Metaphors for ‘good’ and ‘bad’ deaths

Understanding the range of patients' views about good and bad deaths may be useful to clinicians caring for terminally ill patients. Our current understanding of good and bad deaths, however, comes primarily from input from families and clinicians. This study aimed to learn how terminally ill men conceptualize good and bad deaths. We conducted semistructured interviews with 26 men identified as having terminal heart disease or cancer. Participants described good and bad deaths in a section of open-ended questions. Participants also answered closed-ended questions about specific end-of-life scenarios. The open-ended questions were tape recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. We found heterogeneity in responses to questions about good deaths, bad deaths, and preferred dying experiences. Participants voiced multiple reasons for why dying in one's sleep led to a good death and why prolonged dying or suffering led to a bad death. Participants did not hold uniform views about the presence of others at the very end of life or preferred location of dying. In discussing the end of life with terminally ill patients, clinicians may want to identify not only their patients' views of good and bad deaths but also how the identified attributes contribute to a good or bad death. The discussion can then focus on what might interfere with patients' attainment of their preferred dying experience and what may be available to help them achieve a death that is most consistent with their wishes.

Background Nurses have a key role to play in ensuring that high-quality care is given to patients throughout their disease trajectory, including at the end of life. An increase in the ageing population in Western countries means that nurses are responsible for providing end-of-life care in a range of clinical settings. Nursing students are often exposed to providing end-of-life care while on clinical placement. Aim The aim of this study was to explore the definition and construction of both a good and bad death from the perspective of a cohort of Australian third-year undergraduate nursing students. Methods As part of a larger mixed-method survey study of third-year undergraduate nursing students’ perspectives about end-of-life care, qualitative open-ended questions about what constituted a good and a bad death were asked within the survey. These were supplemented by questions on their positive and negative experiences of death and dying. The responses to the open-ended questions were analysed using a thematic analysis. Findings A total of 225 nursing students completed the survey. Participants were asked about death and dying in the dichotomous terms of negative and positive experiences and what constituted a good or bad death. The analysed themes included: pain free or suffering; acceptance or non-acceptance of death; agreements or conflict; family support or no family support; respecting wishes or ignoring wishes; quality of life in the dying process or futile treatment; prepared for death or unprepared for death; good or bad circumstances; influence of good and bad experiences. Conclusions Nursing students had clear understandings of what they considered to be a good and a bad death. They viewed the achievement of a good death as a reflection on their clinical practice. As such, achieving a good death experience for people and their families was viewed as paramount to providing quality nursing care. This knowledge will aid in the education of nursing students in regard to providing the best possible circumstances for a good death for clients.

This chapter explores the notion of ‘bad death’ overlooked in much of contemporary literature within palliative care and the sociology of death and dying, which has conventionally concerned itself with and been devoted to developing or investigating the idea of ‘good death’. In the chapter, the author conceptually outlines five forms of ‘bad death’ – dying unexpectedly, dying unprepared/unresolved, dying painfully, dying alone and dying undignified – and illustrates and discusses each of them conceptually, theoretically and empirically based on insight from existing research. The purpose of the chapter is thus to shed light on the neglected ‘bad death’ and to show how a focus on avoiding ‘bad deaths’ may provide a fruitful pathway for arriving at some sort of ‘good death’ or ‘not so bad death’. Moreover, the chapters urges us to consider how instead of being professionally and academically preoccupied with ‘best practice’ as an ideal, we might ponder what can be learned from contemplating and studying ‘worst cases’ when it comes to death and dying.

The components of good and bad deaths have not been well elucidated in the literature. Furthermore, the value of using narratives in palliative care research has not been extensively explored. We invited people involved in palliative care (patients, caregivers, physicians, and nurses) to tell us their stories of good and bad deaths, and 15 responded. We asked them to tell us about the good and bad deaths that they had witnessed and to describe what a good death and a bad death would be like for them, personally. Several common themes emerged from their good death narratives: a death free from pain, the sense of a life well lived, and a sense of community. Common bad death themes included a painful death and a loss of control and independence. We found that the use of story in palliative care provided an opportunity to create meaning and to heal for both the teller and the listener.

