Near North Palliative Care Network

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:

1. Preference for a specific dying process
2. Religious or spiritual element
3. Emotional well-being
4. Life completion
5. Treatment preferences
6. Dignity
7. Family
8. Quality of life
9. Relationship with health care provider
10. Life completion
11. 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.