(After completing a bachelor’s degree in neuroscience at the U.K.’s University of Manchester, Tim Newman changed course entirely to work in sales, marketing, and analysis. Realizing that his heart truly lies with science and writing, he changed course once more and joined the Medical News Today team as a News Writer. Now Senior Editor for news, Tim leads a team of top notch writers and editors, who report on the latest medical research from peer reviewed journals. This article was published in MedicalNewsToday and is posted with permission.)
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Although dying well is covered thoroughly by lay literature, scientific literature on the matter is much more sparse.
The concept of discovering the meaning of life when one is faced with his or her mortality is a common theme in films, novels and biographies.
But when the end comes, what is the general consensus? What do the dying and the soon-to-be bereaved consider to be a good death?
Some believe that American culture, indeed Western culture at large, is becoming increasingly death-phobic.
In sharp contrast to 100 years ago when seeing a dead body would be commonplace, nowadays, individuals outside of the relevant industries (health, funeral homes) very rarely see a corpse. Consequently, death is less likely to be discussed and considered.
Discussing death
In hospices and palliative care settings, these themes are more often debated. But coming up with a neat definition of a “good death” that fits all viewpoints is challenging, and there is very little research to back up the conversation.
Certain organizations have attempted to sum up the principles of dying well. According to an Institute of Medicine report, a good death is:
“Free from avoidable distress and suffering for patient, family and caregivers, in general accord with the patient’s and family’s wishes, and reasonably consistent with clinical, cultural and ethical standards.”
Few would disagree with most of the points listed above, but what is the split between each facet? What are the primary objectives for someone who is facing imminent death?
A research team from the Sam and Rose Stein Institute for Research on Aging at the University of California-San Diego School of Medicine decided to carry out a review of the existing literature to uncover what a good death entails.
The secret of a ‘good death’
The team, headed up by Dr. Dilip Jeste, focused their research on three sets of individuals: patients, family members (prior to and during bereavement) and health care providers. This is, as far as the authors can tell, the first time that these three groups have been compared and contrasted in such a way. According to Dr. Jeste:
“Death is obviously a controversial topic. People don’t like to talk about it in detail, but we should. It’s important to speak honestly and transparently about what kind of death each of us would prefer.”
The team’s literature search returned 32 relevant papers. From these sources, the team uncovered 11 core elements to consider when contemplating a good death:
- Preference for a specific dying process
- Religious or spiritual element
- Emotional well-being
- Life completion
- Treatment preferences
- Dignity
- Family
- Quality of life
- Relationship with health care provider
- Life completion
- Other
Across all three of the groups being studied, the categories considered most important were preferences for a specific dying process (94% of all reports), being pain-free (81%) and emotional well-being (64%).
However, certain discrepancies between the groups came to light. For instance, spirituality and religiosity were deemed more important by patients than family members – 65% compared with 50%, respectively.
Family members were more likely to put emphasis on life completion (80%), quality of life (70%) and dignity (70%). Meanwhile, health care professionals tended to occupy the middle ground between the patients and family members.
The future of death
First author Emily Meier confirms the gist of these findings from her personal experience as a psychologist at Moores Cancer Center, UC-San Diego Health:
“Clinically, we often see a difference between what patients, family members and health care providers value as most important near the end of life.”
Meier goes on to say that “ultimately, existential and other psychosocial concerns may be prevalent among patients, and this serves as a reminder that we must ask about all facets of care that are essential at the end of life.”
Dr. Jeste sums up the conclusions to be drawn from the investigation: “ask the patient.”
Although the topic can be uncomfortable for the patient, or, indeed, the family, it is essential to voice concerns and desires and listen to the patient’s wishes. Dr. Jeste hopes that in the future “it may be possible to develop formal rating scales and protocols that will prompt greater discussion and better outcomes. You can make it possible to have a good death by talking about it sometime before.”
Death is certainly not a topic that will be disappearing any time soon. The more open and frank everyone involved can be, the smoother the process will surely become.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
Writer Tim Newman’s blog post is reporting on the conclusions of an article in The American Journal of Geriatric Psychiatry by six well-published researchers entitled “Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.” It has provoked considerable controversy and discussion because of its conclusion that there seems to be no generally accepted definition of what is a “Good Death.”
It states, “There is little agreement about what constitutes good death or successful dying. The authors conducted a literature search for published, English-language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of a good death. Stakeholders in these articles included patients, pre-bereaved and bereaved family members, and healthcare providers … Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint — the patient’s”.
The original article can be found at https://www.ajgponline.org/article/S1064-7481(16)00138-X/fulltext.
Are these elements listed in order of importance? I consult with people at the end of their life, and “dying with dignity” is typically at the top of the list for patients and families. In my experience as a 20-year hospice volunteer sitting vigil at the bedside of the dying, many of the elements on the list dovetail into each other when death is in the room. I don’t see “free from pain” on the list, yet it’s mentioned in 81% of all reports, and for people I consult, it goes hand-in-hand with dying with dignity. “Preference for a specific dying process” and “Treatment preferences” can be summed up as “Choice at EOL.” “Life completion” is #4 and #10; is this a typo? “Relationship with health care provider” is on the list, yet from my experience, people on their deathbeds aren’t concerned that they had a good relationship with their doctor. I’m glad we are talking about death, good and bad, but I question the “32 relevant papers” at the heart of this study and the findings. Who are the authors of the papers and who are the researchers, and what is their experience with death and dying outside of reviewing the 32 papers? I think more study needs to be done on this study. I’m reminded of a quote, “The best death is one that happens to someone else.”