Researchers in the Department of Psychiatry at the Moores Cancer Center in La Jolla, California attempted to determine what constitutes a good death by conducting a literature review of qualitative and quantitative studies that defined or described a good death. Most of the studies were conducted in cancer treatment settings in the United States. Thirty-six studies met eligibility criteria, and 11 core themes of a good death were identified.1
Not surprisingly, they included preferences for a specific dying process, pain-free status, religiosity/spiritualty, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with healthcare providers, and “other.” Patients rated their wishes (preferences for dying processes), comfort (pain-free status), and emotional well-being as the most important characteristics of a good death. In contrast, family members rated life completion, quality of life, dignity, and presence of family as the most important components of a good death. The researchers noted that this disconnect between patient and family perspectives creates divergent perspectives on end-of-life care.
We’ve all seen this happen. A patient wants to discontinue treatment while the family wants to push on. A patient’s daughter who lives far away rushes to the bedside of her dying father. Clearly, patients and family members have different needs and wishes at the end of life, and clinicians need to respond accordingly. It’s not surprising that these conversations have been called “difficult conversations,” and unfortunately, for some patients, these conversations never occur. Not acknowledging or addressing the end-of-life wishes of both the patient and the family further the disconnect between these two groups, and reduce the likelihood of a good death.
The researchers noted that we often talk about personalized medicine and personalized care; however, we should also talk about personalized death. I would also add that these conversations need to be ongoing; all too often we ask patients about their wishes at one point in time (eg, when advance directives are being discussed) and fail to subsequently further discuss their wishes as their clinical status changes. It’s only when death is likely—or imminent—that we again talk about end-of-life wishes.
These conversations also tend to center around the patient’s wishes, which may align with the family’s wishes, but often do not. Including family members in these discussions is paramount.
The study’s findings also suggest that separate conversations are in order. For instance, conversations with the patient might focus on how and where the patient wishes to die, and include a discussion about pain control. In addition, the patient’s emotional well-being needs to be frequently assessed, with action taken when indicated. Conversations with family members might include asking about the patient’s life story (eg, life completion), how they view a “good death” for the patient, and their desired level of involvement during the patient’s final months and days.
Psychologists and philosophers have sought to answer the question of “what do people want in life?” For most people, it’s significance and contribution, and making a difference in the lives of others. To this end, we as clinicians can initiate conversations with patients about their life stories and how they would like to be remembered. We can engage the family members in these conversations, and in doing so, may rekindle memories long ago forgotten by the patient.
We’ve all too often witnessed the “bad deaths,” the ones that failed the patient and family. Now that more is known about a good death from both the patient’s and family’s point of view, we can apply this knowledge in daily practice and hopefully, help ensure a good death for all of our patients.
- Meier E., Gallegos JV, Thomas LPM, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry 2016; 24(4):261-271.
Lisa Schulmeister, MN, RN, ACNS-BC, FAAN is an oncology nursing consultant and editor-in-chief of Oncology Nursing News.