trying to carefully balance between maintaining professionalism and also establishing rapport with the patient. To summarize, some participants engage in impression management to handle the complexities of working in a variety of settings. I view this impression management as a
98 problem-oriented coping strategy. These workers attempt to negotiate the delicate boundaries in each of these settings by carefully and purposefully conducting themselves in certain ways. They give special attention to matters such as their selection of words and tone of voice, where (if possible) they sit, whether or not they accept food or drink. While in purely social situations some of these decisions may be inconsequential, in hospice work they can prove very important in influencing the nature of the interaction between worker and client. Perhaps impression management is a form of adaptive coping, because this strategy appears to help workers deal with or even avoid potential conflicts that may arise from working in different environments.
Division of Labor Because the dying process raises issues ranging from medical to psychosocial to spiritual, hospice focuses on providing holistic care for patients and their families. Care is designed and implemented by the hospice Interdisciplinary Team, usually comprised of physicians, nurses, home health aides, social workers, and chaplains. Hospices usually also employ bereavement counselors, and some hospice organizations also employ therapists (Chapter 2). Hospice‘s use of a highly specialized division of labor is intended to provide holistic care to patients and families. Studies suggest, however, that hospice‘s increasing division of labor between professionalized roles is also a response to U.S. health care‘s shift to a more business orientation, where health care is no longer a service but a commodity (Bradshaw 1996; Ham 1997; Monahan 2003; Ward and Gordon 2006). As U.S. hospices have expanded in order to compete in the increasingly business- like industry of health care, hospices have increased their division of labor. This highly complex and specialized division of labor is evident within the hospice Interdisciplinary Team, where different professionals‘ roles are supposedly clearly delineated (Bradshaw 1996; Monahan 2003; Ward and Gordon 2006). Like many U.S. hospices, Crossings Hospice publications describe the professional role of each member of the hospice Team as if it is clear-cut. Physicians work with Crossings‘ Medical Director to provide medical care and make home visits when necessary. Pharmacists dispense medications and discuss them with the nurse and physician. Registered nurses assess the patient and
99 his/her disease process, give medication, and provide emotional support to the patient and family. Certified nursing assistants give personal care to the patient, including baths, skin care, and other matters of hygiene. Licensed medical social workers offer emotional support to the patient and family as well as help them with documents such as advance directives and Do Not Resuscitate orders. Chaplains offer spiritual care for the patient and family. Music therapists use music to help patients reach their therapeutic goals. Integrative therapists address each patient‘s unique needs through means such as aromatherapy, energy work, and relaxation. Volunteers help the patient and family with a variety of tasks as needed, such as providing respite and doing groceries. Bereavement counselors offer support to the surviving family members. The division of labor within the hospice Interdisciplinary Team is intended to provide holistic care to patients and their families. However, many of my study‘s participants spoke of the challenges that arise from this increasingly complex division of labor. First, some participants wished they could see the patient through the entire hospice process. Second, many participants explained that while Crossings outlines workers‘ roles as if they are clear-cut, unique, and distinctly separate from each other, in practice workers‘ roles often overlap. Finally, some participants pointed to how this division of labor sometimes adversely affects patients and their families. Alienation of Worker from Hospice Process The hospice movement‘s shift toward a highly specialized division of labor is intended to provide holistic care to patients and their families during the end of life, where issues ranging from medical to emotional/psychosocial to spiritual may arise. However, some of my study‘s participants complained that the increased division of labor prevents them from seeing a patient throughout the entire hospice process. Social worker Dara says: —That‘s really an issue I have, where we‘ll [our Team] be following a patient for six months, and then get ill and they go inpatient and then they die, and they‘re not our patient anymore, and now here‘s a social worker that barely knows the family is doing all the bereavement, like here I‘ve been working with this family for like six months, and now œ I still call. I call anytime there‘s an expiration on my team, I always call the next day.“
100 Dara‘s story exemplifies the consequences as perceived by some participants of Crossings‘ increased division of labor. Dara describes how her long-time patient dies in an inpatient unit, and now another social worker steps in to do bereavement with this family Dara‘s been working with for six months. It seems to me that Dara is upset for both the family and for herself. She seems upset for the family, because this new social worker —barely knows“ them and yet is coming in at such an emotionally difficult and vulnerable time. I also think that perhaps Dara is upset for herself as well. Her comments seem to me to demonstrate how she feels she is not getting the closure she needs after this patient has died. She emphasizes how she always calls the family, even though according to Crossings they are not her responsibility anymore. This seems to me Dara‘s way of not only comforting the family, but perhaps it is also a way for her to close the case for herself, so to speak. Other participants also seemed to feel alienated from the hospice process as a as a result of the increased division of labor. Nurse Trudy began working for a hospice organization in 1979-1980. Now she works for Crossings, often as an admissions nurse. She talks about the vast differences she sees in hospice care between then and now: T: —We now have social workers, which we didn‘t have. We have clergy now, which we didn‘t have . . . . Now there‘s no resolution for me because there‘s so many people involved and there‘s so much, and they feel that that‘s a really good thing and I‘m sure it is, but it‘s a difficult transition when I‘m used to ”Let me walk you through this whole journey,‘ not getting to the fork in the road and saying, ”You go that way and I go this way, ok?“ G: —If you could have hospice the way you personally want it, what would it look like?“ T: —Well, I just think there‘s too many people, doing too many different things œ But a pass off, it doesn‘t feel comfortable to me. It‘s a huge change, very hard on me.“ Trudy‘s comments illustrate her discomfort with Crossings Hospice‘s division of labor. When she first started working in hospice, the nurse provided medical care, but s/he also gave emotional support, made contacts in the community (such as for social
101 services), and even delved into spiritual matters if the patient —went there.“ At that time the nurse accompanied the patient throughout the entire process, from admission to the end of life. In today‘s hospices (including Crossings), however, nurses supposedly provide medical care, social workers offer psychosocial as well as social services support, and chaplains oversee spiritual matters. Trudy points out that now, with a highly specialized division of labor among nurses, social workers, chaplains, and so on, she feels as if it is a —pass off.“ Rather than helping the patient throughout his/her entire —journey,“ now Trudy (like other hospice workers) is expected to fulfill her role only and then pass the patient on to the next worker. Trudy concludes by saying that she‘s —sure“ this increased division of labor is —a really good thing.“ However, it seems to me from her words, tone of voice, and the direction of the rest of our interview, that Trudy in fact does not view this division of labor favorably. It seems to me from our conversation that Trudy feels extremely unhappy, dissatisfied with her work, alienated from the entire hospice process. I am not surprised that Trudy seems to feel alienated; Marx (1858) argued that an increasing division of labor would result in worker alienation. Marx focused especially on how division of labor forces a worker to continuously perform one (or few) repetitious task(s). This results in the worker being isolated from the overall work process as well as his/her final product. One could (rightfully) argue that hospice‘s division of labor does not necessarily mean that a worker‘s work is repetitious or monotonous. On the contrary, most of my participants described their work as —new every day,“ —unpredictable“ (in a good way), and —always changing.“ However, I still view Trudy‘s feelings as a form of alienation in that she appears to feel isolated from the hospice process (because now she is limited to her one delineated professional role) as well as from her patients (because now she admits and then passes them off to other workers). Role Ambiguity among Team Members As I explained earlier, hospices in the U.S., including Crossings, describe their workers‘ roles as if they are clear-cut, unique, and distinctly separate from each other. However, many of my participants explained that, in practice, workers‘ roles often overlap, and distinctions between roles become —blurry“ at best. As I noted in Chapter 2, studies find that workers may experience stress as a result of role ambiguity, which is
102 when behavioral expectations for a role are unclear. Role ambiguity can occur when roles overlap, that is, supposedly separate roles actually in practice blend (Antonioni 1996; Beauchamp et al. 2002; Katz and Kahn 1978; Olk and Friedlander 1992; Tubre and Collins 2000). Studies of hospice work find that conflicts often arise from overlap between workers‘ roles, such as when nurses address a patient‘s psychosocial needs (Kulys and Davis 1987; MacDonald 1991; Reese and Sontag 2001; Rahman 2000). Many of my study‘s participants emphasized that although Crossings‘ literature spells out each worker‘s role as if it is separate and distinct, in practice their roles often overlap. From listening to these workers‘ stories I began to understand that their feelings regarding role overlap vary, depending on the situation. In some cases workers seem to view role overlap as normal, inevitable, and acceptable or even favorable. In other cases workers seem to be offended by the blurring of their responsibilities. Many workers spoke of role overlap as common and even inevitable. They described situations in which patients and/or their families would ask them to address a need that technically was outside of their role. Nurse Margaret explains: —I‘ve had patients for example that have asked me to pray with them. I‘m fine in my own skin doing that, so I‘ve had no problem doing that. Do I think that I‘m their spiritual counselor? No. And then I would pray with them and then say, ”Hey, is it ok with you if I give the chaplain a call and let him know that, or maybe you‘d like for me to call your pastor?‘ Always offering to get in touch with the person that might provide that. Now usually my job wouldn‘t be to give a patient a shower, but if the patient‘s dirty, I‘m gonna do that, provide that need.“ Margaret‘s comments illustrate how common it is for patients and families to ask a hospice worker to go outside of their role, so to speak. Although Margaret‘s professional role is nurse, patients have asked her to act the role of chaplain and pray with them. Margaret explains that she has agreed to do that, because she feels comfortable with that more spiritual role. But she also points out that after complying with the patient and family, she acknowledges that prayer is really part of the chaplain‘s role and offers to —give the chaplain a call.“
103 My interviews highlighted numerous situations where patients and families would initiate role overlap. That is, the worker would find her/himself stepping outside of her/his official role responsibilities at the request of the patient and/or family. Clients asked nurses to pray with them, social workers to read from a bible, certified nursing assistants to listen and offer emotional support, and so on. Many participants seemed to feel that this patient/family-initiated role overlap is normal and inevitable, and they rarely described themselves as surprised or put off when it happened. It seems to me that perhaps many participants are used to these situations arising precisely because hospice provides, by definition, holistic care. While Crossings as an organization may view its workers‘ roles as separate and distinct, it seems that, at least in some situations, patients and families may not. During this difficult time patients and families are (understandably) clinging to whomever they can. When a person is on his/her deathbed and s/he wishes to pray, probably the last thing on his/her mind is, this is a social worker, not a chaplain. Many participants who cited situations where a patient or family initiated role overlap seemed comfortable stepping outside their role. They pointed out that —That‘s the point of hospice, we provide whatever the patient needs.“ On the other hand, many participants spoke of role overlap in significantly more negative terms. They seemed offended by the blurring of responsibilities. Participants made comments including, —He stepped on my toes,“ —She was trying to do my job and I was pissed,“ and —She just needs to butt out and realize that‘s not her role.“ Nurse Samantha recalls: S: —Actually the chaplain who came on to my team came from another team, and he left that team because the nurses decided he wasn‘t doing enough spiritual work with the patients. And he was getting offended because sometimes they were sitting and praying with the patients and doing some things he felt was his realm, and for whatever reason they felt he wasn‘t doing that, so they felt they had to take it upon themselves to do it. So I‘ve seen that happen.“ G: —Wow, so the resolution was that he switched.“ S: —Yeah, he just left the team.“ G: —Right, but if he had stayed on that team, how does that get handled?
104 S: —I understand that particular supervisor did try to have some conversations with the nurse, you know, ”You need to respect him and let him do his job, you might think you know what is best, but there needs to be a balance here. You know, it‘s ok to talk about some spiritual issues, but you shouldn‘t try to take over that role either.‘“ Samantha‘s story reveals how there are times when workers become offended when other Team members perform aspects of their role. This team‘s supervisor apparently tried to delineate between roles, suggesting that the nurses let the chaplain do his job, so to speak. However, the chaplain was so offended he ultimately switched to another Team. Samantha‘s story, and comments other participants made during my interviews, demonstrate how there are situations where workers do not view role overlap as natural, inevitable, or favorable. On the contrary, there are situations where role overlap is viewed as a personal affront. That is, sometimes participants felt that their role was being encroached upon by another worker. I have just explained how in many situations participants have a negative reaction to role overlap. From my interviews I learned that, ironically, there are situations where role overlap occurs and the worker is subsequently offended, but for a completely different reason. Some workers as I just explained get upset with role overlap because they feel another worker is stepping on their toes by trying to do their job. However, there are apparently other situations where workers get upset about role overlap, because they view it as being forced upon them by another worker. Social worker Ida explains how this can happen: —In a lot of teams I‘ll hear so many social workers say, —The nurses tell me can you go do this or that,‘ but that‘s something the nurse should be doing. Like they have to confront the nurse and say, ”But that‘s not my job, I can‘t do that.‘ One of the social workers was telling me she was picking up meds for the pharmacy, and having to drop them off at the patient‘s house, and I just really disagree with that, and I told her that, because, you can‘t even explain, you don‘t have the license, that capability, that allows you to talk to the patient about any kind of medical -- One thing is to pick
105 up meds from the pharmacy and maybe take them to the office and let the nurse pick them up there, but you can‘t talk to the patient about the meds.“ Ida‘s story illustrates how sometimes Team member 1 will expect Team member 2 to take care of responsibilities that are actually part of Team member 1‘s professional role. As described by Crossings‘ literature, nurses are supposed to provide medical care, including the administering of medication. Social workers are supposed to provide psychosocial care and guidance with social services. However, Ida and some other participants described situations where social workers were asked by nurses to do nursing tasks, such as dropping off medications at a patient‘s home. One might argue that these nurses only wanted the social workers to drop off the medications but did not expect them to explain the medications to the patient and/or family. However, we have seen that because hospice provides holistic care, patients and families often initiate role overlap. In my opinion, it should come as no surprise that if a social worker drops off medications and the patient/family has a question about the medications, then they will most likely ask the social worker simply because the social worker is the Crossings employee who is there at that time. Irrational Consequences Many hospices have increased their division of labor in response, at least in part, to the shift in U.S. health care to a more business-like orientation. Studies show that as health care organizations compete for clients and reimbursement, they often become more rationalized. That is, these organizations follow the Weberian model of becoming more routinized, bureaucratized, focused on efficiency and quantifiable outcomes. Division of labor is an attempt by these organizations to maximize efficiency and therefore increase productivity (Monahan 2003; Ward and Gordon 2006). Division of labor is one result of an increasingly rationalized workplace. However, many of my study‘s participants explained that there are times when this division of labor actually can adversely affect patients and families. Something that came up in countless interviews was how many of these workers felt badly for their patients and families, because of the repetition in hospice work. Social worker Dara comments: —The repetitiveness. That‘s one of the things families get upset with is because, especially in the beginning, when everybody‘s coming in to do
106 their assessments, a lot of times they‘re asked the same questions over and over again. And you know I apologize upfront and I say, ”I‘m sorry, I know this is really repetitive for you, but you know, it‘s just one of those things.‘“ Dara‘s comments explain how patients and families can find themselves fielding the same questions time and again. Numerous participants talked about this repetition, and how they were upset because the patients and families would get upset. One worker who wished to remain anonymous put it bluntly: —It sucks, you know? I go in and ask them blah blah blah. Then the next Team member goes in and asks the same damn thing. Then the next and œ I mean, it‘s ridiculous! And believe me, I know what these families feel like. My husband died on hospice [a few] years back, and I remember when he was on it it was the same goddamn thing. It‘s frustrating, because I feel terrible for these families. Their loved one is dying œ dying! And they have to answer the same fucking questions like five million times! It‘s crazy is what it is. I really don‘t get why we can‘t just have one person go in, ask all the questions, then fucking document, period. Why do we all have to ask‘em the same shit?“ This worker‘s comments reiterate, albeit more strongly, Dara‘s point, that some patients and families become frustrated with the repetition within hospice work. I suggest, however, that this repetition is not natural nor a coincidence; it is the direct result of Crossings‘ highly specialized division of labor sounding solid in theory but failing in practice. That is, Crossings delineates workers‘ roles as if they are completely separate and distinct from one another. However, in practice roles overlap, often because patients and families (understandably) resist being so compartmentalized. Because Crossings‘ division of labor is actually in practice false, role overlap leads to patients and families facing repetitive questions from multiple hospice Team members. Max Weber explained that division of labor is a purposeful tactic by bureaucracies to maximize efficiency and therefore increase productivity. However, Weber warned of the dangers of rationalization taken too far. He feared and predicted that a highly rationalized workplace could ultimately lead to irrational consequences for its clients as well as
107 workers. George Ritzer (2000) calls this —the irrationality of rationality,“ and this seems to be happening at Crossings Hospice. According to these participants, the repetition of questions by different hospice workers frustrates many patients and families. In my opinion this is highly ironic, because frustrating its clients is really the last thing hospice wants or is trying to do. Hospice by definition seeks to provide patients and families a peaceful, comfort-filled, dignified process of dying and grieving (Chapter 2). So it seems that Crossings‘ attempt to increase efficiency through a complex division of labor potentially has irrational consequences for both its clients as well as workers. First, this division of labor has irrational consequences for this organization‘s clients. Some patients and families are being aggravated by the very organization that is supposed to comfort them. Second, this division of labor has irrational consequences for this organization‘s workers. Its workers, at least many of my study‘s participants, are frustrated for their patients and families. This frustration only adds on to the other pressures they are under, such as quantitative and qualitative role overload. Furthermore, the fact that patients and families become aggravated can make the worker‘s job even more difficult. Workers spend time and energy having to justify or at least apologize for the repetition with which they themselves disagree. That is time and energy that could be spent on achieving the true goals of hospice. To summarize, so far I have explained how Crossings Hospice, like many other hospice organizations in the U.S., has developed over time a highly specialized division of labor. This seems to be a purposeful attempt by these organizations to compete for clients and reimbursement in an increasingly bureaucratized and corporatized health care system. This division of labor has led to three main consequences for my study‘s participants. First, some participants feel alienated from the hospice process. They regret how their roles are so delineated by the organization that they cannot accompany their patient throughout the entire —journey.“ Second, although this division of labor has the appearance of distinctly separate roles, in actual practice workers‘ responsibilities overlap. There are some situations in which my participants view this role blurring as inevitable and acceptable. However, there are times when this role ambiguity adds to these workers‘ stress because they feel that a Team member is —stepping on their toes“ or placing them in an inappropriate position. Finally, this division of labor can have
108 irrational consequences for both clients and workers, who become frustrated at the repetition subsequently inherent in hospice work. Now I turn to two strategies my study‘s participants use to cope with these challenges. First, they try to keep the lines of communication open with other Team members as well as with their patients and families. Second, they constantly remind themselves of the mantra —It‘s not about me; it‘s about them.“ Coping Strategies Keeping lines of communication open. I have explained that role overlap among hospice Team members often occurs, and that there are situations where participants feel that another Team member stepped on their toes or put them in an inappropriate position. In order to deal with these challenges, many of my study‘s participants try to keep the lines of communication open with other Team members. They hope that by talking about disagreements and listening to one another, they can address or perhaps even avoid significant conflict. Music therapist Bess says: —[The team] is like a family, there‘re relationships. So just getting to know each of them . . . . You know, I think we‘re people. I think at times, particularly in one of my Teams, there‘s some miscommunication, some respect that‘s not happening for certain members of the Team. I think we forget that every person on that team has a distinct role in that patient‘s life and in their care, and so really making sure we really listen to each other, especially during IDG meetings . . . . I think that just finding a way to make that happen, because we‘re only going to serve our patients better if we‘re working together.“ Bess emphasizes the importance of solid communication among Team members, which involves both discussing as well as listening. Bess and many participants spoke of the importance of IDG meetings. IDG refers to Interdisciplinary Group Meetings, where a Team‘s members will meet to discuss each patient and any issues that have arisen among the Team. Nurse Kim reiterates the importance of IDG in addressing potential conflicts as well as managing patient care:
109 —That‘s why we talk about [disagreements] in the Teams. And that‘s why the interdisciplinary meeting is good every week, to talk about the patient and then get input from different people.“ Many participants maintained that IDG meetings are crucial in keeping the lines of communication open. This might be a problem-oriented strategy these workers use to address the challenges that may arise from role overlap among Team members. IDG meetings are a structured time in which Team members can discuss each patient‘s plan of care. If a worker feels that her/his toes have been stepped on, or that s/he has been placed by another worker in a difficult and/or inappropriate position, then IDG is an opportunity to voice those concerns and hopefully deal with them. Perhaps communication in the IDG meetings is a form of adaptive coping, because these workers use the meeting as a means of circumventing or, if they have already occurred, dealing with conflicts that arise due to role overlap. I feel that communication in the IDG meetings perhaps is also an emotion-oriented coping strategy. From my interviews it seems that many workers feel that even in situations where perhaps the conflict is not easily resolved, that they appreciate the chance in IDG to simply air their grievances. In these situations the specific problem/conflict has not been solved. However, the IDG meetings give workers the opportunity to try to deal with the emotional effects of role overlap. In some situations participants seemed to be content with airing their views in the meeting. Their satisfaction with simply being heard strikes me as evidence that the strategy has been adaptive. In other situations, however, some participants seemed to feel that while they appreciated the chance to speak up, they were dismayed because they felt their complaints —fell on deaf ears.“ Their dissatisfaction strikes me as evidence that the strategy here has been maladaptive. IDG meetings are an opportunity for hospice workers to address conflicts that arise between Team members due to role overlap. I learned from my interviews that IDG also is a way for workers to address the irrational consequences role overlap holds for patients and their families. I explained earlier that many participants complained that Crossings‘ division of labor frustrates some patients and families, who are faced with repetitive questions and assessments from different Team members. Some participants explained that IDG is a structured time where Team members can keep each other up to
110 date on a particular patient‘s care. These participants suggested that IDG can help decrease the amount of repetition patients and families face. In other words, if during an IDG a Team member gives a synopsis of a patient‘s plan of care and progress, that means that perhaps another Team member will not ask the patient or family the same exact questions in the future. Finally, many participants emphasized that IDG is an excellent opportunity for workers to communicate about and organize —joint visits.“ A joint visit is when two or more Team members will visit the patient and/or family at the same time. For example, the social worker and chaplain may decide to —team up“ and visit a patient together. I gathered from my interviews that joint visits are a common and very purposeful occurrence. Workers often spoke of how during IDG they would decide to —tag team it“ and visit a patient together precisely in order to avoid some of the repetition that can result from Crossings‘ highly specialized division of labor. Organizing joint visits appears to be a problem-oriented coping strategy, because it is a conscious and purposeful technique workers use to try to decrease the irrational consequences of division of labor for their clients. In many cases joint visits work, and so I would say that generally this strategy proves to be adaptive. In addition to keeping the lines of communication among themselves, these hospice workers also seem to try to keep the lines of communication open with their clients. I explained earlier that many patients and families become frustrated with the repetition that stems from Crossings‘ division of labor. I quoted social worker Dara, who explained that she often finds herself apologizing to her patients and families for this repetition. Dara‘s comments reiterate those of other participants, who also spoke of trying to apologize for the repetition and/or justify it to their patients and families. Communicating openly with their patients and families seems a problem-oriented strategy, but, depending on the patient‘s/family‘s response, this strategy may prove adaptive or maladaptive. In cases where the worker‘s apology or justification placates the client, perhaps the strategy has been adaptive. However, in cases where the worker‘s apology or justification does not satisfy the client, or sometimes the client becomes even more frustrated, then maybe the strategy has been maladaptive.