This paper reports a study investigating hospital nurses' experiences of death and dying. Despite advances in medical science and health care, together with the push towards individualizing approaches to patient care in the developed world, significant variation in the care of dying patients still exists. The international issues relating to differing types of death reveal both its complexity and diversity, with evidence of 'good death' experiences largely focused on hospice experiences, and a lack of research on death in general hospitals. In-depth interviews were conducted in 1999 with a convenience sample of 29 Registered Nurses in the United Kingdom based on their hospital death experiences. Semiotic analysis was used to identify the 'deep structures' that underlie and form part of cultural communication as a way of understanding how nurses made sense of death. Data interpretation was enhanced through the use of a typology of 'good and bad deaths'. The findings suggest that different experiences of death are based on the extent to which nurses were able to exert control over the dying process. The management of death in hospital is a major source of conflict for nurses. Good and bad death experiences were constructed according to their impact on the sentimental order of the ward, the intangible, but real patterns of mood that influenced nurses' feelings. Moreover, good and bad deaths focused less on patients' needs and the dying process and more on the death event and nurses' abilities to manage organizational demands. There is a need to improve communication with patients and families about diagnosis and prognosis to ensure that effective communication takes place and 'blocking behaviour' is avoided. The findings also challenge practitioners to focus attention on death as a process, and to prioritize patients' needs above those of the organization. Moreover, there is the need for guidelines to be developed enabling patients to have a role in shaping events at the end of their lives.

A scoping research literature review on "bad death" was undertaken to assess the overall state of the science on this topic and to determine what evidence exists on how often bad deaths occur, what contributes to or causes a bad death, and what the outcomes and consequences of bad deaths are. A search for English-language research articles was conducted in late 2016, with 25 articles identified and all retained for examination, as is expected with scoping reviews. Only 3 of the 25 articles provided incidence information, specifying that 7.8 to 23% of deaths were bad and that bad deaths were more likely to occur in hospitals than in community-care settings. Many different factors were associated with bad deaths, with unrelieved pain being the most commonly identified. Half of the studies provided information on the possible consequences or outcomes of bad deaths, such as palliative care not being initiated, interpersonal and team conflict, and long-lasting negative community effects. This review identified a relatively small number of research articles that focused in whole or in part on bad deaths. Although the reasons why people consider a death to be bad may be highly individualized and yet also socioculturally based, unrelieved pain is a commonly held reason for bad deaths. Although bad and good deaths may have some opposing causative factors, this literature review revealed some salient bad death attributes, ones that could be avoided to prevent bad deaths from occurring. A routine assessment to allow planning so as to avoid bad deaths and enhance the probability of good deaths is suggested.

Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana

Patient involvement in decision-making has been advocated to improve the quality of life at the end of life. Although the size of the oldest segment of the population is growing, with greater numbers of older adults facing the end of life, little is known about their preferences for the end of life. This study aimed to explore the attitudes of older adults with medical illness about the end of life, and to investigate whether current values could be extended to end-of-life preferences. Descriptive study with interviews using open- and closed-ended questions. Patients attending two university-affiliated geriatric clinics were interviewed in a private conference room near the clinic they attended or in their homes. Sixteen older men and women identified by their physicians as having nonterminal heart disease or cancer. The interview contained open-ended questions such as: "What are the most important things in your life right now?" and "What would you consider a good/bad death?" The interview also contained closed-ended questions about symptoms, quality of life, and health status. Additional questions elicited preferences for the end of life, such as location of death and the presence of others. The open-ended questions were tape-recorded, transcribed, and analyzed using qualitative methods. The closed-ended questions were analyzed using descriptive statistics. Patients with heart disease and cancer provided similar responses. Participants' views about good deaths, bad deaths, and end-of-life scenarios were heterogeneous. Each participant voiced a unique combination of themes in describing good and bad deaths. Because each participant described a multifaceted view of a good death, for instance, no theme was mentioned by even half of the participants. Participants provided differing explanations for why given themes contributed to good deaths. Currently valued aspects of life were not easily translated into end-of-life preferences. For example, although the majority of participants identified their family as being important, many gave reasons why they did not want their family members present when they died. Because of the heterogeneity of views and the difficulty in inferring end-of-life preferences from current values, older adults should be asked not only questions about general values, but also specific questions about their end-of-life choices and the reasons for these choices. A thorough understanding of an individual's end-of-life preferences may help health professionals working with older adults develop patient-centered care plans for the end of life.

This qualitative study explored the perception of good and bad death among 15 social workers serving in elderly care facilities in Korea. A good death involved dying peacefully without much suffering, dying with family members present, death following a good life, and believing in a better afterlife. A bad death involved burdening children in the dying process, dying after extensive illness, dying isolated from family, and death from suicide. To ensure a good death and avoid a bad death for elders, social workers are encouraged to closely engage with not only elders but also their families.

