Two weeks ago, I spoke to about twenty people at the regular weekly meeting of the Ethical Society of Austin (Texas)*. The topic was the seven choices available to a person who becomes afflicted with dementia. I began by asking what, for them, are the characteristics of a “good death.” In about ten minutes, the group offered the following suggestions:
• peaceful
• painless
• when I decide
• with dignity
• with my loved ones
• with closure
• not prolonged
• completed bucket list
• with appropriate spiritual guidance
• without unfinished business
• with support
• financial affairs in order
• at the place of my choosing
• with my mental capacity
• having chosen my final resting place
• reserving control and agency over my affairs
• with agency over my legacy & remembrance
• knowing and having chosen who will take care of me & my affairs
• with my fears alleviated; i.e., feeling emotionally safe
• having planned ahead (advance directive) with a trusted person/group
None of these preferences/hopes/wishes are out of the ordinary for a group of middle and working class people whose ages range from about 25 to 91. Some of the members had young children, a few were retired, most were still working, a few were Hispanic. The oldest person in the group is coping well with Parkinson’s Disease; that is, he needed the assistance of a walker, but was not otherwise impaired by movement problems as he walked with better posture than I have. His mind was working well. After the meeting he discussed some concerns with me and thanked me for mentioning that levodopa can continue to work throughout the course of Parkinson’s. This was an issue that concerned him and about which he was unclear.
This list of characteristics of a “good death” is representative of every group I have asked to go through this exercise over the last ten years. A few items may be expressed differently, but they are essentially the same from group to group. Often, someone in these groups will mention the desire for palliative care (which may be provided by hospice), but members of the Ethical Society group mentioned a death that is “painless,” “with dignity,” and includes having “fears alleviated and feeling emotionally safe”–all characteristics of care by a good hospice service. “At the place of my choosing,” is more often expressed simply as “at home.” Death at home is widely viewed as important for a good death. Survey data show that it is the choice of about 70% of us, yet only about 30% actually die at home.
Such is the nature of our culture and our medical system. Not long ago, when a friend went to a cardiology appointment, he was rushed to the hospital because the cardiologist found that his heart was rapidly failing. He went into the ICU so that he could be kept alive while his heart was monitored and treatment attempted. When, after five days, the specialists determined there was no medical solution for his weak heart, he was removed from all of the machines that were keeping him alive. He died without regaining consciousness. He wasn’t at home; he was not able to say his goodbyes; his financial affairs were not in order. About the only characteristic of a “good death” found on the list that applied to his death is that his loved ones were with him, though he likely was not aware of that.
The groups that I have talked to about end-of-life issues over the past ten years do not represent a cross-section of the population. They include few minorities and are mostly middle and working class people. Most have health insurance. Many have their own experiences with the deaths of family members. Even more important, they are not averse to talking about death and dying. This common aversion is a limiting factor. We know, for instance, that only about one-third of adults have completed advance directives, which is one measure of a person’s willingness to face death and dying.
In a joint editorial last year by the editors of the Journal of the American Geriatrics Society and the Journal of Age and Aging, the authors argued for abandoning the concept of a “good death.” They believe that the “good death” does not exist because it is individual and “is highly influenced by social relationships and cultural, religious, and historical factors.”
I don’t quarrel with the notion that many of our preferences are influenced broadly by our environment, values, and experiences, which determine what we might consider a “good death.” But that is one reason the concept includes so many features that may be universal among the demographic I have described, as well as among others. There is much agreement about what a “good death” would mean for them, though not all characteristics are accepted by all members of the group. For instance, I broadly agree with the list of characteristics, though I am not concerned with receiving “spiritual guidance,” and I expect (or hope, at least) that I will leave some unfinished business when I die: I have so many plans that there is no way I will complete them all. In fact, part of my idea of a “good death” is to never run out of things I want to do–a book I want to read, a topic about which I want to write, an experience I want to have with friends and loved ones.
I agree that a “good death” will vary among individuals, but I have found there are many characteristics of a “good death” that are embraced by most people who have considered the topic, and which we should seek to assure for everyone. One important aspect of finding a “good death” is having excellent health care for all, so that a full range of end-of-life options is available. Another key aspect is a discussion of the topic with physicians. A Kaiser poll from 2015 found that only 17 percent of those surveyed said they had had such a discussion, though 89 percent believe doctors should engage in such discussions with patients.
If doctors, especially those working with the geriatric population, think that a “good death” is not possible, such a death will not be possible for most people. Having that discussion with family members, health care agents, hospice caregivers, and doctors is necessary for each of us to realize the goal of a “good death.” And it all begins with thinking about, discussing, and writing down in advance directives what we want to happen to us at the end of life.
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* The Ethical Culture movement was started over 140 years ago by Dr. Felix Adler. Ethical Culture came to Austin in 1994, when the Ethical Culture Fellowship of Austin was founded. The name was changed to Ethical Society of Austin (ESOA) in 1999. ESOA is a welcoming humanist community. Members strive to live ethical lives and bring out the best in others, thereby bringing out the best in themselves.
It’s always interesting to reflect on the parallels between birth and death. Birth also used to be much more medicalized–mother given “twilight sleep” in the hospital labor room. As time passed, individual autonomy in formulation of a “birth plan” has become so much more accepted with options such as home birth, midwife/doula attendants, and less OR-like birthing suites. It is my hope that a similar trajectory can apply to empowering individuals to exercise autonomy in planning a “good death.”
I agree with this article on the “good death” and all the suggestions listed. I have been dealing with head & neck cancer -first diagnosis was in 1988 but was in remission – so actively since 2007, and since last year, even more so. It has since metasticized to the lymph nodes and am currently undergoing an immunotherapy treatment since I have refused chemo and radiation. My doctor told me very honestly that death from this is “horrible”. I am in complete agreement with Medical Aid in Dying and am planning to attend the campaign being held in my hometown on 10/26 to listen and sign the petition. I also am a member of FEN since 2007 and am open to all the info. and options available when the time comes that I won’t be able to deal with this anymore.
Another informative and thought-provoking post!
My top priority is having more control over when and how (“at the time of my choosing”) I die than anyone else has.
A lot of the listed qualities strike me as things that we should be striving to attain every day (“affairs in good order”).
I’m going to have to try to track down that joint editorial to see more on how they justify their position. Clearly there are “bad” deaths! And thus “good” ones.