111 In sum, Crossings Hospice‘s highly specialized division of labor has consequences for both its workers and clients. Role overlap often leads to conflicts among hospice Team members, and the delineation of workers‘ roles often leads to repetition that is frustrating for both workers and clients. Many participants in my study try to cope with these challenges by keeping the lines of communication open. That is, they try to communicate with each other to avoid or address stepping on each other‘s toes. They discuss patient care and conduct joint visits to try to minimize the repetition their clients face. They also communicate with their patients and families to try to apologize for or justify this repetition. Remembering —it‘s not about me; it‘s about them“. I have explained that Crossings‘ complex division of labor makes some of my participants feel alienated from the hospice process. That is, they regret having to —pass off“ their patient to another hospice worker. My participants seem to me upset for both their patients and families as well as for themselves. They seem upset for their patients and families, because all of a sudden they (patients and families) find themselves being served by a new hospice worker that may be a stranger to them. My participants also seem upset for themselves. Their comments convince me that they are being denied the emotional closure they need and that comes (at least comes more easily) with seeing a patient through the entire hospice process. Because division of labor is a tactic used by Crossings and other U.S. hospices, it seems to me that these workers have few options in how to cope with these challenges. That is, it‘s not like they can somehow change Crossings‘ organizational structure or the entire hospice movement itself. As a result, the coping strategy I find that my participants use is that they constantly remind themselves of the mantra I heard time and again throughout this project: —It‘s not about me; it‘s about them.“ In Chapter 4 I discussed how —It‘s not about me; it‘s about them“ is an integral characteristic of hospice practice. This mantra means that hospice —starts with the patient and family,“ and that hospice workers —leave themselves out of it.“ That is, hospice workers strive to serve their patients and families without judgment or reservation. Hospice work is not about the worker‘s opinions, feelings, religion, culture, and so on. Rather, hospice work is about starting where the patient and family are and going from there. However, I also discussed in Chapter 4 how —It‘s not about me; it‘s about them“
112 also strikes me at times to be an emotion-oriented coping strategy. For example, when workers find themselves in disagreement (perhaps due to religious or cultural differences) with a patient and/or family, some workers (try to) put their own feelings aside and give control to their clients. —It‘s not about me; it‘s about them“ ultimately helps these workers to let go of the emotional implications of their work. That is, they rationalize in their minds (hearts?) that the decisions are ultimately up to the patient and family. The worker has done the best s/he can do, now just let go. I find that many of my participants use this same type of strategy when dealing with the challenges posed by Crossings‘ division of labor. Because they end up having to —pass off“ their patients, some of these workers clearly feel alienated from the hospice process. Again, because division of labor is a tactic used by hospice organizations in general, I feel that these workers have few options when trying to manage their feelings of alienation. Perhaps that is why many participants resort to this emotion-oriented coping strategy of reminding themselves —It‘s not about me; it‘s about them.“ That is, these participants try to put their own feelings aside and justify in their own minds/hearts that no matter how they may personally feel, —at least the patient is still getting really good care, even if it‘s from another worker.“ This strategy may be a form of maladaptive coping, because all the time that these participants are making these rationalizations, they (like Dara and Trudy) still seem highly upset and frustrated. This strategy generally does not appear to help them manage their feelings of alienation. To summarize, hospices over time have developed a highly specialized division of labor to maximize efficiency and increase productivity. The strict delineation of workers‘ roles is a tactic hospice organizations use to compete in the increasingly bureaucratized and corporatized U.S. health care industry. Hospice organizations like Crossings find themselves fighting for clients as well as for reimbursement. Now I turn to that final component of hospice becoming more like a business. As these organizations œ for profit and not-for-profit alike œ clamor for government reimbursement of services, the issue of cost containment becomes paramount.
113 Cost Containment In Chapter 2 I discussed the origins of the hospice movement and how it has changed significantly since its inception. I explained that a key development in U.S. hospice practice was the Medicare Hospice Benefit created in 1982 and made permanent in 1986 (Abendroth 2005; Miller and Mike 1995; Mesler and Miller 1996; Monahan 2003; NHPCO 2008; Ward and Gordon 2006). According to the National Hospice and Palliative Care Organization (2008), over 90% of hospices are certified by Medicare. Around 80 percent of people who receive hospice care are over the age of 65 and hence are entitled to the services offered by the Medicare Hospice Benefit. Furthermore, Medicaid in 47 states and D.C. as well as most private insurers cover hospice services. Government reimbursement has greatly affected U.S. hospice practice. On one hand, government reimbursement has helped bring legitimacy, visibility, and accessibility to the hospice movement (Mesler and Miller 1996). On the other hand, hospice organizations‘ reliance on government reimbursement has led to an increasingly rationalized and bureaucratized workplace (Monahan 2003; Ward and Gordon 2006). For example, there are many rules involved for receiving hospice services. The patient must be eligible for Medicare Part A (hospital insurance). The physician and hospice medical director must certify that the patient is terminally ill, meaning that s/he has six months or fewer to live. The patient must sign a statement that s/he is opting for hospice care rather than other Medicare benefits for his/her terminal condition, and s/he must receive services from a Medicare-approved hospice program (NHPCO 2008). In this era of government reimbursement, issues of cost containment especially have arisen, because now hospice organizations must consider what types of services government will and will not pay for (Dahlin 1999; Mesler and Miller 1996; Miller and Mike 1995; Monahan 2003; Ward and Gordon 2006). Of special importance is that the Medicare Hospice Benefit only covers comfort care; it does not cover curative treatments. If the patient desires treatments that are considered aggressive and cure- oriented, then s/he must revoke (de-enroll out of) hospice (NHPCO 2008). The issue of cost containment came up countless times in my conversations with Crossings‘ workers. From my interviews I learned that many workers are upset by Crossings‘ attempts to control costs internally. However, it is Crossings‘ need to adhere
114 to government reimbursement rules that especially frustrates my study‘s participants. Crossings‘ focus on external cost control poses many challenges for these workers. First, many participants feel that cost control threatens their relationship with their clients. Second, government reimbursement has increased the need for documentation, which contributes to these workers‘ role overload. A third challenge arises from the government‘s mandate that only comfort-oriented, not curative, treatments, are covered. Although at first glance the line between care versus cure may seem clear-cut, in practice this line often becomes blurry. Finally, government reimbursement has led to Crossings‘ prioritization of —medical“ care over —non-medical“ care. I place these terms in quotes because, as I discover, these categories are not as clearly defined and delineated as they may at first sound. Internal Cost Control Although a not-for-profit organization, Crossings Hospice is under pressure to prioritize financial issues because of the increasingly competitive U.S. health care arena. Many participants in my study resent Crossings‘ tactics of internal cost control. One worker who wished to remain anonymous says: —I think we that we should get paid higher salaries and we are specifically in a very very expensive county in the nation. And I appreciate that they pay us the highest that the government will allow for reimbursement on gas and everything, but with the number of miles we put on our cars, it certainly helps, but, with gas keeps going up, it‘s not enough . . . . I am on my husband‘s insurance, I changed to that because they [Crossings] changed to [current health insurance company], they had been on [previous health insurance company] which was wonderful, but then they went to [current health insurance company], and they had us take a survey, and nothing changed. I mean, so many people, they even had the percentages, and it said the insurance, they got rated really low on that. But they didn‘t change. And they‘re not going to change. They just said, ”Oh well, you can speak with a representative who‘s available.‘ And so it‘s like, some of us have talked about this, that we felt like that was a reflection on ok, so, why did you, I mean, I know you want to save money
115 and everything, but [current insurance company] was just one of the worst. You could never get approved for things, and everything took so long. It was just one thing after another. So I went to my husband‘s, I was like, I don‘t care, I‘ll pay more, because at least I know it‘s solid. And we felt like that‘s kind of a reflection on ”is that how you look at us?‘“ This worker voices œ in her/his words as well as tone of voice œ the frustration that many participants feel about Crossings‘ attempts to control costs internally. S/he explains how their salaries do not meet their location‘s extremely high cost of living. S/he also raises the issue of reimbursement for gas. Earlier I noted how many participants spend a great deal of time driving to different locations to visit their patients. This driving around has greatly increased in the last few years because of Crossings‘ focus on expanding its client base. Participants drive to different work settings, and this is exacerbated by them having to see more and more patients, many of them in their own homes. This adds to these workers‘ quantitative role overload. However, the important point here is that these workers not only spend time driving around, but they also spend money, because that‘s more and more miles they are putting on their cars. This worker acknowledges that Crossings pays the maximum amount allowed by government rules for gas reimbursement. However, s/he is quick to point out that with gas prices continuously on the rise, this reimbursement is simply not enough. Finally, this worker complains of Crossings‘ switch to another health insurance company for employee benefits. Many of my participants vehemently said that the current health insurance company —sucks“ and that —its crappy reputation is justified.“ Although Crossings made a gesture of caring about its workers‘ opinions by having them do a survey, this worker (and others) points out that in practice, Crossings does not seem to care. While the survey‘s results vividly showed workers‘ discontent with the switch, Crossings has not gone back to the original company. External Cost Control While many participants complained about Crossings‘ tactics of internal cost control (including insufficient salary, gas reimbursement, and employee health benefits), even more participants worry about Crossings‘ reliance on government reimbursement. Hospice strives to provide comfort care to dying patients and their grieving families,
116 regardless of their (in)ability to pay for these services (Chapter 2). However, in today‘s increasingly competitive health care industry, hospice organizations œ even not-for- profits like Crossings œ find themselves focusing on financial concerns. Some workers worry, like social worker Ida, that —the government‘s cutting more costs, so it becomes harder, then there‘s less and less quality of care, whether its medications for the patient, or staff to take care of the patients. It goes back to how we treat our elderly, it has a huge impact. We are a very giving country, but we don‘t tend to be very communal, we don‘t take care of our own.“ According to many of my study‘s participants, Crossings Hospice‘s focus on external cost control raises numerous challenges. Participants especially worry about the intrusion upon the worker-client relationship, additional work overload, blurry line between care versus cure, and prioritization of —medical“ over —non-medical“ care. Threat to worker-client relationship. Patients and families enroll in hospice in one of the most emotionally daunting times of their lives œ when someone is quickly approaching the end of his/her life. Many participants spoke of this time as —precious,“ —invaluable,“ and —sacred,“ and they vehemently maintained that financial matters should —take a backseat“ and/or —not be involved at all.“ However, Crossings‘ attention to matters of money at times is forced directly into the worker-client interaction. Social worker Dara says: —I have kind of an issue I‘m dealing with now as far as one of the responsibilities I‘m supposedly supposed to be doing in this position, which is all tied into finances. Where we‘re supposed to work with the families as far as financial information and I get these little emails from accounting that says ”Please fill out a need for assessment.‘ And I have an issue personally like if the family is grieving or there‘s anticipatory grieving, you know, working with somebody, and then be like {switches from soft nurturing voice to a loud sarcastic, phone-service type voice} ”Ok. Let‘s bring out some financial and how much do you bring home each month?‘ It‘s not my style, you know, and I feel like, you know, this is a not-for-profit agency? And here I‘m very preoccupied with having
117 financial papers and I don‘t feel comfortable . . . . I‘m here, I‘m nurturing, I‘m approachable, and I feel like I kind of put the rapport that I‘ve developed and worked so hard to establish in jeopardy when I start flipping over, and I can‘t help thinking in the back of my mind how these families are really thinking, ”Oh yeah, this is really about money and how they‘re gonna get paid.‘ And personally I don‘t really give a shit how hospice gets paid but they do up in the accounting department.“ Dara views Crossings‘ attention to money matters as encroaching upon the delicate relationship she is carefully fostering with her patients and families. It seems to me that Crossings‘ focus on money is causing workers like Dara to experience role conflict, which is when a worker must meet two simultaneous but contradictory demands (Chapter 2). On one hand, as a social worker Dara‘s role (as described by Crossings‘ own literature) is to provide emotional support to her clients. To fulfill this role Dara needs to project herself (impression management) as caring, compassionate, nurturing, and approachable to her patients and families. On the other hand, Crossings‘ focus on money forces Dara to discuss financial issues with her clients. Dara consequently experiences role conflict, because being nurturing versus talking about money are in direct contradiction to one another. The result is that Dara and other workers worry that this introduction of fiduciary matters to a supposedly sacred, intimate interaction threatens that very relationship. Many of my study‘s participants fear that bringing up financial matters threatens the intimate relationship that they are trying to cultivate with their patients and families. Their concern leads me to wonder if this threat will spread beyond the worker-client relationship to the U.S. hospice movement in general. Hospice traditionally has presented itself as an alternative to a bureaucratized, impersonal way of dying (Chapter 2). However, with the introduction of government reimbursement, hospice organizations are becoming more routinized and financially-oriented. I wonder if this rationalization of hospice will lead more people to question the sincerity of this so-called alternative way of dying. In The Social Transformation of American Medicine (1982), Paul Starr proposed that one way a profession gains legitimacy is for that profession to be based on —altruistic goals.“ In other words, a profession gains the public‘s confidence and support by
118 portraying itself as having benevolent goals and concerns. While historically hospice has precisely laid claim to altruism, it seems to me in this era of commodification of health care that hospice‘s claim to legitimacy may be in question. Increased need for documentation. Because record-keeping is a staple characteristic of a rationalized workplace (Weber; Monahan 2003; Ward and Gordon 2006), Crossings Hospice‘s reliance on government reimbursement has led to an increased need for documentation. A few participants acknowledged that sometimes they use paperwork to help cope emotionally with their work. For example, Social worker Margie recalled occasions where she was particularly emotionally drained from meeting with a patient because —You know, you fall in love with them.“ There were times that in order to refocus and regain her composure, she would purposefully tackle her paperwork as a diversion. After doing paperwork for a bit of time, she then was able to move on to her next patient. From my interviews, however, I learned that appreciating paperwork is the exception rather than the norm. Generally I found that the increased need for documentation poses challenges for these hospice workers. Numerous participants complained how they spend a great deal of time filling out paperwork and doing computer charting. Participants made comments including —My day begins and ends with paperwork,“ —Sometimes I cut off a patient because I know I have to get back to my car and fill out a crapload of paperwork,“ and —It‘s ridiculous. I have to do the paperwork, then I have to do the same damn thing on the computer. It gets to be a real pain the behind.“ Judging from their comments it seems to me that Crossings‘ emphasis on documentation adds to these workers‘ stress. As I explained earlier, these workers already experience role overload due to Crossings‘ expansion. They are being forced to visit more and more patients, care for higher-acuity patients, and travel to/work in a variety of settings. Increased paperwork and computer charting add more tasks that these workers must complete within a finite amount of time. Besides adding to their already tremendous workload, the increased need for documentation also may threaten the worker-client relationship. Bereavement counselor Kyle observes:
