In Search of a Good Death: Observations of Patients, Families, and Providers

Professional organizations and the public have recently made care of the dying a national priority (1-7). Despite this, however, we remain confused about what constitutes a good death (8). Some patients with terminal illnesses choose to leave the conventional medical setting and receive hospice care in their home, surrounded by family. Others seek experimental chemotherapy in an intensive care unit. In each of these vastly different scenarios, the perception of the quality of death is constructed by family, friends, and health care providers, not solely by the dying person. However, little empirical evidence exists to document these varied perspectives (9, 10). We conducted this study to describe the attributes of a good death, as understood by various participants in end-of-life care. To evaluate the relative importance of these attributes, we compared the perspectives of different groups of persons who had experienced death in their personal or professional lives. Methods Design We used focus groups and in-depth interviews to identify the attributes of a good death. These qualitative methods, which are common in exploratory studies, generate hypotheses and provide rich descriptive information about a phenomenon (11-13). Researchers do not impose theoretical assumptions a priori but instead let participants frame questions from the ground up. Participants Over a 4-month period, we convened 12 focus groups, each of which had an average of 6 participants. A full spectrum of persons involved with end-of-life carephysicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family memberswere included (Table 1) (12). Groups were stratified by role. Participants were recruited from Duke University Medical Center, Durham Veterans Affairs Medical Center, and a local community hospice in Durham, North Carolina. Nonphysician providers were recruited from convenience samples generated by e-mail and departmental advertising. Physicians were recruited from the attending staff of the Duke University Medical Center, Department of Medicine. We stratified physicians by level of appointment (assistant, associate, or full professor), randomized the lists, and recruited potential participants in order, ensuring that the final group represented each career level. Patients were recruited by telephone from an ethnically stratified sample enrolled in oncology and HIV clinics. Family members were recruited from a stratified random sample of recently bereaved relatives of Veterans Affairs patients who had died 6 months to 1 year earlier. For each group, we continued to call potential participants until we obtained 6 to 8 participants per group. Table 1. Focus Group Composition We conducted separate groups for African-American and white patients, with trained facilitators from the respective ethnic groups. Participants were compensated for their time. The institutional review boards of the Durham Veterans Affairs Medical Center and the Duke University Medical Center approved the study. Data Collection We asked focus group participants to discuss their experiences with the deaths of family members, friends, or patients and to reflect on what made those deaths good or bad. When necessary, we asked probing questions to clarify a comment or obtain more detail (Appendix). We took several steps to ensure reliability and validity, which are often called exhaustiveness and trustworthiness in qualitative research (11). First, we conducted focus groups until the same themes were repeated and no new themes emerged. Theme exhaustiveness is reached when similar themes are generated by participants from very different social backgrounds. Next, after repeatedly analyzing focus group transcripts, we conducted in-depth interviews with two members from each groupthe most and least talkative participants. The most talkative participants were usually willing to provide information; the least talkative participants were interviewed to elicit possible silent but dissenting viewpoints. No new themes emerged through these interviews, thereby confirming exhaustiveness. The interviewees were presented with our analyses and were asked to evaluate our interpretations. Trustworthiness is noted when participants respond affirmatively to researchers' interpretations (12). Statistical Analysis Focus groups and interviews were audiotaped and transcribed. We did not use quantitative methods of inter-rater agreement. Instead, we followed a grounded theory approach with a constant comparisons method and its related open and axial coding techniques (10, 11). During open coding, four investigators independently read an example of a transcript and analyzed it for common and recurrent themes pertaining to qualities of a good death. These summaries were compared for theme agreement and disagreement. One coder used qualitative software (NUDIST, Scolari Sage Publications Software, Thousand Oaks, California) to apply the coding scheme to the remaining transcripts. Throughout the coding process, all four investigators reviewed theme exemplars as a check on coding validity. During axial coding, the investigators developed further conceptual domains by comparing themes within and between transcripts (11). After identifying more than 70 attributes, we collapsed the full list into 6 broad domains. Although the 6 themes are presented as conceptually distinct, attributes overlapped between domains. For example, attention to spiritual concerns may be primarily associated with a process of completion but may also affect patients' physical pain. The illustrative quotes have been edited for ease of reading. We did not make any substantive changes but deleted repeated words and corrected grammatical inconsistencies that are common in spoken language. Results Focus group participants ranged in age from 26 to 77 years (mean age, 47 years) (Table 2). Sixty-four percent were women, 70% were white, and 28% were African American. Most of the sample was Protestant (61%), 18% was Roman Catholic, and 8% identified themselves as Jewish. Six themes emerged: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person (Table 3). Table 2. Characteristics of Focus Group Participants Table 3. Components of a Good Death Pain and Symptom Management Many focus group participants feared dying in pain. Portrayals of bad deaths usually mentioned inadequate analgesia during cure-directed therapies that were perceived as too aggressive. One nurse, discussing a patient, said: His disease was very widespread. One of the interns or residents said, We don't want you on morphine. You're going to get addicted. I said, You must be joking. This guy is having pain, and he's not going to make it out of the hospital. He stayed on the surgical service and he died in 4 days, in pain. Participants were concerned with both current pain control and control of future symptoms. Intrusive thoughts of breakthrough pain or extreme shortness of breath produced anxiety that could be relieved with appropriate reassurance. One man with AIDS said, I don't want to be in pain, and I've discussed it with my doctor. He said, Oh, don't worry about pain. We'll put you on a morphine drip. That sort of eased my mind. Clear Decision Making Participants stated that fear of pain and inadequate symptom management could be reduced through communication and clear decision making with physicians. Patients felt empowered by participating in treatment decisions. One patient said: This is my medical problem. Sometimes I don't want to stay on the rigid schedule, and he [the physician] would say, I would like for you to stay on that, but you are the manager of your ship. You decide how fast you want to paddle, if you want to go backwards, sideways, or make a 360 turn. Alternately, descriptions of bad deaths frequently included scenarios in which treatment preferences were unclear. Patients felt disregarded, family members felt perplexed and concerned about suffering, and providers felt out of control and feared that they were not providing good care. Decisions that had not previously been discussed usually had to be made during a crisis, when emotional reserves were already low. One social worker, speaking about her mother, said: I had never talked to her about end-of-life issues. I'm trying to communicate with my family over the phone. What do we do? She's intubated, her labs are worse. The doctor said, We really don't think that she's going to make it, and we have to consider withdrawing life support. I said, I'm sorry, but that's not a decision I can make. One physician spoke about the anticipatory conversations she usually had with patients who had advanced disease, using one particular patient as an example: This person had mets everywhere. I explained to him, There's nothing that's going to bring your bones back. In this situation, somebody would do CPR [cardiopulmonary resuscitation]. That involves pumping on your chest, and it would likely fracture your bones. I was very simple about it. I said, The alternative, which I would recommend, is we make sure we give you enough pain medication that you will not suffer. I find that the more up-front I am, most people are appreciative of that. Preparation for Death Participants voiced a need for greater preparation for the end of life. Patients usually wanted to know what they could expect during the course of their illness and wanted to plan for the events that would follow their deaths. One patient said, I have my will written out, who I want invited to the funeral. I have my obituary. That gives me a sense of completion that I don't have to put that burden on someone else. It's to prepare myself for it. Family members felt a need to learn about the physical and psychosocial changes that would occur as death approached. Participants spoke of scenarios in which a lack of preparation ad