The development of palliative care originated from shortcomings in mainstream health services. Palliative care aims to cater for both the psycho-social needs of dying patients and the allieviation of their physical symptoms. This is reflected by the good and bad death perceptions of palliative care workers, though increasing signs of institutionalization in palliative care have challenged the idealization of a good death. This study aimed to investigate the health professionals' perception of both a good and a bad death and their perception of patients' awareness context. Seventy questionnaires were distributed to nurses and social workers. The 50 returned questionnaires revealed that health professionals perceived a good death as controlling the patients' physical symptoms and psychologically preparing them, whilst a bad death was perceived as the inability to control pain and deal with any psychological distress. Factor analysis identified three main factors (lack of patient distress, patient control and staff's supporting role perceptions) in the perception of a good death whereas four main factors (the negative effect of death on the family, a patient's non-acceptance of death, not dealing with patients' fears and the age of a dying person) were identified with the perception of a bad death. Overall, health professionals perceived themselves to be open and sensitive in communicating with patients although over half felt poorly supported by other staff.

The range of end-of-life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as 'good' and others as 'bad'. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n=39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the 'good death' are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end-of-life options.

Thanatologists who have researched mortuary beliefs and practices from around the world posit that many societies differentiate between good and bad deaths. The current study utilized in-depth interviews with 30 Akan culture experts to investigate what the Akan ethnic group of Ghana considers to be good death. The results show that Akan good death is natural harmonious death that occurs at advanced age. The deceased would also have experienced a meaningful life devoid of immorality or turpitude. While the bodies of decedents of Akan bad deaths are interred without much ceremony, good deaths are associated with elaborate burial rites and funerary obsequies that serve to honor the decedent. Findings show that Akans generally aspire to achieve a good death, be granted solemn burial rites, and to receive a fitting funerary celebration that would launch them on a journey to join ancestral kin in the hereafter.

This qualitative study explores socio-cultural and health systems factors that may impact on death reporting by lay people to registry systems at the commune level. Information on local perceptions of death and factors influencing death reporting were gathered through nine focus group discussions with people of different religions and ethnic affiliations in a rural district of northern Vietnam. Participants classified deaths as "elderly deaths," "young deaths," and "child deaths." Child deaths, including newborn deaths, used to be considered punishment for sins committed by ancestors, but this is no longer the case. Concepts of the human soul and afterlife differ between the Catholic and Buddhist groups, influencing funeral rituals and reporting, especially of infant deaths. Participants regarded elderly deaths as "natural" and "deserved," while young deaths were seen as either "good deaths" or "bad deaths." "Bad deaths" were defined as deaths of "dishonourable" persons who had led a "bad life" involving activities such as gambling, drinking or stealing. The causes of "bad deaths" and deaths due to stigmatized diseases (e.g., HIV/AIDS, tuberculosis and leprosy) were often concealed by the family. The study suggests that the risk of under-reporting deaths seems to be largest for deaths of infants and "bad deaths." Little awareness of regulations and lack of incentives for reporting or lack of sanctions for not reporting deaths also result in under-reporting of deaths. Therefore, education programs and enforcement of legal regulations on death notification should be emphasized. The risk of misreporting the real causes of "bad deaths" and deaths due to stigmatized diseases should be considered in verbal autopsy interviews. Using different sources of information (triangulation) is useful in order to minimize both under-registration and misreporting causes of death.

Narrative nuances on good and bad deaths: internists’ tales from high-technology work places

The objective of this study was to identify and describe the domains that define a 'good' versus 'bad' death from the perspective of patients with advanced AIDS. We analyzed qualitative data from face-to-face interviews with 35 patients with C3 AIDS. An experienced research interviewer asked the patients to describe a good and bad death. Investigators used the principles of grounded theory to analyze the interview transcripts and identify the major domains defining a 'good' versus a 'bad' death. We identified 15 domains, of which 12 were mentioned by at least two participants. The 12 domains include: symptoms, quality of life, people present, dying process, location, a sense of resolution, patient control of treatment, issues of spirituality, death scene, physician-assisted suicide, aspects of medical care, and acceptance of death. Within these, we identified 38 sub-categories representing specific aspects of the domains that shape a 'good' versus 'bad' death for the patients in this study. The identified 12 major domains encompass the major determinants of a 'good' versus 'bad' death from the perspective of patients with advanced AIDS. A better understanding of these domains may enable clinicians to more fully appreciate the experiences of their dying patients and identify ways to improve the care they provide at the end of life.