119 —The social worker on the Team is busy filling out forms, dong assessments, placements, stuff like that, and I always felt that if you‘re in a case management role, which is pretty concrete and task-oriented, it‘s very difficult to blend that with the exploratory, kind of airy business of emotions and processing . . . . It‘s a different mode. I just think it‘s a different mode, and if you get into the task-oriented or that kind of business, it‘s real hard. It‘s like you‘re being efficient in a certain sense, and you‘re not going to be able to go back and talk to that person about how they‘re feeling.“ Kyle‘s comments remind me of social worker Dara, who complained that having to bring up financial matters can disrupt the rapport she is trying to cultivate with her patients and families. Kyle points out that the focus on documentation also can interfere with rapport-building, which is so crucial to the hospice worker-client relationship. His comments lead me to think that documenting can pose a role conflict for these workers, because they are having to balance between being nurturing and approachable versus being efficient and productive. No curative treatment versus open-access. Crossings‘ need to adhere to government reimbursement rules raises a third challenge for hospice workers. The federal government mandates that only comfort-oriented, not curative, treatments, are covered. As I explained earlier, the rules of the Medicare Hospice Benefit state that a patient who opts for hospice care must agree to forgo any further aggressive, curative treatments. The government will only pay for —hospice appropriate“ treatments, those that are meant to provide comfort care for that patient. Although the government‘s position regarding curative treatments is explicit, in actual hospice practice this becomes tricky. Earlier I discussed how Crossings‘ attempts to expand its client base has resulted in this organization taking a more —open-access“ approach. That is, Crossings (and many other U.S. hospices) are accepting increasing numbers of patients on treatments such as dialysis, chemotherapy, chest tubes, vents, and so on. This shift allows hospice organizations to serve more and more patients, a plus in such a competitive health care arena. However, this shift to a more open-access orientation poses challenges for hospice workers. On one hand their organization
120 requires them to care for these higher-acuity patients. My participants‘ opinions of this shift range from those who praise it for making hospice more widely available to those who dislike it for sometimes causing patients more physical discomfort. On the other hand the organization must justify its acceptance of these patients by maintaining that these treatments are indeed intended for palliation (comfort) and not cure. While at first glance the line between comfort versus cure may seem clear-cut, it seems to me that in reality this line is blurry at best. Nurse Margaret observes: —Oh, there‘s a whole lot of gray [between palliative and cure], I‘m a black and white kind of person and there‘s a whole lot of gray. I had a challenge with that when I came here. Basically if the therapy is prescribed, the prescriber really has to state whether this is meant for palliation and comfort or if in fact this is cure. I‘ll give you an example. I had a patient come into the program one time, she actually had been diagnosed with breast cancer ten years earlier. She had gone through chemo and surgery, and pretty much the cancer was at bay for about seven years and then she came back on the program. When she came back she understood that in order to come this is a life limiting disease process, and ”Yes I understand that,‘ and she wanted some chemotherapy prescribed from her physician, and I said, ”Well, we‘ll have to find out about that.‘ We don‘t just blanket approve it, it needs special approval, it has to go either before a palliative care committee or before the Team, because that will be dollars not covered by Medicare so it has to come from another source. So when we fill out the request for it, I need to know what her goal was. ”Well, I want to feel well enough to go to my granddaughter‘s ballet in three weeks.‘ Ok, she has a specific goal in mind, she wants this chemo because she believes it might help make her feel stronger so she can go to the ballet. That would be totally appropriate. But if she had said, ”Well, I want to have this, because I want my white blood cell count to go down so I can beat this thing,“ then that is not appropriate, that is cure, she is seeking curative therapy. So it‘s either curative or palliative by what the physician says it is, or what the patient perceives it is, that‘s my understanding.“
121 Margaret‘s detailed example reveals the actual complexity behind the supposedly clear-cut distinction between care versus cure. She and other workers explain that a treatment is hospice appropriate (i.e., reimbursed by government) if it is intended to provide palliation; a treatment is not hospice appropriate (i.e., not reimbursed by government) if it is intended to heal. Margaret says this distinction is very —gray,“ and I have to agree. It seems that the entire distinction between care versus cure is based on the issue of intent, whether that‘s the intent of the physician, patient, whomever. If the intent is to provide comfort, then that treatment is appropriate. If the intent is to cure, then that treatment is not appropriate. I suggest that intent is a murky concept at best, after all, how does one justify or prove —intent“? Here I am reminded of another principle in the field of medicine and law, the rule of —double effect.“ This rule came about because of the issue of euthanasia. Currently physician assisted suicide is illegal across the U.S. except for in Oregon and Washington. In all the other states, if a practitioner engages in physician assisted suicide, that is against the law and s/he may be prosecuted and sent to prison. This is how/where the rule of double effect comes into the picture. If a practitioner administers a pain medication such as morphine and the patient dies as a result of that medication, the rule of double effect kicks in. That is, the rule says that if the practitioner administered the medication in order to provide comfort to that patient (by easing the labor of breathing, for example), and that patient dies, the practitioner did not œ in the eyes of the law œ do physician assisted suicide, and therefore s/he cannot be prosecuted. If, however, the practitioner administered the medication in order to purposefully slow that patient‘s breathing so the patient would die, then œ in the eyes of the law œ the practitioner did do physician assisted suicide, and s/he can be prosecuted. So the distinction is based on intent. If the practitioner intended to provide comfort, then s/he is safe under the law. If the practitioner intended to hasten the patient‘s death, then s/he is prosecutable (Gostin 1997; Mariner 1997; Quill, Lo, and Brock 1997; Quill, Dresser, and Brock 1997; Vernacchio 1996). In sum, the government forces hospice organizations like Crossings to distinguish between palliative versus curative treatments, because only the former will be reimbursed. However, in practice this distinction becomes quite tenuous, because many
122 treatments can be considered either (Monahan 2003). I feel that workers like Margaret are absolutely right; the line between care versus cure is indeed quite —gray.“ Is the chemotherapy intended to provide temporary comfort so the patient can go see a ballet, or is it intended to increase her white blood cell count? The issue is intent. What is the intent behind the treatment? The answer is not always clear. In fact, it seems to me that the question itself is —gray.“ Prioritizing of —medical“ care over —non-medical care“. Finally, hospice workers face another challenge due to external cost control. Government reimbursement has led many hospice organizations to prioritize medical care over non-medical care (Monahan 2003; Sontag 1996a; Sontag 1996b; Ward and Gordon 2006). That is, Medicare requirements make central to hospice medical services such as supplies, equipment, and medications (Sontag 1996a; Ward and Gordon 2006), whereas services such as spiritual care and bereavement are not afforded the same value (Sontag 1996b; Ward and Gordon 2006). Like U.S. hospices in general, Crossings prioritizes —medical“ care over —non- medical“ care. I place the terms —medical“ versus —non-medical“ in quotes because these categories are not as clearly defined and delineated as they may at first sound. First, the distinction between —medical“ versus —non-medical“ in actual hospice practice becomes fuzzy because, as I explained earlier, a great deal of role overlap occurs among hospice Team members. For example, a social worker (—non-medical“) may explain a medication (—medical“) to the patient. Second, and I go into this in more detail later, the distinction between —medical“ versus —non-medical“ sometimes becomes fuzzy because some professions by definition span across the medical, psychosocial, and spiritual fields. For example, music therapists are trained and credentialed to address a patient‘s physical (medical) as well as emotional (psychosocial) needs. Integrative therapists are also trained and credentialed to address a patient‘s physical (medical) as well as emotional (psychosocial) needs, and much of their work has origins in various religions (spiritual). This is why I place the terms —medical“ and —non-medical“ in quotes throughout my discussion. I want to constantly remind the reader that these categories are misleading and stereotype-reinforcing. Despite these important limitations I still choose to use these terms, because, although technically inaccurate, that is precisely one of my main points.
123 This is how hospice organizations like Crossings as well as U.S. culture at large view these workers. My study‘s participants, including many nurses themselves, acknowledged that Crossings Hospice is a —nursing-run organization.“ This prioritization of medical over non-medical care poses challenges for many of my study‘s —non-medical“ participants, who complained that they are viewed by Crossings and by many —medical“ workers as —fringe.“ These participants œ primarily music and integrative therapists, social workers, and bereavement counselors œ said that —medical“ workers (physicians and nurses) —don‘t really know or understand what we do“ and —sometimes blow us off.“ From my interviews I began to understand how frustrating it must be for —non-medical“ workers to work in an environment where their profession is often misunderstood and/or devalued by Crossings and by their —medical“ coworkers. Music therapist Marcy gives an example of what happened during an IDG meeting: —So I was in my Team meeting, and a nurse . . . was giving her report on one of the patients, and she said, ”Oh, and the patient responds really well to the music and everything.‘ . . . . And I said ”Oh, there‘s a music therapist that comes in?‘ And she said, ”No no no, the music they [nursing home] play through the TV, there‘s certain music channels.‘ . . . . So she referred to that as music therapy. And she said to me, ”So we don‘t need you, I really don‘t know what it is that you could do.‘ . . . . So I said, ”Well, so, just to make sure I understand, playing the music that they play through the TV, that‘s music therapy to you? You‘re comparing that to what I do?‘ I mean, the nurse had absolutely no clue. Absolutely no clue! And I felt that she had really, a very poor understanding of music therapy, and I felt like she had really disrespected my profession.“ Marcy‘s story illustrates how the dominance of the medical model in the hospice profession contributes to —medical“ workers‘ lack of knowledge about other supposedly non-medical disciplines. This lack of understanding can lead to situations where a worker‘s profession is devalued. This devaluation often occurs in IDG meetings. Social worker Dara says:
124 —In general, social work tends to be toward the bottom of the totem pole. This is kind of a medical model, so nursing kind of steers the boat here, and I find that sometimes I have to really squeeze my way in a conversation, like in an IDG. They‘ll be talking about a patient ”Oh Mrs. Jones has stage 3 edema and dah dah dah and ok let‘s move on‘ and I‘m like, ”Excuse me, can I, you know, Mrs. Jones‘ son just went away and‘ œ You know, it‘s like sometimes they don‘t respect me as a social worker.“ Dara‘s comments resonate with Marcy‘s. They both encounter problems within the IDG precisely because hospice organizations including Crossings value —medical“ matters over psychosocial, spiritual, etc. ones. This prioritization of the medical model leads to misunderstandings because some workers do not understand what these participants do. This prioritization also perpetuates the devaluation of these workers‘ respective professions. Furthermore, some participants feel that the hospice organization itself does not understand their role either. Bereavement counselor Kyle explains: —And the organization at least, even though it‘s medically modeled, I think at least this one supports the bereavement department. They don‘t understand what we do, I think their version is that we‘re patting people on the back saying, ”Isn‘t that awful, have a seat,‘ that kind of light stuff when it‘s really much more complex. But at least we‘re allowed to have jobs doing this. And we feel we make a difference.“ Kyle‘s comments illustrate his belief that, because Crossings follows the medical model, Crossings itself does not fully understand or appreciate the difficult and complex work that bereavement counselors do. He thinks that the organization most likely views him and his colleagues in the bereavement department as —handholding.“ While his words and tone of voice reveal his frustration, he acknowledges that at least Crossings supports his department and lets them do their work. Crossings Hospice‘s prioritization of the medical model clearly poses challenges for its —non-medical“ workers, who feel that they and their professions are sometimes misunderstood and devalued by coworkers as well as by the organization. The dominance of the medical model also adds pressure to workers by making their work with patients and families more difficult. Again, bereavement counselor Kyle explains:
125 —Like when a nurse sees a family member crying at the death, and makes it a high risk referral that we [bereavement department] have to respond to immediately, it‘s a crisis intervention situation, that the basis for that was that they were crying a lot? And we say, ”And? Were they gonna shoot themselves?‘ ”No, they were crying.‘ I mean, that‘s the level of assessment skills that I‘m complaining about . . . . So that means we get a lot of mistaken referrals, or kind of stupid. We call the person [nurse] up and they‘ll say ”They need to be called right away,‘ ”Well, they‘re at the funeral today, so what do you want me do?‘ I mean you call and then you‘re intrusive. So we have people assessing the need for bereavement services that don‘t have the psychological insight about it . . . .“ Kyle‘s comments illustrate how the dominance of the medical model interferes with his work with patients and families. He asserts that —medical“ workers‘ lack of training in/understanding of psychosocial matters results in these workers making inappropriate referrals to the bereavement department. This adds to bereavement counselors‘ already daunting workload, because now they have to field through which cases are truly a crisis versus which cases seem to be a normal grief response. In other words, his coworkers‘ lack of understanding about his profession makes his work that much more complicated and time-consuming. Hospice organizations‘ prioritization of the medical model is, in large part, a response to government reimbursement rules. The Medicare Hospice Benefit emphasizes medical concerns over psychosocial and spiritual ones. However, I view hospice‘s reliance on the medical model as stemming from medicine‘s dominance in U.S. culture at large. The public tends to view the medical field as —hard“ science and therefore legitimate, whereas many in the public tend to view psychosocial issues as —soft“ and perhaps not as legitimate or important. In my view the fact that hospice organizations prioritize the medical model both reflects and perpetuates this cultural primacy of medicine. This adds yet another challenge for hospice —non-medical“ workers. Because of the dominance of the medical model in U.S. culture, some patients and families are also uninformed about —non-medical“ workers‘ professions and therefore are hesitant to accept their services.
126 Many of my study‘s —non-medical“ participants explained that some patients and families do not understand, value, or desire their services. These participants pointed out patients and families often will —just assume I‘m the nurse because I‘m from hospice.“ They also commented that —Nurses win, if I disagree, the patient‘ll go with the nurse,“ and —Lots of my patients think I‘m a musician, not a therapist.“ Social worker Dara says: —I‘ve had patients that don‘t want to see me. Or I‘ll call and say, ”Hi, I‘m Dara, I‘m the social worker from the [Team], I‘d like to set up an appointment.‘ ”What are you, are you the nurse?‘ And I‘ll say, ”No, I‘m the social worker.‘ ”Oh, you‘re just a social worker.‘ And I‘m like wow, I‘m not {emphasizing} just a social worker, but I‘ll get that all the time.“ Dara‘s comments illustrate the consequences of medicine‘s primacy in U.S. culture. Much of the public is familiar with and respectful of medical professionals such as nurses. However, some people view social workers, who provide emotional and psychosocial support, as less legitimate and therefore less important. Dara‘s frustration resonates with that of many of my —non-medical“ participants. The primacy of medicine in U.S. culture contributes to the public‘s lack of understanding about and even devaluation of these participants‘ professions. This adds stress to these workers‘ already heavy workload. Not only do these workers have to cope with lack of understanding and devaluation by their coworkers, but they also have to manage these issues with their clients. To summarize, U.S. hospice organizations like Crossings are more and more focused on financial matters. This stems from having to compete in an increasingly competitive health care industry as well as adhere to government reimbursement rules. Many participants resent Crossings‘ attempts to control internal costs, such as by switching to an —inferior“ health insurance company for employee benefits. However, from my interviews I learned that the bulk of their frustration stems from Crossings‘ attention to government rules of reimbursement. These rules pose challenges for these workers, including threatening the worker-client relationship, adding to their workload because of the increased need for documentation, blurring the line between curative treatment versus open-access approach, and prioritizing medical care over non-medical care. Now I turn to the strategies these workers use to cope with these challenges. Some
127 participants accept their working conditions begrudgingly. Many workers decouple themselves and their work from that of management. Many participants focus on educating their coworkers as well as patients and families, while some purposefully use their clients‘ lack of knowledge to their advantage. Finally, some workers resort to the mantra I came to hear so often, —It‘s not about me; it‘s about them.“ Coping Strategies Accepting begrudgingly. Although many participants voiced frustration with Crossings‘ focus on money, many seemed to me resigned to the situation. They made comments like —I doubt things‘ll change,“ —It‘s just the way it is,“ —Gotta just suck it up and accept it.“ It seems to me that these participants are accepting their working conditions begrudgingly. I use the term —begrudgingly“ to emphasize that these workers are not satisfied nor happy with their situation. They —accept“ their situation because they see acceptance as their only viable alternative at this time. I also use the term —begrudgingly“ because some participants suggested that their acceptance is temporary and conditional. That is, they accept their growing workload, low salary, and —inferior“ employee health benefits —for now. But if things get worse, then I‘ll probably just up and quit.“ These participants‘ begrudging acceptance of their work conditions seems an emotion-oriented coping strategy. That is, this technique does not address their actual work conditions nor offer any alternatives. Rather, this strategy is an attempt to manage their negative feelings about the situation. I view this strategy as a form of maladaptive coping. While these workers are indeed accepting their situation, they are doing so with resentment. I gathered from my interviews that this strategy ultimately does not seem to help improve these workers‘ emotional state. Decoupling from management. Another strategy these workers use to cope with Crossings‘ focus on money is to decouple their work and themselves from management. Studies such as Michael Burawoy‘s (1979) Manufacturing Consent reveal that sometimes discontented workers disassociate their practices from the rules of management. That is, at times workers will do things their own way, even bend/break workplace rules, precisely (and ironically) in order to get their job done.
