“In this world nothing can be said to be certain, except death and taxes.” Wrote Benjamin Franklin in a letter to Jean-Baptiste Leroy, 1789. Despite our amazing advancement in medicine since Franklin’s time it is still not well known how and what constitutes "a good death". We naturally tend to focus a lot of our lives on living a good life but give very little, if any, serious consideration or instruction for how we would like to die. At what level of illness and incapacitation do we wish for our carers not to revive us or keep us alive on life support? What dignity consideration would we really want those we love to observe and consider in supervising our care?
"There is little agreement about what constitutes good death or successful dying," say senior author Dilip Jeste, MD, and colleagues from the University of California, San Diego School of Medicine.
It is difficult for Clinicians because their job is to sustain life and enhance life. It is difficult for family members who want to keep loved ones alive and it is particularly difficult for the dying who may want to die in a very different way to that being pushed onto them by family and clinicians.
Dr Jeste believes that a lot needs to be addressed and individualized, beyond the somewhat standard topics of advanced directives and organ donations. "We talk about personalized medicine, we should also talk about personalized death," he said. There are many theoretical reports from the fields such as psychology, theology, and sociology on what a good death should be like, he explained.
But his research team sought something else. "We wanted empirical data," Dr Jeste said.
They also wanted to include the perspectives of healthcare providers (HCPs), patients, and families — which is novel because the research on this question has never sought to include all three "stakeholder" groups in one study.
The team identified 11 "core themes" of a good death: preferences for a specific dying process (such as dying during sleep and having advanced directives in place), pain-free status, religiosity/spirituality, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with HCP, and "other."
They found that there was some consistency among HCPs, patients, and families in their assertions/perceptions of a good death.
The top three core themes in all stakeholder groups were preferences for dying process (94%), pain-free status (81%), and emotional well-being (64%). "Everyone agrees that it is important to make preferences for the dying process known, such as where you want to die, and everyone wants it to be pain-free," Dr Jeste explained.
But after that, determining what is a good death was less uniform among the stakeholders. Thus, discrepancies among the groups were noted in the core themes.
Perhaps not surprisingly, families and patients did not see eye to eye on all matters.
Specifically, some core themes were rated higher by families than by patients, such as life completion (80% vs 55%), quality of life (70% vs 35%), dignity (70% vs 55%), and the presence of family (70% vs 55%).
A relationship with HCPs was the least important specific theme for all three stakeholder groups.
- Medscape Medical News, Excerpts Nick Mulcahy April 06, 2016