The topic of death is one that, understandably, most people would prefer to avoid. This, however, can create a lack of clarity about what makes a “good death,” a concept originating from the hospice movement.
In a paper published in the American Journal of Geriatric Psychiatry in April 2016, researchers at the University of California, San Diego (UCSD) reviewed 36 peer-reviewed studies that explored definitions of “successful dying” from the point of view of patients, family members, and healthcare providers (HCPs). The majority of studies reviewed used qualitative methods, while others used quantitative or mixed methods. Noting the limited quality and quantity of relevant data, the paper also calls for increased research and public dialogue on the topic.
According to coauthor Emily A. Meier, PhD, a clinical psychologist who works with the Doris A. Howell Palliative Care Service team at UCSD: “Many of our patients do not experience a good death, often because there is a lack of communication between the patient, family members, and health care providers. Patients may not want to express to their loved ones that they no longer want to pursue aggressive treatments, family members may encourage patients to pursue aggressive treatments, and health care providers often have a difficult time breaking bad news, which does not allow time for the patient and the family to prepare for death,” she told Psychiatry Advisor.
The aim of the review was to shed light on unmet needs of patients approaching death and to suggest an approach to better meet those needs. Of 11 core themes the authors observed pertaining to the concept of a good death, the top 3 themes across the 3 groups were: preferences for dying process, pain-free status, and emotional well-being. These themes were reported by 94%, 81%, and 64% of participants, respectively.
In some themes, there were discrepancies between family and patient perspectives, though not as sizeable as those between patients and HCPs. Compared with patient perspectives, those of family members more often included life completion, quality of life, and dignity, while patient themes more frequently included religiosity/spirituality compared with family members’ themes. The authors do not interpret these findings as indicating that the other themes are less important to patients, but perhaps that researchers are not asking the right questions to truly capture patients’ preferences. It may also be that patients do not feel comfortable expressing their wishes to HCPs and family members.