128 Some of my study‘s participants seem to decouple their work from management to cope with their discontent with Crossings‘ focus on finances. These participants spoke of times where they —bent the rules“ and —ignored management.“ One worker spoke on condition of anonymity: —Yeah, I‘ve bent the rules. But that‘s because some of the rules are so damn idiotic. Like one time accounting emailed and wanted an assessment of this family. Well, this guy is dying of cancer see, and his daughter is crying, for real, on my shoulder, my shirt is wet. I‘m sitting there, my arm‘s around her, and I‘m supposed to do an assessment? ”By the way, how are your finances?‘ Are you kidding me? So I said fuck it, I‘ll do it another time. Accounting just had to wait. And I did that because I was actually doing the job I was supposed to do, you know? I‘m there to support the daughter, to comfort her, not to ask her about the fucking money! Anyway in the end it all worked out see, because my supervisor called me in to tell me the daughter had called her and raved on and on what a help I was, and ”This is great because that‘s what our organization is about.‘ So see? I bent the rules, but I needed to, and it worked.“ This worker‘s comments seem to me an example of decoupling. This worker disassociated her/his work from management. That is, by postponing the financial assessment s/he was technically bending/breaking the rules. However, s/he bent the rules precisely in order to get her/his job done, which is first and foremost to provide emotional support to patients and families. This worker points out that —in the end it all worked out,“ because management (Crossings Hospice and her/his supervisor) were pleased with the result. The patient‘s daughter was, for all practical purposes, a happy customer. From my interviews I learned that some workers decouple themselves from management in a symbolic but nevertheless important sense. Even if they do not bend the rules, they seem to me to distance themselves emotionally and/or ideologically from management. Social worker Wilma says: —They‘re some who are like, ”Wow, hospice is this really wonderful {breathy} like godlike organization, and they forget that there‘s really this
129 business part of this. So I always say the bean counters are upstairs, they‘re counting the beans, and they know what they need to do, and I‘m glad they‘re there, because I don‘t wanna be there. We‘re the hospice heart. We‘re doing the hospice work. We are hospice. Let them count the numbers and decide how much money we can have and how much we can‘t. I want to do the work.“ Wilma seems to disassociate herself from management in a symbolic sense. She refers to management as the —bean counters upstairs.“ She maintains that she and the other non-management workers are really the ones doing the actual —hospice work,“ that they are the true —heart“ of hospice. Her phrasing implies to me that she views herself and her coworkers as the ones doing the real work; the people —upstairs“ are doing something else. While she acknowledges that that something else is necessary, important, and she is grateful it‘s getting done, the actual —work“ is what she and her coworkers are doing. I noticed that in many interviews participants would use phrases like —upstairs“ and —up there.“ Some participants did not use these exact words, but when referring to management they would point up, as if to say —upstairs.“ This seems to me a form of decoupling. Even when workers are not bending/breaking the rules of management, they seem to disassociate themselves emotionally and/or ideologically from management. That is, these participants seem to feel distanced from management, which they express in geographic terms (management is —upstairs,“ with the implication the workers are on the ground, so to speak). Management upstairs is doing something that is important, but they and their coworkers are on the ground doing the real work. I view these workers‘ decoupling from management as both a problem-oriented coping strategy as well as an emotion-oriented coping strategy. Decoupling appears problem-oriented in that workers bend/break the rules precisely in order to get their job done. In many situations this tactic is successful, with both worker as well as organization/supervisor happy with the results. Therefore this coping strategy may be adaptive. On the other hand, I view decoupling as emotion-oriented as well. Perhaps disassociating themselves symbolically from management is a way for workers to cope with their discontent at Crossings‘ focus on money. They convince themselves that no matter what is going on —upstairs,“ they are the ones doing the true hospice work. While
130 some participants seemed relatively satisfied with this division between themselves and management, others seemed uncomforted. Therefore this coping strategy appears adaptive as well as maladaptive, depending on how the worker ultimately feels about the situation. Educating team members. As I explained earlier, hospice organizations‘ focus on financial rules has led to the prioritization of medical care over non-medical care. Many of my study‘s —non-medical“ workers voiced their frustration with the primacy of the medical model in Crossings. They complained that their —medical“ coworkers sometimes misunderstood or even devalued their profession. A theme that came up often in my interviews is that many —non-medical“ workers try to educate their hospice Team members about their profession. Sometimes these workers take a direct approach to educating their Team members. That is, they explicitly explain their work. More often these workers take a more subtle approach to educating their Team members. They model, i.e., teach through example. Sometimes participants take a direct approach and explicitly explain their work to the Team. For example, music therapists described to me the —Fast Fact,“ which is when during an IDG they will take a few minutes to explain something to the Team about music therapy. They pointed out that the Fast Fact is the perfect time to debunk some of the myths about music therapy. For example, they are not —musicians,“ they are not there to —entertain,“ they are not the —pretty lady who‘ll whip out my guitar and sing a happy song for you.“ They are therapists. Music therapists use music as a means to help a patient with the physical as well as emotional aspects of the dying process. They use music, for example, to help facilitate breathing, decrease anxiety, and manage agitation. They also use music to help conjure memories and to provide emotional comfort and counseling to the patient and/or family. They have a music therapy degree and are trained in physical/medical as well as emotional/psychological matters. From my interviews I began to understand that workers often engage in impression management when explaining their profession to other Team members. That is, they consciously decide how to phrase their explanation of their work. Integrative therapist Mike explains:
131 G: —So do you feel in general that your work as integrative therapist is valued by workers who are from different disciplines? M: —I think now because of our boss here, Hillary, because of the way she‘s had us, she‘s organized this in a way where we present this in such a professional manner œ I can present things that I believe that‘ll sound really wild and outrageous to some people œ but if you present them in a more professional, medical, kind of way, people start to accept.“ G: —Can you give an example?“ M: —Sure. I could talk about how reiki started, and how it came from Buddhism, and œ or, if you just say, ”Look, my hands get really warm, and when they warm up, I put it on certain parts of the body that goes into the nervous system and relaxes the body.‘ People accept that. They don‘t think it‘s hokey and pokey, they say, ”Ok, sounds good, let‘s do it.‘ But if I don‘t explain it that way, then they‘re gonna think ”Oh, you think you‘re a faith healer?‘ So you explain it. And then the doctors see, ”Oh, wow, he‘s not presenting this as hokey pokey,‘ they start treating you, they‘re now starting to respond as we‘re all on the same level, so to speak, with respect for the different degrees.“ Mike‘s comments illustrate how he explains reiki in terms of what it does physically to a patient. Rather than emphasizing its origins in religion, he chooses to explain it in a —professional, medical kind of way.“ I was struck how Mike himself seems to equate —professional“ and —medical.“ This seems to me to reflect the dominance of the medical model in U.S. culture at large. Even some workers themselves subscribe to this idea that the medical model is professional and legitimate, whereas other matters, such as spirituality, are less so. It seems to me (and I may be incorrect, this is merely my perception) that Mike is perhaps not overtly aware that he is equating professional and medical. It seems to me a way of thinking he has slipped into because of U.S. culture. On the other hand, it seems to me that some workers use impression management in a very purposive and conscious way when explaining their profession to other Team members. Gilda explains how she educates Team members about music therapy:
132 —When I educate doctors I will bring medical journals and objective data. But if I‘m taking the social worker out I talk about how we work on feelings and that. So you have to totally tailor it to whoever it is you‘re talking to.“ Gilda‘s comments illustrate how she purposively emphasizes different aspects of music therapy, depending on whom she is educating. She acknowledges that because hospice workers come from different disciplines, she takes that into consideration when explaining her profession to Team members unfamiliar with music therapy. While sometimes workers directly educate the Team about their profession, in many situations my participants take a more indirect approach of teaching through example, i.e., modeling. That is, these workers perform their work with the patient/family in front of another Team member in order to demonstrate that their work is effective and credible. Again, music therapist Gilda explains: Gilda: —I think the best way is to take someone out in the field and let them see it. That‘s the best way, by far, that‘s how you win them over. Because when someone actually sees it then they get it. And that‘s one of the most rewarding parts of the job, for me, to take someone out in the field who really didn‘t buy it, and then see them get it, and then your whole relationship with them changes.“ Gina: —You‘ve had this happen?“ Gilda: —Oh yes.“ Gina: —Can you talk a little about that?“ Gilda: —It‘s happened with nurses who never gave referrals and you would talk during the meeting and they would just sit there and write their notes and not pay attention to you, and then you happen to show up at the patient‘s house at the same time one day, and they see a session and afterwards they‘re like ”That‘s what you do? I had no idea!‘ And then they‘re like, ”I‘m gonna refer all my patients to music therapy now!‘ {laughing}“ Gilda‘s story reveals how some participants educate through modeling. That is, they do their work in front of their coworker so the coworker can see for her/himself the
133 techniques involved and the benefits gained by the patient and/or family. She points out that sometimes this is more effective than just explaining, because —when someone actually sees it then they get it.“ In sum, because hospice organizations like Crossings prioritize the medical model, some —non-medical“ workers find their professions misunderstood and sometimes devalued by their —medical“ coworkers. Many of my study‘s participants try to deal with this challenge by educating their coworkers. Sometimes they take a direct approach and explicitly explain their profession to other Team members. They often engage in impression management, carefully choosing their words when explaining their profession. More often these workers take an indirect approach by modeling. They teach their coworkers the techniques and benefits of their profession by performing their work in front of them. Educating Team members, whether directly or indirectly, seems a problem-oriented coping strategy, because they are addressing the issue head-on. Given my participants‘ many stories of success, I feel that this strategy is generally a form of adaptive coping. I.e., it appears to work. Educating clients. As I explained earlier, hospice organizations‘ reliance on the medical model may stem, in part, from the fact that the public tends to view medicine as legitimate and other matters such as psychosocial and spiritual as less so. This dominance of the medical model in U.S. culture raises challenges for —non-medical“ hospice workers, because some patients and/or families misunderstand, devalue, and/or reject their services. One strategy my participants use to cope with these challenges is to educate their clients about their discipline. This strategy is very similar to when they educate their coworkers, in that education can take the form of a direct or indirect approach. Sometimes workers will explicitly explain their discipline to the patient and family. For example, music therapists described how they will (in a kind, gentle way) explain to patients and families that they —are credentialed,“ —did an internship,“ and —are here to help the patient with his breathing.“ Other times workers will take the indirect approach of modeling, teaching through example. In this case, modeling means that the worker will do what s/he wants the patient and/or family to do. For example, integrative therapist Mike explained how he will move toward the patient and place his hands on him, and he will motion for the family members to come do the same. Social worker
134 Margie recalled how she would move toward the patient, touch her, and cry softly with her, —because that‘s what I want the family to do.“ I feel that educating patients and families, whether directly or indirectly, is a problem-oriented coping strategy, because once again they are addressing the challenge itself. Since educating clients seems to generally work, I view this strategy as a form of adaptive coping. Using clients‘ lack of knowledge to your advantage. In addition to education, there is another strategy that —non-medical“ workers use to cope with patients and families who misunderstand, devalue, or reject their profession. Sometimes workers will use their clients‘ lack of knowledge to their advantage. That is, some workers play upon patients‘ and families‘ lack of information about or stereotyping of their discipline to gain entrée, to —get my foot in the door.“ For example, music therapists pointed out how many patients and families have never heard of music therapy and therefore will mistake the therapist for an —entertainer who‘s there to play happy songs and cheer them up.“ Although this stereotyping frustrates some music therapists, others have used it to their advantage. That is, these therapists acknowledge that most people view music as —pleasant, fun, and non-threatening.“ So the music therapist will go to the door with her/his guitar in hand and say, —Yes, I‘m here to play some songs for the patient.“ Since the family member answering the door is grateful for this break from all the —medical“ aspects of hospice, s/he lets the music therapist in. This tactic of using clients‘ lack of knowledge to one‘s advantage seems a problem-oriented and adaptive strategy, because it directly addresses the challenge and generally works. I am struck by the irony here, that these workers‘ two most successful (adaptive) coping strategies œ educating clients and using clients‘ lack of information to their advantage œ are on the completely opposite ends of the spectrum. Some workers seek to facilitate their clients‘ understanding, while other workers use their clients‘ lack of understanding. Although totally different, both tactics seem to work. Remembering —It‘s not about me; its about them.“ Finally, some workers deal with the challenges raised by Crossings‘ focus on money matters by resorting to the mantra I came to hear so often throughout this project: —It‘s not about me; it‘s about them.“ This theme of the hospice worker leaving her/his feelings, opinions, judgments
135 out of the situation and instead focusing on the patient and family has arisen time and again. Here it may be an emotion-oriented strategy workers use to (try to) set aside their discontent (with Crossings‘ emphasis on money, too much paperwork, fine line between care versus cure, primacy of medicine, and so on) and instead focus their efforts on the patient and family. One participant said, —Fuck [Crossings]. Yeah, the organization‘s all about the money, but I‘m all about the patient. Let the people upstairs do the counting. I care about my patients, that‘s why I‘m here. It‘s not about me; it‘s about them. Fuck my feelings. It‘s about them, not me.“ Another participant commented, —So what if the family thinks I‘m just a touchy-feely kind of person? That‘s fine. I mean sometimes it‘s frustrating, I want to like lecture them sometimes and say ”I went to school for this, not just anyone can do this.‘ But what‘s the point of that? In the end, it‘s not about me. I‘m there to provide emotional support. And if I can do that then I‘ve done my job. I really need to leave my feelings out of it.“ Reminding themselves —It‘s not about me; it‘s about them“ seems an emotion- oriented strategy, because it is a way for these workers to try to cope with their feelings. This strategy sometimes appears adaptive; some participants seemed to be able to truly put their feelings aside and feel rewarded when they helped a patient and/or family. At times, however, this strategy seems maladaptive; in some situations it seemed that the participant was still upset.
Conclusion In this chapter I have explored how Crossings, like other U.S. hospices, is becoming more like a business. This move toward a more business-like mentality and model is in response to an increasingly competitive, bureaucratized, and corporatized health care industry. Crossings‘ shift to functioning more like a business involves three main tactics: expansion, division of labor, and cost containment. First, Crossings has expanded its client base by enrolling more and more patients. This results in workers experiencing quantitative and qualitative role overload. They experience quantitative
136 role overload because they are forced to visit increasing numbers of patients still within a finite amount of time. They experience qualitative role overload because they are taking care of higher-acuity patients due to Crossings‘ open-access approach. Their tasks are significantly more complicated yet still restricted to a finite amount of time. These workers also perceive their having to adjust to work in different settings as a result of Crossings‘ expansion, although hospices across the U.S. follow this trend as well. My participants work in patients‘ homes, inpatient units, hospitals, nursing homes, and assisted living facilities. These participants try to manage their role overload by sacrificing time with their clients and also abandoning their professional socialization activities. They engage in impression management to negotiate the differences that arise in various work settings. Second, over time Crossings Hospice has implemented a highly complex and specialized division of labor. This organization‘s literature describes each member of the interdisciplinary hospice Team as having a unique and strictly delineated role. This division of labor has led to some participants feeling alienated from the hospice process, because they regret they cannot accompany their patient throughout the entire journey. The division of labor also poses challenges because, in actual hospice practice, roles often overlap among members of the hospice Team. While in some situations workers view this blurring of roles as normal, inevitable, and acceptable, other times workers are frustrated because they feel that another Team member stepped on their toes or placed them in a difficult and/or inappropriate position. Finally, Crossings‘ division of labor can have irrational consequences for patients and families, who are often faced with repetitive questions and assessments. This adds to the stress of hospice workers, who now on top of everything else must deal with the patient‘s/family‘s frustration. These participants try to deal with these challenges by keeping the lines of communication open with their coworkers as well as their clients. And when all else fails, they remind themselves —It‘s not about me; it‘s about them.“ Third, in response to an increasingly competitive health care industry, Crossings has focused more and more on cost containment. Workers resent Crossings‘ attempts to control costs internally, but even more often they face challenges due to government reimbursement rules. Crossings‘ focus on money threatens the delicate rapport that these
137 workers are cultivating with their patients and families. Government reimbursement rules increase the need for documentation, which adds to these workers‘ already high workload. While the government will only pay for comfort care, Crossings œ in efforts to gain more patients and remain competitive œ has shifted to a more open-access orientation. These workers must negotiate the often blurry line between care versus cure. Finally, Crossings and other hospice organizations rely heavily on a medical model, making so-called —non-medical“ hospice workers feel misunderstood, devalued, and even at times rejected by the organization, their coworkers, and their clients. My study‘s participants employ many coping strategies to deal with the challenges raised by Crossings‘ focus on cost containment. Some participants accept their working conditions begrudgingly, while others disassociate themselves and their work from management. Some workers educate their coworkers and clients, while others use misunderstandings about their profession to their advantage. And again, when all else fails, they remind themselves, —It‘s not about me; it‘s about them.“ In sum, Crossings Hospice may be a microcosm of the U.S. hospice movement in general. Because U.S. health care has become more like business, hospice organizations like Crossings find themselves under pressure either to adapt or become obsolete. —If you can‘t beat them, join them.“ Hospice‘s move toward becoming more like a business strikes me as particularly ironic. The hospice movement began as an alternative to a bureaucratized, rationalized, impersonal way of dying. While hospice still prides itself on being an alternative, I wonder if one day it will —adapt“ to the point of losing its original character and intent.
138 CHAPTER 9
DISCUSSION AND CONCLUSIONS
In this dissertation I explore some of the challenges that hospice workers face in their line of work. In Chapter 4 I focus on conflicts that sometimes arise between workers and their clients. Workers often face challenges because the subject of death is so taboo in U.S. culture. This leads to many patients and families being in denial about the impending death as well as attempting to —protect“ one another from this inevitable result. Patients and families also do not understand the processes of dying and grieving, and some continue to push for curative treatments, which is antithetical to traditional hospice philosophy. The participants in my study attempt to cope with these challenges by educating their clients, both directly through explanation as well as indirectly through example. Conflicts also arise between hospice workers and their clients because of the public‘s misperception that hospice is a place one goes in order to die. This misconception causes many patients and families to enroll —too late“ to truly benefit from hospice services, which often reinforces the public‘s misconception that hospice is a place for death. This misconception also raises challenges ironically at the opposite ends of the spectrum. On one hand, many patients and families fear that hospice will —kill“ them through the use of morphine and other pain medications. On the other hand, many patients and families (incorrectly) believe that hospice will honor and fulfill their requests for euthanasia. The participants in my study attempt to cope with these challenges by educating their clients, sometimes fulfilling their clients‘ requests, or by —looking the other way“ when clients‘ actions run counter to hospice philosophy. Finally, conflicts between hospice workers and their clients can stem from cultural and/or religious differences as well as from the unpredictability of a patient‘s mental condition. The participants in my study attempt to cope with these challenges by constantly reminding themselves of the mantra I came to hear so many times throughout my study, —It‘s not about me; it‘s about them.“ That is, participants set aside their own feelings and opinions and serve their clients with as little judgment as possible.
139 In Chapter 5 I focus on the challenges that arise because hospice is becoming more like a business. First, because U.S. health care is an increasingly competitive arena, hospice organizations including Crossings are undergoing processes of expansion. Expansion poses challenges for hospice workers, including quantitative role overload (workers must serve more and more patients within a limited amount of time), qualitative role overload (workers must serve higher acuity patients due to open-access), and work in different settings (patients‘ homes, hospitals, inpatient units, skilled nursing facilities, assisted living facilities). The participants in my study attempt to deal with these challenges of expansion by sacrificing the time they spend with their clients, abandoning their own professional socialization activities, and by engaging in impression management to balance between different settings. Second, over time hospice organizations including Crossings have implemented a specialized division of labor. This leads to some workers feeling alienated from the hospice process, because they no longer accompany their patient throughout the entire —journey.“ Division of labor also leads to challenges within the Interdisciplinary Team, where roles often overlap and the divisions between them become blurred. While sometimes workers view this role ambiguity as natural and acceptable, situations arise where a worker feels her/his toes were —stepped on“ by another worker, or that s/he was placed in a difficult and inappropriate position by another worker. Division of labor also has irrational consequences for patients and families, who become frustrated with the repetition now inherent in hospice work. The participants in my study attempt to cope with the challenges of division of labor by communicating openly with each other and with their clients, as well as by reminding themselves —It‘s not about me; it‘s about them.“ Finally, Crossings and other hospice organizations now focus on cost containment, in large part due to the role of government reimbursement for hospice services. Government rules pose numerous challenges for hospice workers. First, rules threaten the worker-client relationship by thrusting financial matters into the delicate rapport workers are trying to cultivate with patients and families. Second, government reimbursement rules increase the need for documentation, which adds to workers‘ already daunting workload. Third, while the government will pay only for non-curative
140 treatments, hospice organizations like Crossings are shifting to a more open-access approach in order to expand their client base. This can stress workers because in practice the line between care versus cure is often tenuous and blurry. Lastly, government reimbursement rules prioritize —medical“ over —non-medical“ care. This can stress workers especially in psychosocial and spiritual disciplines, because coworkers as well as clients often misunderstand or even devalue their profession. The participants in my study attempt to cope with the challenges of cost containment by accepting their work conditions begrudgingly, decoupling themselves and their work from management, educating coworkers and clients, using clients‘ lack of knowledge to their advantage, and (of course!), reminding themselves —It‘s not about me; it‘s about them.“
My Other Findings This dissertation explores challenges that arise between hospice workers and their clients as well as the consequences of hospice becoming more like a business. However, for my study I also asked participants about why they chose a career in hospice as well as what they value as the rewards of hospice work. In addition, I asked them to talk about how they deal emotionally with working with the dying and grieving. I hope to someday publish from these data as well, but here I briefly highlight some of the major themes that emerged from my interviews. In the beginning of the interview I asked the participant about what led her/him to choose a career in hospice in particular. One surprising theme that emerged was one that I call serendipity. That is, many participants explained that they in no way had planned to work in hospice. In fact, some had had such traumatic personal experiences with death and grief that they purposefully tried to avoid a career in hospice! However, circumstances often —just happened to come up“ that seemed to steer the participant into a hospice career. On the opposite end of the spectrum, many participants spoke passionately about their career in hospice being a —calling.“ That is, they explained that they felt —truly meant to do this line of work,“ —drawn to this work,“ and that —not just anybody can work with the dying.“ Ironically, some of the participants who described hospice work as a calling cited personal experiences with death and grief as an impetus for entering this profession. I say ironically, because it seems to me that personal
141 experiences with death and grief can either dissuade someone from a hospice career (although s/he may end up in it serendipitously anyhow) or actually push her/him into it. Another theme that emerged from my interviews was that some participants chose a career in hospice as a purposeful alternative to other health care professions. Two main reasons surfaced as to why these participants chose to work in hospice instead of in another health care environment. First, hospice philosophy‘s focus on comfort care rather than curative treatment attracted these participants, some of whom had worked in another health care setting previously. They commented that —hospitals just hook patients up to all sorts of things“ and —traditional medical care is too invasive.“ I find these workers‘ preference for care versus cure especially important, because in Chapter 5 I discuss how Crossings and many other hospices are turning to a more —open-access“ orientation in order to expand their client base. That is, Crossings‘ is accepting more and more patients who are on dialysis, chemotherapy, ventilators, blood transfusions, and so on. Some of my study‘s participants purposefully chose hospice in order to get away from traditional health care‘s emphasis on cure. I wonder if in this era of hospice becoming more like a business if this trend toward open-access will continue and, if it does, what will that mean for workers looking for an alternative. That leads me to the second reason why some participants chose to work in hospice instead of another health care profession. Some workers who had worked in other health care settings complained that their previous environment had become —too much like a business“ and —way too corporate.“ Participants explained how they had grown tired, frustrated, and/or angry with their previous setting‘s emphasis on —numbers [patients],“ —endless paperwork,“ —medications-pushing,“ and —growing big, too big for their britches.“ As a result, these participants chose to leave that health care setting in favor of hospice, which traditionally has prided itself on being an alternative to bureaucratized, corporatized health care. Again, here I think of Chapter 5. Since hospice as a movement is becoming more and more like a business, I wonder how this will affect these and other hospice workers‘ perceptions of/opinions about hospice. Some of my study‘s participants already are becoming disenfranchised with their work environment precisely because of this move toward a more business-like model. Will hospice get to
142 the point of being just like those other health care settings? What will that mean for workers‘ job satisfaction as well as future recruitment of hospice workers? For my study I also asked participants about what they see as the rewards of hospice work. I began this project thinking that most workers find helping patients through the dying process to be rewarding, and that definitely emerged as a major theme. However, something that surprised me was how many participants spoke of their enjoyment from working with family members. In fact, some participants said they originally chose a career in hospice precisely to work with the families. One worker said, —Patients have all sorts of people, but caregivers œ families œ have nobody.“ It seems that hospice‘s focus on serving both patients as well as their families is an approach many of these workers like. Even in situations where patients may be incapacitated (due, for example, to dementia, Alzheimer‘s, crisis mode in inpatient unit), many workers gain satisfaction from helping the families through this difficult time. Numerous participants explained that working within the hospice Interdisciplinary Team gives them much satisfaction as well. They explained that the Team is —like a family,“ meaning that they considered members of the Team to be not only their coworkers but also, in many cases, their friends. They also spoke at length of the Team approach‘s benefits for patients and families, who —get different types of needs met,“ —cared by all sorts of people,“ and —benefit from a multidisciplinary approach.“ Participants also seemed to rely on Team members for both logistical as well as emotional support, and some spoke of how they enjoyed the —collegiality on the Team“ as well as —the chance to learn about other disciplines.“ Finally, a theme that surfaced over and over again was how many participants spoke of —flexibility“ as being one of the most cherished rewards of working in hospice. From my interviews I began to understand that flexibility especially refers to freedom in balancing between paid work and personal life. Many studies have explored the so-called work-life balance, especially for women who often are expected to be perfect at both. My study‘s participants explained how they loved their job because it was so flexible and gelled so well with their personal life. They explained that this job allows them to set their own schedule, rearrange patient visits if necessary, take off a day if a Team member can cover for them, and switch Teams within the organization itself. Given that hospice
143 is becoming more like a business, I wonder if this flexibility and autonomy will be threatened in the future by processes of bureaucratization/rationalization. Finally, for my study I also asked participants how they deal emotionally with working in hospice. When I began this project I assumed that hospice work must be emotionally daunting and depressing. After all, workers are interacting with patients who are dying as well as with families who are grieving and will continue to do so after the patient dies. Many participants agreed that hospice work can be emotionally challenging for these reasons. However, my study‘s participants engage in coping strategies to manage their emotions. These strategies include drawing upon personal experiences with death and grief, practicing self-care and self-reflexivity, focusing on the job, relying on the Team for emotional support, establishing and/or negotiating boundaries, and using humor. Some of my study‘s participants draw upon personal experiences with death and grief to get through particularly emotional experiences on the job and empathize with their patients and families. For example, social worker Margie explained how she had cared for her own mother dying of Alzheimer‘s, and shortly thereafter for her husband as well: M: —In hospice work you have to go where the people are, because they‘re not going to come to where you are. And Alzheimer‘s taught me that. My mother taught me that.“ G: —How so?“ M: —That when she had Alzheimer‘s there was nothing written about this disease, and she kind of taught me with what she did and you know I learned the easiest way is just go with her, do what she wanted to do, don‘t argue with her, . . . and observe. Ask. She gave me a lot of insights into that disease . . . . You gotta go, she could never come back to where I was, if I was going to have any quality with her I had to get in there and join her.“ G: —It was on her terms.“ M: —Right, right, it was on her terms. And that was a blessing because my husband was diagnosed at the same time, a couple years later, so I think
144 she knew, and she was training me, this is how you have to take care of him.“ I learned from Margie‘s comments and the rest of our interview that these experiences with her own mother and husband help her at times to empathize with patients and families and cope with the difficult emotions that arise in this line of work. In order to handle hospice work emotionally I also learned about the importance of practicing self-care. Self-care means taking care of oneself, both physically and emotionally. Participants explained how they exercise, get enough sleep, and eat right to stay as in good a physical health as possible, because —physical health helps your emotional health.“ Some participants like integrative therapist Mike also practice what they preach, so to speak, to care for themselves. That is, Mike uses the very techniques he practices with patients and families œ breathing, relaxation, meditation œ to take care of himself. Self-care involves caring for oneself emotionally as well. Participants emphasized the need to enjoy one‘s own life, because hospice work makes one acutely aware that one —can lose what is most precious in an instant“ and that —nothing is guaranteed.“ Participants spoke about the importance of spending time with their partner and children, as well as doing activities to —honor who you are.“ That is, do activities you enjoy and that remind you of who you are and help you maintain your identity. Finally, for some participants self-care involves taking care of one‘s emotional health by relying on support groups within Crossings and/or seeing a counselor in one‘s private life. In addition to self-care, participants often practice self-reflexivity to manage their emotions. They emphasized the need to —know your triggers,“ that is, know what emotionally sets one off. They also spoke of the crucial need to take time to —reflect and process,“ that is, to think and feel about one‘s experiences and grieve for patients in one‘s own time. Bereavement counselor Kyle says: —I think it‘s a clinician‘s responsibility to say well, where was I in that session, and why was I affected so, why did I shut up, or why did get made at them {laughs}, whatever it might be, it‘s not just the crying part, or the tearing part, it‘s about any kind of reaction. Where is that coming from? So I think that we should always be doing that
145 . . . . Just clear out, and that‘s kind of where I would just try to get some kind of meditative or contemplative place at least daily and say ok, what am I really feeling, and let myself feel that so I‘m not carrying today‘s stuff into tomorrow into another session etc. But I think it can be hard to do, you get home late, or there‘s other competing issues, but I think that‘s what should be done. And I do that ideally but I don‘t always do it.“ Kyle‘s comments illustrate his firm belief that taking time to reflect and —clear out“ is crucial for not only his own emotional well-being but also for his ability to move on and help the next grieving family. He points out that while self-reflexivity is important, it is an ideal that sometimes is hard to achieve. Some participants cope with the emotions of hospice work by focusing on their job. That is, they remind themselves that —bad things happen anyway“ and that it is precisely their job to —get in there and help.“ So even though the worker may be sad because the patient is dying and the family is grieving, it helps her/him to know that s/he is helping these patients and families, and it would be —even sadder if no one was there to help.“ In addition to focusing on the goal of their job, I found that some participants focused on the more mundane aspects of their work to get through emotionally difficult times. For example, a few participants use paperwork, computer charting, and driving to different work settings as —down time“ to recoup their emotions and refocus for the next patient and family. Earlier I mentioned that a reward of hospice work for many participants is working within the hospice Interdisciplinary Team. From my interviews I learned that the Team also serves as a source of emotional support as well. Workers spoke of how they would —have lunch before meeting with a difficult family“ and —get ice cream and talk about a patient‘s death.“ The Team also provides logistical support which I learn often translates into emotional support. For example, if a worker is feeling emotionally —wiped out,“ then s/he will switch with another Team member to take a break. This relates to the theme of flexibility that I discussed earlier as well. A major theme that emerged from my interviews is that participants often establish and/or negotiate boundaries to deal with the emotionality of their work. That is, they must strike a balance between being detached (to preserve their own emotional well-
146 being as well as serve their clients) versus showing empathy for their patients and families. Studies like Ward (1998) reveal that boundary maintenance is a key strategy hospice workers use to manage their feelings on the job. At Crossings‘ orientation new workers are taught the importance of maintaining professional boundaries and avoiding transference. Many workers‘ individual professions, such as nursing and social work, also emphasize the importance of boundaries. My study reveals that workers vary widely in their views of boundaries. Some participants explained that it is vital to remain —detached so you can do your job,“ while others said you —absolutely have to get emotional and cry with your patients to show them you truly care.“ Most of my study‘s participants fall somewhere in between, negotiating boundaries depending on the context and circumstances. This reiterates Ward‘s findings of the contingent nature of boundary- making in hospice work (1998). In my study I learned that workers create/negotiate both physical as well as emotional boundaries. By physical boundaries I mean that participants create a physical separation between themselves and their work. They take their hospice materials out of their car for the weekend, turn off their hospice cell phone, and do not check hospice voicemail and/or email. They are careful about the types of television shows and movies they watch, that they are not too sad, depressing, or medical. They also keep their hospice relationships physically separate from their personal life relationships. For example, music therapist Bess explains: —One of the ladies at my church is actually on hospice and on my Team right now, and when I œ she was having a really rough day at church one day and I was able to talk to her, got her a referral for music therapy because she hadn‘t accepted it yet, but I talked to my supervisor and said, ”I cannot take this case, because I‘m too emotionally invested.‘ And she‘s like ”Absolutely you‘re not taking this case.‘ So knowing that‘s a boundary, professionally and personally, you know? And I explained that to this lady was, ”I‘ll be your church friend, I‘m gonna have someone come visit you.‘ I mean, I went on the first visit so she felt comfortable, but I said, ”This is gonna be your music therapist, plus you have all the other Team,‘ but I said, ”I‘m gonna be your church friend.‘ So knowing
147 that boundary, so that I‘m not already emotionally invested before I even walk into the patient‘s door.“ Bess‘s comments illustrate her attempt to create a physical boundary between her professional relationships with patients versus her personal relationships with friends. Because this patient is already a personal friend, Bess (along with her supervisor) chooses to not be this woman‘s music therapist. She creates a physical boundary between her work life and personal life in order to handle her own emotions and subsequently better serve her clients. Workers also create/negotiate emotional boundaries to cope with hospice work. Many participants spoke of how they have to remind themselves —this is not my mother“ or —this is not my son.“ That is, when they feel particularly close/drawn to a patient or family member, they focus on the fact that this is a client with whom they are working. Workers also compartmentalize their emotions, meaning that they set aside their feelings during the situation but then come back to deal with their feelings later when they are out of the situation. Finally, some workers keep their hospice relationships emotionally separate from their personal relationships. Music therapist Gilda says: —I think if you were to ask a lot of my patients they would think that we‘re really close. And they think of me, like they‘ll say all the time, ”Oh, you‘re like my daughter,‘ —You‘re like my friend.‘ You know, it‘s really sweet, but to me it‘s not like that at all. But I want them to feel like I am very close to them and very supportive of them.“ Gilda‘s comments illustrate how she creates an emotional boundary between herself and her clients, but her clients are not aware of this nor does she want them to be. While they consider her a friend, she does not feel the same. She does not feel emotionally toward her clients the way she feels toward her own friends. Finally, I found that many participants seem to use humor to cope with the emotional demands of their work. Studies like Monahan (2003) find that hospice workers often use humor to deal with emotionally difficult situations. Some of my study‘s participants explicitly acknowledged their use of humor. For example, they described how they make jokes and comments to each other at work that probably would be viewed by patients and families as inappropriate. Social worker Dara says:
148 D: —There‘s some black humor, and I mean even in the workroom talking to coworkers and we joke around and oh my god if a family ever heard us they would just, they would be mortified.“ G: —Can you give an example?“ D: —Uuummm, yeah. I think it‘s a coping mechanism where it‘s going to get you through it. But to the outside world, you know œ One time I was on a phone call and my husband listened to what I said and I was talking to a coworker and I hung up and my husband looked at me like ”oh my god‘ {laughing}. And he‘s in a totally different field than I. And he listened to me talking to this coworker and he looked at me like ”who are you?‘ {pauses} Ok, this would be an example. I walked in and my [seven-year-old] son said to me, ”Did anybody die today?‘ And I said, ”No, but the day‘s not over yet.‘“ Dara acknowledges that humor seems to be a —coping mechanism“ that allows her and other workers to deal with the emotionality of working with the dying and grieving. Although some workers like Dara are conscious of their use of humor as a coping strategy, I was struck throughout my project by how many workers seem to me to use humor without being aware of this. Most participants did not bring up humor specifically. However, I noticed while interviewing that many workers would laugh and joke a lot with me. Sometimes they would laugh while telling a story that I personally found very sad and/or disturbing, and sometimes they would phrase things in a manner that I did not find funny or even appropriate: —Yeah, she kicked the bucket that night, and boy she kicked it hard {laughing}.“ I found myself at first feeling a bit put off and uncomfortable when this would happen. Then I had to stop and reassess my feelings as well as my role of researcher. Was I being unfairly judgmental? I decided to make a more conscious effort to step back and try to better understand my feelings and what was happening. As I continued my study I began to think that maybe even during the course of the interview, when I am asking participants to discuss their challenges, their emotions, and they are bringing up such sad and difficult situations, perhaps their humor during the interview is a coping strategy even then, during the actual interview. Maybe humor is in fact a way they deal with the emotionality of their work, even when simply
149 talking about their work. I wonder if perhaps it is also an issue of self-selection. That is, perhaps emotionally challenging jobs such as hospice attracts and keeps workers who find/use humor, because they are precisely the workers who can emotionally handle this type of work. To summarize, in my dissertation I focus on difficulties that arise between workers and their clients as well as on challenges posed by hospice becoming more like a business. However, my study also explores why workers choose a career in hospice, what they find rewarding about their work, and how they cope emotionally with their job. For purposes of time and space I did not address these other issues in my actual dissertation, but I wanted to highlight them here because I think important and interesting themes emerged that warrant future study and discussion.
Research Limitations My study is an attempt to explore the rewards and challenges of hospice work. I must acknowledge, of course, that my study has its limitations. One limitation is small sample size, which calls into question the level of generalizability. My study is based on interviews with 31 workers from a single hospice organization located in the southeastern region of the U.S. Because of my sample‘s limited size and scope, I cannot confidently claim that my results are representative of the experiences of all or even most hospice workers. Crossings Hospice is not-for-profit, but what about for-profit hospices? Crossings is one of the largest hospice organizations in the country, but what about smaller hospices? Are hospices in the southeast somehow and importantly different from hospices in other regions of the U.S.? My sample also suffers from a lack of representativeness even within Crossings itself. I sought to interview workers from a variety of disciplines. What about the workers who did not volunteer to participate in my study? Are their experiences somehow different from those of my participants? For my study I ended up interviewing only one chaplain and one certified nursing assistant. I found that it was especially difficult to recruit CNAs for participation in my study, and I can only hypothesize as to why. Perhaps it is in part due to the fact they are —extremely busy and overloaded,“ as my one participant told me. It seems to me that in these conditions CNAs‘ personal time
150 is especially precious, even a luxury. I also cannot help but worry if some CNAs view me as privileged and even elitist. I remember one meeting I attended in hopes of recruiting more workers to interview. This meeting was comprised primarily of nurses and social workers, who were all White middle class women. The three CNAs attending were all minority women who stayed relatively silent during the meeting. CNAs generally come from disproportionately lower educational backgrounds than the workers from other disciplines, and they are often underpaid. Many CNAs also tend to be racial- ethnic minorities and immigrants whose first language may not be English (Diamond 1992; Foner 1994). I wonder if me being a white, middle class, native-born, college- educated woman seeking to obtain her PhD comes across to some CNAs as off-putting, too —academic,“ privileged, and/or elitist. This thought bothered me immensely during that meeting and throughout my study, but to this day I remain unsure of how to deal with this possibility. I also must acknowledge my status as an outsider/researcher. For my study I chose to conduct in-depth, face-to-face interviews with hospice workers. Because my data are based on these interviews, all I can go by is what these participants say, how they themselves perceive challenges, and how they themselves describe how they attempt to cope with these challenges. The limitation here is that I did not directly observe workers doing actual hospice work. I never observed, for example, hospice workers interacting with patients and their families. I never saw firsthand difficult situations arise and how workers try to cope with these challenges. Because I did not do participant observation, I must acknowledge that perhaps I am missing some important things that maybe these workers are not aware of or do not see for themselves because they are so embedded in the situation. Future research can address this limitation by incorporating observation into its methodology. For example, the researcher can become a hospice volunteer, go through volunteer orientation and training, and actually work with patients and families to gain a more inside understanding of the complexities of hospice work.
Contributions and Suggestions for Future Research Although my study clearly has its limitations, I still feel that it is an important step in exploring the rewards and challenges of hospice work. First, as to my small sample
151 size, I would like to reiterate that this is an exploratory study. Following the grounded theory approach, I did not enter into this study with specific hypotheses, i.e., preconceived notions I wanted to test and verify. Rather, with this study I am trying to contribute to sociological inquiry as well as hospice practice by helping to fill in gaps in the current literature. As I explained in Chapter 2, studies express the need for research on coping strategies of workers facing conflict as well as research on ethical dilemmas in hospice work in particular. My study is a start. Qualitative studies do not claim large sample sizes nor generalizability the way quantitative studies do; they serve to explore and provide richer, deeper data. Furthermore, Glaser and Strauss (1967) attest to the rigor of the grounded theory method by pointing to the research process itself of coding, memoing, theoretical sampling: —… [C]onstant comparisons between and among data or groups of data strengthen the level of accuracy and diversity, and theoretical sampling provides a basis for the generalization of theory to contexts that share key features with the context from which the theory was developed“ (Jeon 2004: 254). Another limitation I discussed is that perhaps I am not seeing important things that I could only see through the eyes of a direct observer. For my study I rely on in- depth interviews with hospice workers. However, I feel that a strong point of my methodology is that by interviewing I am listening to these workers tell their own stories in their own words. I am, in essence, trying to give them a —voice“ and not impose/rely solely upon my own interpretations and judgments. While much can be said about an inside point of view, I would suggest that much can be said about a more outside, detached point of view as well. Because I did not volunteer, I was not biased by my own experiences of working with patients and families. For my data I had to really listen carefully to my participants and try to understand from their point of view their experience of hospice work. I hope my study has given them the voice they so truly deserve. I feel my study contributes to sociology‘s exploration of stress in paid work. In Chapter 2 I explained how studies have examined stressors including quantitative role overload (Bacharach et al. 1990; Kahn 1974; Rizzo et al. 1970), qualitative role overload (Gomme and Hall 1995), role ambiguity and overlap (Antonioni 1996; Beauchamp et al. 2002; Olk and Friedlander 1992; Tubre and Collins 2000), as well as role conflict
152 (Almost 2006; Bacharach et al. 1990; Blake and Mouton 1964; Cushnie 1988; Dirks and Parks 2003; El Sawad et al. 2004; Fisher and Gitelson 1983; Forte 1997; Goffman 1961 and 1959; Kahn et al. 1964; Katz and Kahn 1978; Kemery et al. 1987; McElhaney 1996; Merton 1968; Parsons 1951; Rosen 1970; Siegall and Cummings 1995; Soderfeldt et al. 1996; Stryker and Macke 1978; Valentine 2001). These studies call for more research into these stressors in various work settings. My study of these stressors in hospice, a work environment that is greatly expanding and becoming more relevant as our population ages, contributes to that line of research. In fact, my study is yet another that finds these stressors are not unique to one particular work environment but apparently span across a multitude of settings, including paid care work. Previous studies on work stress also call for more research into the types of coping strategies workers use to manage challenges that arise on the job, because coping strategies can mediate the effects of work stress (Djikstra, et al. 2005; Siegall and Cummings 1995; Stryker and Macke 1978; Tracy 2004; Valentine et al. 1998). My study addresses this as well, by highlighting some of the techniques these hospice workers use to deal with the difficulties of their job. In my study I have tried to address how these techniques can mediate the effects of work stress by discussing if these strategies seem to me problem- oriented or emotion-oriented, adaptive or maladaptive. Future research should explore these issues further. My study also contributes to the literature that finds hospice work in particular to be dilemmatic in nature. As I explained in Chapter 2, hospice work can be rife with stress (Vachon 1978, 1979, 1987,1995). First, hospice work is emotionally daunting because workers are interacting with the dying and grieving (Gray-Toft and Anderson 1986; Mesler 1995; Ward and Gordon 2006). My study finds this as well but also explores some of the ways these workers try to manage their emotions. Future studies should continue to focus on how hospice and other paid care workers manage their emotions on the job. These studies could build upon the literature that has explored interactive service workers‘ attempts at emotion management (Hochschild 1983; Leidner 1993; Parham 2002). Second, hospice workers must balance serving clients in a variety of settings. My study reiterates Mesler‘s (1995) finding that patients‘ homes can be unpredictable. My
153 study also highlights the challenges of working with other staff, especially those of skilled nursing facilities (Gray-Toft and Anderson 1986-87; Hospice Management Advisor 2002 and 2004; Munley et al. 1982; Parham 2002). Because hospice continues to expand into different work environments, future studies should continue to explore how these workers negotiate each setting‘s unique challenges. Third, hospice workers are part of an Interdisciplinary Team, which poses numerous challenges (Connor et al. 2002; Garman et al. 2006; Hall 2005; McCallin 2001; Oliver and Peck 2006; Payne 2004; Reese and Sontag 2001). My study highlights conflicts that arise from role ambiguity and overlap among Team members (Kulys and Davis 1987; MacDonald 1991; Reese and Sontag 2001; Rahman 2000), including how some workers‘ professions are devalued by Team members (Reese and Sontag 2001). Future studies could build upon sociological discussions of legitimacy, jurisdictional challenges, and turf wars between competing professions (Abbott 1988; Powell and DiMaggio 1991; Starr 1982). Furthermore, I found myself struck by the disconnect between hospice rhetoric versus practice regarding Team dynamics. For example, many participants toted the Team approach as —progressive,“ —democratic,“ and —non- hierarchical.“ That is, they seemed to me proud of how every member of the hospice Team is valued equally, —from the doctor all the way down to the CNA.“ I feel that it is especially important for future studies to explore this rhetoric of equality and whether or not it carries over into actual hospice practice. It seems to me that many of my study‘s participants genuinely believe (and are proud of) that all members of the hospice Team hold equal value. However, I suspect that in actual practice the reality is sometimes different from the words. I explained how in reality many so-called —non-medical“ participants felt devalued by their —medical“ coworkers. In addition, some participants suggested that CNAs are sometimes devalued and —taken for granted.“ Even the participant who said —from the doctor all the way down to the CNA“ seems to verbally fall into this different valuing of professions; I cannot help but notice her/his words‘ ordering and the use of the word —down.“ Given my experience sitting in on the meeting where the three CNAs were silent, I wonder if this is a common occurrence and, if so, what can be done about it.
154 In addition, a surprising theme emerged from my participants‘ discussion of Team dynamics. I entered this project thinking that most Team conflict would originate from the fact that workers from different professions are trying to collaborate. However, what came up even more often was participants‘ belief that conflicts between Team members stem not from professional differences but rather from differences in —lifestyle,“ —culture,“ —personality,“ and —religion.“ For example, two participants explained how on one Team one worker was from Jamaica and adamantly opposed to homosexuality, whereas another member of that Team was openly gay. Other participants gave examples of —personality“ conflicts, such as when one Team member —thinks of herself as the mother hen and is really domineering.“ Finally, differences in religious beliefs also seem to give rise to conflict. A few participants commented how they felt highly uncomfortable at their IDG, which sometimes will begin with a prayer or moment of silence. One participant even told me of a few cases where workers had quit Crossings because they felt so unaccepted due to their religious beliefs or lack thereof. Ironically, as I complete this dissertation, a newspaper just this week ran an article about an employee who quit from a hospice organization, because the organization decided to discourage workers from using the term —God“ or other specific religious references during Team meetings (although religious discussions with patients and families are still accepted and even encouraged if relevant). In sum, while conflicts of course may arise from the collaboration of differently trained professionals, it seems to me that challenges arise simply because, as one participant phrased it, —People are people. The Team is like a family, meaning it‘s great but also brings with it all the crap you‘d expect.“ Future studies should explore these complexities in hospice Team dynamics further. Fourth, hospice workers serve both patients and their families, and my study confirms other studies‘ findings that families are often filled with conflict (King and Quill 2006) and denial of the impending death (Csikai 2004). Because hospice continues to consider both patient and family as the unit of care, future studies should explore further conflicts that may arise between a patient and his/her family as well as between family members. Fifth, I feel my exploration of the challenges of hospice work is especially relevant amidst the U.S.‘s changing health care industry. Human service organizations
155 that perform care work are on the rise, in large part due to our aging population. Hospices (among other HSOs of course) will become more numerous and salient as people live longer and longer. Furthermore, U.S. health care has been and continues to undergo a shift from providing a service to making a profit. Government also plays a larger role by reimbursing for services. In this increasingly competitive health care industry, health care organizations including hospices find themselves becoming more rationalized and bureaucratized, which my study and others (Dahlin 1999; DiTullio and MacDonald 1999; Mesler 1995; Mesler and Miller 1996; Miller and Mike 1995; Monahan 2003; Ward and Gordon 2006) reveal has consequences for the workers in these organizations. Future studies should explore this in more detail, especially given my study‘s finding that some of these workers chose a career in hospice precisely to avoid or get out of the increasing corporatization of other health care organizations. Finally, this changing health care context has contributed to the rise of the issue of euthanasia, making my study of hospice workers especially relevant. Because of the shifting context of health care in the U.S., there have been significant changes in how medical practitioners and patients view their own and each other‘s status. These changes in the doctor-patient relationship have paved the way for the question of who should control make decisions regarding end-of-life. The relationship between a physician and her/his patient has undergone a dramatic shift since the rise of managed care organizations. Today individuals take a more active role in their health care because many have lost confidence in their doctors and in the medical profession because of its emphasis on money. While in the past the doctor-patient relationship was based on trust, presently more people consider the relationship a contractual agreement (Field and Cassel 1997; Gordon and Singer 1995; May et al. 1996). The context of consumerism in the U.S. health care system has proven a catalyst for changing doctor-patient relationships. According to May et al. (1996), —The consumerisation of relationships between patients and those who care for them . . . has involved drawing patients into collaborative relationships in which they share some responsibility for decision making“ (194-195). This shift from patients in a paternalistic, activity-passivity relationship to consumers in a legalistic, mutual participation relationship can be seen, for example, in the recent development and increasing popularity of the advanced directive, a document that
156 explicitly states an individual‘s health care preferences or designates a person who will make health care decisions in the event that the patient is rendered incompetent (Whetstine 2007). The U.S.‘s shift in health care from service to profit has contributed to the rise of the issue of euthanasia, and future studies need to address this development. As I explained in Chapters 2 and 4, studies show that requests for euthanasia are common in hospice work despite hospice‘s prohibitions against it. Euthanasia poses serious challenges for hospice workers, because this issue elucidates potential contradictions within the hospice philosophy (Campbell et al. 1995; McMahon 2003; Mesler and Miller 2000; Miller et al. 2002; Schwarz 2003; Ward 1998). My study confirms that hospice workers do indeed receive requests for euthanasia from both patients and families. There seems to be a gradual move toward legalization of physician assisted suicide in the U.S. (Oregon in 1997, Washington in 2008, Montana in 2008 but currently in a court battle over the issue). Future studies should explore euthanasia further, because the issue clearly is not going to go away anytime soon, especially for hospice workers who serve terminally ill patients. In terms of practical contributions, I hope that my study can help get the word out, so to speak, to the public about the many benefits of hospice. I hope that this project will help cut through the taboo nature of the subject of death, and that the information I learned from my participants helps dispel the public‘s misconception that hospice is where one goes to die. I also feel that if we know more about the challenges of hospice work, perhaps workers can be better prepared to deal with those challenges and hence provide better care for their patients and families. I explained earlier the reasons why I cannot confidently claim that my study‘s findings are generalizable to all hospice workers. However, given that my results echo those of some other hospice studies, I feel that my study taps into some real challenges these workers face frequently on the job. Perhaps my study can offer some comfort to these workers, who should realize that their challenges are not theirs alone but rather are in large part a product of U.S. culture in general and U.S. changes in health care in particular. Perhaps hospice workers can learn from one another‘s attempts to cope with the challenges that arise.
157 APPENDIX A HUMAN SUBJECTS APPROVAL
Office of the Vice President For Research Human Subjects Committee Tallahassee, Florida 32306-2742 (850) 644-8673 ‡ FAX (850) 644-4392
APPROVAL MEMORANDUM
Date: 4/14/2008
To: Gina Carreno
Address: 2 Eaton Place Boynton Beach, FL 33426 Dept.: SOCIOLOGY
From: Thomas L. Jacobson, Chair
Re: Use of Human Subjects in Research The Rewards and Challenges of Hospice Work
The application that you submitted to this office in regard to the use of human subjects in the proposal referenced above have been reviewed by the Secretary, the Chair, and two members of the Human Subjects Committee. Your project is determined to be Expedited per 45 CFR § 46.110(7) and has been approved by an expedited review process.
The Human Subjects Committee has not evaluated your proposal for scientific merit, except to weigh the risk to the human participants and the aspects of the proposal related to potential risk and benefit. This approval does not replace any departmental or other approvals, which may be required.
If you submitted a proposed consent form with your application, the approved stamped consent form is attached to this approval notice. Only the stamped version of the consent form may be used in recruiting research subjects.
If the project has not been completed by 4/3/2009 you must request a renewal of approval for continuation of the project. As a courtesy, a renewal notice will be sent to you prior to your expiration date; however, it is your responsibility as the Principal Investigator to timely request renewal of your approval from the Committee.
You are advised that any change in protocol for this project must be reviewed and approved by the Committee prior to implementation of the proposed change in the protocol. A protocol change/amendment form is required to be submitted for approval by the Committee. In addition, federal regulations require that the Principal Investigator
158 promptly report, in writing any unanticipated problems or adverse events involving risks to research subjects or others.
By copy of this memorandum, the Chair of your department and/or your major professor is reminded that he/she is responsible for being informed concerning research projects involving human subjects in the department, and should review protocols as often as needed to insure that the project is being conducted in compliance with our institution and with DHHS regulations.
This institution has an Assurance on file with the Office for Human Research Protection. The Assurance Number is IRB00000446.
Cc: Jill Quadagno, Advisor HSC No. 2008.1018
159 APPENDIX B INFORMED CONSENT FORM
FSU Behavioral Consent Form The Rewards and Challenges of Hospice Work
You are invited to be in a research study of how hospice workers experience their work. I am exploring how hospice workers find meaning and satisfaction in their work as well as how they cope with challenges of their job. I ask that you read this form and ask any questions you may have before agreeing to be in this study.
This study is being conducted by Gina Carreno, doctoral student in the Department of Sociology at Florida State University.
Background Information: The purpose of this study is to explore how hospice workers (physicians, nurses, social workers, certified nurses‘ assistants, chaplains/spiritual care counselors, bereavement counselors, therapists, and other hospice workers) experience their work. In other words, how do they find meaning in their work? What aspects of their job do they find rewarding? What aspects of their job do they find difficult, and how do they cope with these challenges?
Procedures: I (researcher Gina Carreno) would like to interview you, focusing especially on why you chose a career in hospice, what you enjoy about your job, and also what you find challenging about your job. I would like to interview you in person, face-to-face, at a time and location of your choosing.
Risks and Benefits of Being in the Study:
While I do not forsee any risks of participating in this study, you should keep in mind that I will be interviewing you about rewards and also challenges of your work. While many workers enjoy talking about positive aspects of their job, some workers may feel a bit uncomfortable talking about the difficulties of their job. For example, you may feel sad when I ask about how you handle the emotional strain of working with dying patients and their grieving families.
There are many possible benefits to participation in this study. This study may contribute to a better understanding of hospice work, especially its rewards and its challenges. If indeed hospice workers find some aspects of their job challenging, knowing this may help them and other hospice workers better identify and cope with these challenges. This may not only help individual hospice workers gain more personal satisfaction from their work, but their ability to handle challenges may further improve the care they give their patients and patients‘ families. Furthermore, increasing the general public‘s
160 understanding of hospice work may encourage more people to consider hospice when approaching end-of-life.
Compensation: You will not be paid for your participation.
Confidentiality: The records of this study will be kept private and confidential to the extent permitted by law. I will assign codes such as: —certified nurse‘s assistant 3,“ —social worker 2,“ —nurse 1“ to the real names of participants. My master list with the real names of the participants will be destroyed after the codes are assigned. In any sort of report I might publish, I will not include any information that will make it possible to identify a participant. Research records will be stored securely, and only I will have access to the records. If you agree to be audiotaped during an interview, I will keep my digital recorder in a locked filing cabinet in my locked office, and only I will have access to it. I will destroy these interview files upon this study‘s completion.
Voluntary Nature of the Study: Participation in this study is voluntary. Your decision whether or not to participate will not affect your current or future relations with the University. If you decide to participate, you are free to not answer any question, and you may withdraw at any time without affecting those relationships.
Contacts and Questions: The researcher conducting this study is myself, Gina Carreno. You may ask any questions you have now. If you have a question later, you are encouraged to contact me by phone: (561) 676-9413 and by email: [email protected]. You also may contact my faculty advisor Dr. Jill Quadagno, Department of Sociology at Florida State University, 526 Bellamy Building, Tallahassee, FL 32306-2270; by phone: (850) 644-8827 and by email: [email protected].
If you have any questions or concerns regarding this study and would like to talk to someone other than the researcher, you are encouraged to contact the FSU IRB at 2010 Levy Street, Research Building B, Suite 276, Tallahassee, FL 32306-2742, or by phone (850) 644-8633, or by email at [email protected].
You will be given (offered) a copy of this information to keep for your records.
Statement of Consent: I have read the above information. I have asked questions and have received answers. I consent to participate in the study.
______Signature Date
161 APPENDIX C RECRUITMENT FLYER
Attention Hospice Workers!
If you are a hospice physician, nurse, social worker, certified nursing assistant, chaplain / spiritual care counselor, bereavement counselor, therapist, or other hospice worker, I am asking for your help! Will you participate in my research study? My study‘s title is
The Rewards and Challenges of Hospice Work
This study is the last requirement for my PhD in Sociology from Florida State University. For my study I am hoping to gain a deeper, more insightful understanding of hospice work. I would like to interview you about why you chose a career in hospice, what you enjoy about your job, and also what you find challenging about your job.
If you have any questions and/or are interested in participating, please contact me, Gina Carreno at (561) 676-9413 or by email: [email protected]. Thank you so much for your help with my research project!
162 APPENDIX D RECRUITMENT LETTER
Hello, my name is Gina Carreno, and I am a graduate student in Florida State University‘s Department of Sociology. I am inviting you to be in my research study about how hospice workers (physicians, nurses, social workers, certified nurses‘ assistants, chaplains/spiritual care counselors, bereavement counselors, therapists, and other hospice workers) experience their work. How do hospice workers find meaning in their work? What aspects of their job do they find rewarding? What aspects of their job do they find difficult, and how do they cope with these challenges?
My dissertation is titled —The Rewards and Challenges of Hospice Work.“ I (Gina Carreno) would like to interview you about why you chose a career in hospice, what you enjoy about your job, and also what you find challenging about your job.
I feel that my study may benefit you and your patients. If you do find some aspects of your job challenging, talking about that may help you better identify and cope with these challenges. I hope my research will help hospice workers deal with the more difficult aspects of their job, and that may lead to even better care for patients and their families. Furthermore, increasing the general public‘s understanding of hospice work may encourage more people to consider hospice when approaching end-of-life.
If you choose to participate in this study, please know that your identity and what you say will be kept strictly confidential. In my dissertation I will not include any information that will make it possible to identify you. Research records will be stored securely, and only I will have access to the records. If you agree to be audiotaped during an interview, I will keep my digital recorder in a locked filing cabinet in my locked office, and only I will have access to it. I will destroy these interview files upon this study‘s completion in August 2008.
If you have any questions and/or are interested in participating in my study, please contact me, Gina Carreno at (561) 676-9413 or by email: [email protected]. Thank you so much for your help with this research project!
Sincerely,
Gina Carreno, M.S. (561) 676-9413 [email protected]
163 APPENDIX E INTERVIEW QUESTIONS
I will note the hospice worker‘s name, sex, race-ethnicity, age, years working in hospice in general, years working in this hospice in particular, and their occupation (for example, hospice nurse, or hospice social worker).
1) I‘d like to know a little about your educational background. Were you / how were you trained to work in hospice in particular?
2) Why did you choose a career in hospice? Since you are a (insert occupation: nurse, social worker, etc.), you could have chosen to work in another setting, like a hospital. What made you pick hospice?
3) What do you enjoy about your job? In other words, what aspects of your work give you personal satisfaction?
Now I‘d like to talk about some of the possible challenges of being a hospice worker. In the following questions I‘ll ask about things on the job maybe you find difficult.
4) How do you deal emotionally with this type of job? Is it hard to work around such sad things like patients who are dying and their families who are grieving? (Here I will probe, based on how they answer). Do you have to balance between being close and emotionally involved with patients but also having enough emotional distance so you can keep doing this job? How do you achieve that balance?
5) What‘s it like working within the IDT (interdisciplinary team)? (Probe). What do you like about working in the IDT? How do you think having an interdisciplinary team benefits patients and their families?
6) Still talking about the IDT, is there anything you find hard about working in the team? (Probe). For example, I‘ve read that some hospice workers find it challenging to work on a Team because different workers come from different professions œ like in your IDT, you have a nurse, a social worker, a spiritual counselor, and so on. How do you decide who does what? In other words, how do you know what each Team member is supposed to do? Is there any overlap? In other words, do nurses and social workers do some of the same things? (Probe). Do you find that different professionals on the team have different perspectives or priorities? Do you feel that your work as a (insert occupation) is valued by the IDT? (Probe). Do members of the IDT ever disagree? If so, what happens, how do you handle that?
7) Hospice workers work in different places œ at the inpatient unit, in patients‘ homes, in nursing homes, assisted living facilities, hospitals. Is it hard to juggle working in these different settings? (Probe). For example, can you talk about what‘s different about working at a nursing home versus being in a patient‘s home?
164 8) I‘ve read that some hospice workers feel that they are being asked to care for more and more patients, and they feel torn because they need to see all these patients but then that takes away from the time œ and the quality of time œ they can spend with them. Have you experienced this? (Probe). Why do you think you‘re expected to see more and more patients? How do you handle this increase in your workload?
9) In hospice your job is to serve the patient and also his/her family. Have you ever had a situation where the patient and his/her family disagreed about something important? How did you handle that?
10) One of the main points in the hospice philosophy is that hospice is all about patient autonomy, in other words, letting the patient control the circumstances of her/his dying and death. However, what happens when you and a patient disagree about something important? Have you ever had that happen, where you and the patient weren‘t on the same page? (Probe).
11) If you could change anything about your job, what would you change and why?
12) Is there anything I haven‘t asked about that you think is important?
165 BIBLIOGRAPHY
Abel, Emily. 1986. —The Hospice Movement: Institutionalizing Innovation.“ International Journal of Health Services. 16: 71-85.
Abbott, Andrew. 1988. The System of Professions. Chicago: University of Chicago Press.
Abendroth, Dale Ann. 2005. How Expert Hospice Nurses Find Meaning in Their Work. Unpublished PhD dissertation.
Acker, Gila M. 2004. —The Effect of Organizational Conditions (Role Conflict, Role Ambiguity, Opportunities for Professional Development, and Social Support) on Job Satisfaction and Intention to Leave Among Social Workers in Mental Health Care.“ Community Mental Health Journal. 40(1): 65-73.
Adelman, Ronald D., Michelle G. Greene, Rita Charon, and Erika Friedmann. 1992. —The Content of Physician and Elderly Patient Interaction in the Medical Primary Care Encounter.“ Communication Research. 19(3): 370-380.
Almost, Joan. 2006. —Conflict within Nursing Work Environments: Concept Analysis.“ Journal of Advanced Nursing. 53(4): 444-453.
Antonioni, David. 1996. —Two Strategies for Responding to Stressors: Managing Conflict And Clarifying Work Expectations.“ Journal of Business and Psychology. 11(2): 287-295.
Bacharach, Samuel B., Peter Bamberger, and Sharon C. Conley. 1990. —Work Processes, Role Conflict, and Role Overload.“ Work and Occupations. 17(2): 199-228.
Berger-Gross, Victoria and Allen I. Kraut. 1984. —Great Expectations: A No-Conflict Explanation of Role Conflict.“ Journal of Applied Psychology. 69(2): 261-271.
Beauchamp, Mark R., Steven R. Bray, Mark A. Eys, and Albert V. Carron. 2002. —Role Ambiguity, Role Efficacy, and Role Performance: Multidimensional and Mediational Relationships Within Interdependent Sport Teams.“ Group Dynamics: Theory, Research, and Practice. 6(3): 229-242.
Bercovitch, Michaela and Abraham Adunsky. 2004. —Patterns of High-Dose Morphine Use in a Home-Care Hospice Service œ Should We Be Afraid of It?“ Cancer. 101(6): 1473-1477.
Beresford, Larry. 1997. —The Future of Hospice in a Reformed American Health Care System: What are the Real Questions?“ Hospice Journal. 12(2): 85-91.
Beresford, Larry. 1993. The Hospice Handbook. Boston, MA: Little, Brown, and Company.
166 Blake, Robert and Jane Mouton. 1964. The Managerial Grid. Houston, TX: Gulf Publishing Company.
Bower, Peter, Sophie Jerrim, and Linda Gask. 2004. —Primary Care Mental Health Workers: Role Expectations, Conflict, and Ambiguity.“ Health and Social Care in the Community. 12(4): 336-345.
Bradshaw, Ann. 1996. —The Spiritual Dimension of Hospice: The Secularization of an Ideal.“ Social Science and Medicine. 43(3): 409-419.
Burawoy, Michael. 1979. Manufacturing Consent: Changes in the Labor Process under Monopoly Capitalism. New York: Monthly Review Press.
Campbell, Courtney S., Jan Hare, and Pam Matthews. 1995. —Conflicts of Conscience: Hospice and Assisted Suicide.“ Hastings Center Report. 25: 36-43.
Casarett David J. and Timothy E. Quill. 2007. —I‘m Not Ready for Hospice: Strategies for Timely and Effective Hospice Discussions.“ Annals of Internal Medicine. 146(6): 443-449.
Charmaz, Kathy. 2006. Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. London: Sage Publications.
Christakis, Nicholas and Theodore Iwashyna. 2000. —Impact of Individual and Market Factors on the Timing of Initiation of Hospice Terminal Care.“ Medical Care. 38(5): 528-541.
Clover, Alexandra, Jan Browne, Peter McErlain, and Bernadette Vandenberg. 2004. —Patient Approaches to Clinical Conversations in the Palliative Care Setting.“ Journal of Advanced Nursing. 48(4): 333-341.
Committee on Physician-Assisted Death of the American Association of Suicidology. 1996. —Report of the Committee on Physician-Assisted Suicide and Euthanasia.“ Suicide and Life-Threatening Behavior. 26(supplement).
2002. —Conflict between Hospice, Nursing Homes Can Impede End-of-Life Care; Each Side Must Understand the Other and Be Willing to Cooperate.“ Hospice Management Advisor. 7(9): 97-100.
Connor, Stephen R. 2007. —Development of Hospice and Palliative Care in the U.S.“ Omega. 56(1): 89-99.
Connor, Stephen R. Kathleen A. Egan, Donna M. Kwilosz, Dale G. Larson, and Dona J. Reese. 2002. —Interdisciplinary Approaches to Assisting with End-of-Life Care and Decision Making.“ American Behavioral Scientist. 46(3): 340-356.
167 Coor, Charles, Clyde Nabe, and Donna Corr. 2000. Death and Dying: Life and Living. Belmont, CA: Wadsworth.
Csikai, Ellen L. 2004. —Social Workers‘ Participation in the Resolution of Ethical Dilemmas in Hospice Care.“ Health and Social Work. 29(1): 67-77.
Csikai, Ellen L. and Kelli Bass. 2000. —Health Care Social Workers‘ Views of Ethical Issues, Practice, and Policy in End-of-Life Care.“ Social Work in Health Care. 32(2): 1-22.
Csikai, Ellen L. and Mary Raymer. 2005. —Social Workers‘ Educational Needs in End-of- Life Care.“ Social Work in Health Care. 41(1): 53-72.
Csikai, Ellen L., Sheila Roth, and Crystal Moore. 2004. —Ethical Problems in End-of- Life Decision Making Faced by Oncology Social Workers and the Need for Practice Guidelines.“ Journal of Psychosocial Oncology. 22(1): 1-18.
Cushnie, R. 1988. —Conflict: Developing Resolution Skills.“ Journal of the Association of Operating Room Nurses. 47: 733-742.
Dahlin, Constance M. 1999. —Access to Care.“ The Hospice Journal. 14(3-4): 75-84.
Dearing, Karen. 2004. —Getting It, Together: How the Nurse Patient Relationship Influences Treatment Compliance for Patients with Schizophrenia.“ Archives of Psychiatric Nursing. 18(5): 155-163.
Diamond, Timothy. 1992. Making Gray Gold. Chicago: University of Chicago Press.
Dijkstra, Maria T.M., Dirk van Dierendonck, and Arne Evers. 2005. —Responding to Conflict at Work and Individual Well-Being: The Mediating Role of Flight Behaviour and Feelings of Helplessness.“ European Journal of Work and Organizational Psychology. 14(2): 119-135.
Dirks, K.T. and J.M. Parks. 2003. —Conflicting Stories: The State of the Science of Conflict“ in Organizational Behavior: The State of the Science edited by J. Greenberg. Hillsdale, N.J.: Lawrence Erlbaum Associates.
DiTullio, Maria and Douglas MacDonald. 1999. —The Struggle for the Soul of Hospice: Stress, Coping, and Change among Hospice Workers.“ American Journal of Hospice and Palliative Care. 16(5): 641-655.
Duchscher, Judy E. Boychuk and Debra Morgan. 2004. —Grounded Theory: Reflections on the Emerging vs. Forcing Debate.“ Journal of Advanced Nursing. 48(6): 605- 612.
El-Sawad, Amal, John Arnold, and Laurie Cohen. 2004. —‘Doublethink‘: The Prevalence
168 and Function of Contradiction in Accounts of Organizational Life.“ Human Relations. 57(9): 1179-1203.
Erlen, Judith A. 2005. —When Patients and Families Disagree“ Orthopaedic Nursing. 24(4): 279-282.
Field, Marilyn and Christine Cassel. 1997. Approaching Death: Improving Care at the End of Life. Washington, D.C.: National Academy Press.
Fisher, Colleen. 2003. —The Invisible Dimension: Abuse in Palliative Care Families.“ Journal of Palliative Medicine. 6(2): 257-264.
Fisher, Cynthia and Richard Gitelson. 1983. —A Meta-analysis of the Correlates of Role Conflict and Ambiguity.“ Journal of Applied Psychology. 68(2): 320-333.
Foner, Nancy. 1994. The Caregiving Dilemma: Work in an American Nursing Home. Los Angeles: University of California Press.
Forte, Paula. 1997. —The High Cost of Conflict.“ Nursing Economics. 15(3): 119-123.
Francis, Linda E. 2000. —Conflicting Bureaucracies, Conflicted Work: Dilemmas in Case Management for Homeless People with Mental Illness.“ Journal of Sociology and Social Welfare. 27(2): 97-112.
Garman, Andrew N., David C. leach, and Nancy Spector. 2006. —Worldviews in Collision: Conflict and Collaboration across Professional Lines.“ Journal of Organizational Behavior. 27: 829-849.
Glaser, Barney G. 1999. —The Future of Grounded Theory.“ Qualitative Health Research. 9: 836-845.
Glaser, Barney G. 1998. Doing Grounded Theory: Issues and Discussions. Mill Valley, CA: Sociology Press.
Glaser, Barney G. 1992. Basics of Grounded Theory Analysis: Emergence vs. Forcing. Mill Valley, CA: Sociology Press.
Glaser, Barney G. 1978. Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mill Valley, CA: Sociology Press.
Glaser, Barney G. and Anselm L. Strauss. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine.
Goffman, Erving. 1961. Encounters. Indianapolis: Bobbs-Merrill.
Goffman, Erving. 1959. The Presentation of Self in Everyday Life. New York:
169 Doubleday Anchor.
Gomme, Ian M. and Mary P. Hall. 1995. —Prosecutors at Work: Role Overload and Strain.“ Journal of Criminal Justice. 23(2): 191-200.
Gordon, Michael and Peter A. Singer. 1995. —Decisions and Care at the End of Life.“ Lancet. 34(8968): 163-166.
Gostin, Lawrence. 1997. —Deciding Life and Death in the Courtroom: From Quinlan to Cruzan, Glucksberg, and Vacco œ A Brief History and Analysis of Constitutional Protection of the ”Right to Die.‘“ JAMA. 278(18): 1523-1528.
Gray-Toft, Pamela A. and James G. Anderson. 1986-7. —Sources of Stress in Nursing Terminal Patients in a Hospice.“ Omega. 17(1): 27-39.
Hall, Pippa. 2005. —Interprofessional Teamwork: Professional Cultures as Barriers.“ Journal of Interprofessional Care. May 2005 Supplement 1: 188-196.
Ham, Christopher. 1997. Health Care Reform: Learning from International Experience. Buckingham, UK: Open University Press.
Hasenfield, Yeheskel and Richard English. 1974. Human Service Organizations. Ann Arbor: University of Michigan Press.
Hochschild, Arlie. 1983. The Managed Heart: Commercialization of Human Feeling. Berkeley, CA: University of California.
Hospice Foundation of America. (2009). What is Hospice? Online at http://www.hospicefoundation.org Accessed February 2009.
Humphry, Derek and Mary Clement. 1998. Freedom to Die: People, Politics, and the Right-to-Die Movement. New York: St. Martin‘s Press.
Hunter, Billie. 2005. —Emotion Work and Boundary Maintenance in Hospital-Based Midwifery.“ Midwifery. 21(3): 253-266.
Hunter, Billie. 2004. —Conflicting Ideologies as a Source of Emotion Work in Midwifery.“ Midwifery. 20: 261-272.
Imershein, Allen W. and Carroll L. Estes. 1996. —From Health Services to Medical Markets: The Commodity Transformation of Medical Production and the Nonprofit Sector.“ International Journal of Health Services. 26(2): 221-238.
Imershein, Allen W. and Philip C. Rond III. 1989. —Elite Fragmentation in Health Care: Proprietary and Nonproprietary Hospitals in Florida.“ Social Science Quarterly. 70(1): 54-71.
170 Imershein, Allen W., Philip C. Rond III, and Mary P. Mathis. 1992. —Restructuring Patterns of Elite Dominance and the formation of State Policy in Health Care.“ American Journal of Sociology. 97(4): 970-993.
Jackson, Susan and Randall Schuler. 1985. —A Meta-Analysis and Conceptual Critique of Research on Role Ambiguity and Role Conflict in Work Settings.“ Organizational Behavior and Human Decision Processes. 36: 16-78.
James, Nicky. 1992. —Care = Organisation + Physical Labour + Emotional Labour.“ Sociology of Health and Illness. 14(4): 489-509.
Jeon, Yun Hee. 2004. —The Application of Grounded Theory and Symbolic Interactionism“ Scandinavian Journal of Caring Sciences. 18(3): 249-256.
Kahn, Robert. 1974. —Conflict, Ambiguity, and Overload: Three Elements in Job Stress“ Pp. 47-61 in Occupational Stress edited by A. McLean. Springfield, IL.: Thomas.
Kahn, Robert, Donald Wolfe, Robert Quinn, Deidrick Snoek, and Robert Rosenthal. 1964. Organizational Stress: Studies in Role Conflict and Ambiguity. New York: Wiley.
Kastenbaum, Robert. 2001. Death, Society and Human Experience. Boston: Allyn & Bacon.
Katz, Daniel and Robert Kahn. 1978. The Social Psychology of Organizations. New York: Wiley.
Kemery, Edward, Kevin Mossholder, and Arthur Beheian. 1987. —Role Stress, Physical Symptomatology, and Turn-over Intentions: A Causal Analysis of Three Alternative Specifications.“ Journal of Occupational Behavior. 8: 11-23.
King, Deborah A. and Timothy Quill. 2006. —Working with Families in Palliative Care: One Size Does Not Fit All.“ Journal of Palliative Medicine. 9(3): 704-715.
Kirk, Timothy W. 2007. —Managing Pain, Managing Ethics.“ Pain Management Nursing 8(1): 25-34.
Kubler-Ross, Elisabeth. 1969. On Death and Dying. New York: Macmillan.
Kulys, Regina and Sister M. Adrian Davis. 1987. —Nurses and Social Workers: Rivals in the Provision of Social Services?“ Health and Social Work. 12(2): 101-112.
Laderman, Gary. 2003. Rest in Peace: A Cultural History of Death and the Funeral Home in Twentieth-Century America. Oxford: Oxford University Press.
171 Leidner, Robin. 1993. Fast Food, Fast Talk. Service Work and the Routinization of Everyday Life. Berkeley, CA: University of California Press.
Light, Donald. 2004. —The Ironies of Success: A New History of the American Health Care ”System.‘“ Journal of Health and Social Behavior. 45: 1-24.
MacDonald, Douglas. 1991. —Hospice Social Work: A Search for Identity.“ Health and Social Work. 16(4): 274-280.
Manetta, Ameda A. and Janice G. Wells. 2001. —Ethical Issues in the Social Worker‘s Role in Physician-Assisted Suicide.“ Health and Social Work. 26(3): 160-166.
Mariner, Wendy. 1997. —Physician Assisted Suicide and the Supreme Court: Putting the Constitutional Claim to Rest.“ American Journal of Public Health. 87(12): 2058-2062.
Martin, Patricia Y. and Barry A. Turner. 1986. —Grounded Theory and Organizational Research.“ Journal of Applied Behavioral Science. 22: 141-157.
Marx, Karl. [1858] 1978. —The Grundrisse“ in The Marx-Engels Reader. Second edition. edited by Robert C. Tucker. New York: W.W. Norton and Company.
May, Carl, Christopher Dowrick, and Michael Richardson. 1996. —The Confidential Patient: The Social Construction of Therapeutic Relationships in General Medical Practice.“ The Sociological Review. 44: 187-203.
Maze, Claire D. Martino. 2005. —Registered Nurses‘ Personal Rights vs. Professional Responsibility in Caring for Members of Underserved and Disenfranchised Populations.“ Journal of Clinical Nursing. 14: 546-554.
McCallin, Antoinette. 2001. —Interdisciplinary Practice œ A Matter of Teamwork: An Integrated Literature Review.“ Journal of Clinical Nursing. 10: 419-428.
McMahon, Robin L. 2003. —An Ethical Dilemma in a Hospice Setting.“ Palliative and Supportive Care. 1(1): 79-87.
McPhail, Beverly and Diana DiNitto. 2005. —Prosecutorial Perspectives on Gender-Bias Hate Crimes.“ Violence against Women. 11: 1162-1185.
Merton, Robert K. 1968. Social Theory and Social Structure. New York: Free Press.
Mesler, Mark A. 1995. —Negotiating Life for the Dying: Hospice and the Strategy of Tactical Socialization.“ Death Studies. 19: 235-55.
Mesler, Mark A. and Pamela J. Miller. 2000. —Hospice and Assisted Suicide: The Structure and Process of an Inherent Dilemma.“ Death Studies. 24: 135-55.
172 Mesler, Mark A. and Pamela J. Miller. 1996. —Incarnating Heaven: Making the Hospice Philosophy Mean Business.“ Journal of Sociology and Social Welfare. 23(3): 31-49.
2004. —Michigan Hospice Shows How to Bridge Gaps between Hospice, Nursing Homes: Conflicting Policies Cause Opportunities to Be Lost.“ Hospice Management Advisor. 9(6): 61-65.
Miller, Pamela J., Mark A. Mesler, and Susan T. Eggman. 2002. —Take Some Time to Look inside Their Hearts: Hospice Social Workers Contemplate Physician Assisted Suicide.“ Social Work in Health Care. 35(3): 53-64.
Miller, Pamela J. and Paula B. Mike. 1995. —The Medicare Hospice Benefit: Ten Years of Federal Policy for the Terminally Ill.“ Death Studies. 19: 531-542.
Mishler, E. 1984. The Discourse of Medicine. Norwood, NJ: Ablex.
Monahan, Molly B. 2003. Rationality Unveiled: Philosophy and Practices in a Hospice Organization. Unpublished PhD dissertation.
Monroe, Jacquelyn and Roenia Jittaun DeLoach. 2004. —Job Satisfaction: How Do Social Workers Fare with Other Interdisciplinary Team Members in Hospice Settings?“ Omega. 49(4): 327-346.
Morita, T., J. Tsunoda, and S. Inoue. 2000. —Concerns of Japanese Hospice Inpatients about Morphine Therapy as a Factor in Pain Management. A Pilot Study.“ Journal of Palliative Care. 16(4): 54-58.
Munley, Anne, Cynthia S. Powers, and John B. Williamson. 1982. —Humanizing Nursing Home Environments: The Relevance of Hospice Principles.“ The International Journal of Aging and Human Development. 15(4): 263-284.
National Hospice and Palliative Care Organization. (NHPCO). 2008. Online at http://www.nhpco.org Accessed February 2008.
Oliver, Debra Parker, Elaine M. Wittenberg-Lyles, and Michele Day. 2007. —Measuring Interdisciplinary Perceptions of Collaboration on Hospice Teams.“ American Journal of Hospice and Palliative Medicine. 24(1): 49-53.
Oliver, Debra Parker, Elaine M. Wittenberg-Lyles, and Michele Day. 2006. —Variances in Perceptions of Interdisciplinary Collaboration by Hospice Staff.“ Journal of Palliative Care. 22(4): 275-280.
Oliver, Debra Parker and Marlys Peck. 2006. —Inside the Interdisciplinary Team Experiences of Hospice Social Workers.“ Journal of Social Work in End-of-Life and Palliative Care. 2(3): 7-21.
173 Olk, Mary E. and Myrna L. Friedlander. 1992. —Trainees‘ Experiences of Role Conflict and Role Ambiguity in Supervisory Relationships.“ Journal of Counseling Psychology. 39(3): 389-397.
Parham, Lori. 2002. Contrasts in Care Work: Hospice Care in Nursing Homes. Unpublished PhD dissertation.
Parker-Oliver, Debra, Laura R. Bronstein, and Lori Kurzejeski. 2005. —Examining Variables Related to Successful Collaboration on the Hospice Team.“ Health and Social Work 30(4): 279-286.
Parsons, Talcott. 1951. The Social System. New York: Free Press.
Payne, Nicola. 2000. —Occupational Stressors and Coping as Determinants of Burnout in Female Hospice Nurses.“ Journal of Advanced Nursing. 33(3): 396-405.
Powell, Walter W. and Paul J. DiMaggio. 1991. The New Institutionalism in Organizational Analysis. Chicago: University of Chicago Press.
Putnam, Constance. 2002. Hospice or Hemlock? Searching for Heroic Compassion. Westport, CT: Praeger Publishers.
Putnam, L.L. 1986. —Contradictions and Paradoxes in Organizations“ Pp. in Organization-Communication: Emerging Perspectives. Norwood, N.J.: Ablex.
Quill, Timothy E., Rebecca Dresser, and Dan Brock. 1997. —The Rule of Double Effect: A Critique of Its Role in End-of-Life Decision Making.“ New England Journal of Medicine. 337: 1768-1771.
Quill, Timothy E., Bernard Lo, and Dan Brock. 1997. —Palliative Options of Last Resort: A Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary Active Euthanasia.“ JAMA 278(23): 2099-2104.
Rahman, Hafsa. 2000. —Journey of Providing Care in Hospice: Perspectives of Occupational Therapists.“ Qualitative Health Research. 10(6): 806-818.
Redman, Barbara K. and Martha N. Hill. 1997. —Studies of Ethical Conflicts by Nursing Practice Settings or Roles.“ Western Journal of Nursing Research. 19(2): 243- 261.
Reese, Dona J. and Mary-Aim Sontag. 2001. —Successful Interprofessional Collaboration on the Hospice Team.“ Health and Social Work. 26(3): 167-175.
Relman, Arnold. 1980. —The New Medical-Industrial Complex.“ New England Journal of Medicine. 303(17): 963-70.
174 Ritzer, George. 2000. The McDonaldization of Society Thousand Oaks, CA: Pine Forge Press.
Rizzo, John, Robert House, and Sidney Lirtzman. 1970. —Role Conflict and Ambiguity in Complex Organizations.“ Administrative Science Quarterly. 15: 150-163.
Roff, Lucinda Lee, Cassandra Simon, David Klemmmack, and Ruta Butkeviciene. 2006. —Levels of Death Anxiety: A Comparison of American and Lithuanian Health and Social Service Personnel.“ Death Studies. 30:665-675.
Rogers, Everett and Dilip Bhowmik. 1970. —Homophily-Heterophily: Relationship Concepts for Communication Research.“ Public Opinion Quarterly. 34: 523-538.
Rosen, R.A. Hudson. 1970. —Foreman Role Conflict: An Expression of Contradictions in Organizational Goals.“ Industrial and Labor Relations Review. 23(4): 541-552.
Schneider, Benjamin. 1980. —The Service Organiztion: Climate is Crucial.“ Organizational Dynamics. 9(2): 52-65.
Schwartz, Judith Kennedy. 2003. —Understanding and Responding to Patients‘ Requests for Assistance in Dying.“ Journal of Nursing Scholarship. 35(4): 377-384.
Siegall, Marc and L.L. Cummings. 1995. —Stress and Organizational Role Conflict.“ Genetic, Social and General Psychologyl Monographs. 121(1): 67-95.
Shead, Helen. 1991. —Role Conflict in Student Nurses: Towards a Positive Approach for The 1990s.“ Journal of Advanced Nursing. 16: 736-740.
Smyth, Terry. 1985. —Confronting Conflict.“ Nursing Mirror. 160(10): 23-25.
Soderfeldt, Bjorn, Marie Soderfeldt, Carles Muntaner, Patricia O‘Campo, Lars-Erik Warg, and Carl-Goran Ohlson. 1996. —Psychosocial Work Environment in Human Service Organizations: A Conceptual Analysis and Development of the Demand- Control Model.“ Social Science and Medicine. 42(9): 1217-1226.
Sontag, Mary-Aim. 1996a. —A Comparison of Hospice Programs Based on Medicare Certification Status.“ American Journal of Hospice and Palliative Care. 13: 32- 41.
Sontag, Mary-Aim. 1996b. —Hospices as Providers of Total Care in One Western State.“ Hospice Journal. 11: 71-94.
Starr, Paul. 1982. The Social Transformation of American Medicine. Basic Books.
Stone, Deborah. 1997. —The Doctor as Businessman: The Changing Politics of a Cultural Icon.“ Journal of Health Politics, Policy, and Law. 22(2): 533-556.
175 Stryker, Sheldon and Anne Statham Macke. 1978. —Status Inconsistency and Role Conflict.“ Annual Review of Sociology. 4: 57-90.
Tracy, Sarah J. 2004. —Dialectic, Contradiction, or Double Bind? Analyzing and Theorizing Employee Reactions to Organizational Tension.“ Journal of Applied Communication Research. 32(2): 119-146.
Trethewey, Angela and Karen L. Ashcraft. 2004. —Special Issue Introduction œ Practicing Disorganization: The Development of Applied Perspectives on Living with Tension.“ Journal of Applied Communication Research. 32(2): 81-88.
Tubre, Travis C. and Judith M. Collins. 2000. —Jackson and Schuler (1985) Revisited: A Meta-Analysis of the Relationships Between Role Ambiguity, Role Conflict, and Job Performance.“ Journal of Management. 26(1): 155-169.
Vachon, Mary. 1995. —Staff Stress in Hospice/Palliative Care: A Review.“ Palliative Medicine. 9: 91-122.
Vachon, Mary. 1987. Occupational Stress in the Care of the Critically Ill, the Dying, and the Bereaved. New York: Hemisphere Publishing.
Vachon, Mary. 1979. —Staff Stress in the Care of the Terminally Ill.“ Quality Review Bulletin. 5: 13-17.
Vachon, Mary. 1978. —Motivation and Stress Experienced by Staff Working with the Terminally Ill.“ Death Education. 2: 113-122.
Valentine, Patricia E.B. 2001. —A Gender Perspective on Conflict Management Strategies of Nurses.“ Journal of Nursing Scholarship. 33(1): 69-74.
Valentine, Patricia E., Sharon Richardson, Marilynn J. Wood, and M. Dianne Godkin. 1998. —Nurse Educators‘/Administrators‘ Ways of Handling Conflict.“ Journal of Professional Nursing. 14(5): 288-297.
Vernacchio, Louis. 1996. —Physician-Assisted Suicide: Reflections of a Young Doctor.“ America. August 31.
Verpoort, Charlotte, Chris Gastmans, and Bernadette Dierckx de Casterle. 2004. —Palliative Care Nurses‘ Views on Euthanasia.“ Journal of Advanced Nursing. 47(6): 592-600.
Wallace, S.P. and C.L. Estes. 1996. —Health Policy for the Elderly“ Pp. 483-498 in Aging for the Twenty-First Century: Readings in Social Gerontology edited by Jill Quadagno and Debra Street. New York: St. Martin‘s Press.
176 Ward, Elijah G. and Audrey K. Gordon. 2006-2007. —Looming Threats to the Intimate Bond in Hospice Care? Economic and Organizational Pressures in the Case Study of a Hospice“ Omega. 54(1): 1-18.
Warren, Carol A.B. 2002. —Qualitative Interviewing“ Pp.83-101 in Handbook of Interview Research: Context and Method edited by James F. Gubrium and James A. Holstein. Thousand Oaks, CA: Sage.
Weber, Max. [1947] 1964. The Theory of Social and Economic Organization. Translated by Henderson and Parsons. Glencoe, IL: Free Press.
Weedman, Judith. 1998. —Burglar‘s Tools: The Use of Collaborative Technology in Professional Socialization.“ Online at https://www.asis.org/Conferences/MY98/Weedman.htm Accessed March 12, 2009.
Whetstine, Leslie. 2007. —Advanced Directives and Treatment Decisions in the Intensive Care Unit.“ Critical Care. 11(4): 150-151.
Yang, Jixia and Kevin W. Mossholder. 2004. —Decoupling Task and Relationship Conflict: The Role of Intragroup Emotional Processing.“ Journal of Organizational Behavior. 25: 589-605.
Zimmerman, Stephanie and James L. Applegate. 1992. —Person-Centered Comforting in the Hospice Interdisciplinary Team.“ Communication Research. 19(2): 240-263.
Zink, Therese, C. Jeff Jacobson Jr., Stephanie Pabst, Saundra Regan, and Bonnie S. Fisher. 2006. —A Lifetime of Intimate Partner Violence: Coping Strategies of Older Women.“ Journal of Interpersonal Violence. 21: 634-651.
177 BIOGRAPHICAL SKETCH
Gina Carreno-Lukasik was born August 21, 1974 in Tampa, Florida. After graduating from the Academy of the Holy Names in 1992, she earned her Bachelors of Arts in Sociology and English in 1996 from Furman University in Greenville, South Carolina. Gina began graduate school at Florida State University that same year, earning a Masters degree in 1998 and completing her dissertation in 2009. She has taught sociology as an Instructor at Florida Atlantic University since fall 2002. Gina lives in Boynton Beach, Florida with her husband Greg and their cat Kitty, and they are happily expecting their first daughter in June/July 2009.
178