Last week’s post on the fear of death got quite a discussion going, and I appreciated the perspectives that folks shared on the subject. One interesting issue that people raised involved the circumstances of dying itself – specifically dying within a traditional medical setting where interventions and technology to prolong life abound. It reminds me of the old Woody Allen quote, “I’m not afraid of death. I just don’t want to be there when it happens.”

As a whole we do, indeed, die differently these days compared to our ancestors – certainly Grok and his clan but perhaps even our grandparents/great-grandparents. Science, to its credit, has developed ways to save and even restore quality of life in situations that would’ve been our inevitable demise even a few decades ago. But it’s a different focus than efforts that simply prolong life in a technical sense. That leads me to today’s question: in a decidedly un-Primal medical world, what role can self-determination play in a “desirable” death as it does in a vibrant life?

Years ago I read a book by a German author, Rainer Maria Rilke, that talked about the “good death.”
Far from a romantic description, the narrator recounted in tremendous detail his grandfather’s dying, which had been larger than life itself, a force of nature that exerted its own astonishing power to all who witnessed it.

Those of us who have been with the dying – human or animal – have seen first-hand the magnitude of the experience. I’m thinking here particularly of those situations in which people choose to die – and/or are given the opportunity to die – without the surroundings of medical devices, without the barrage of technology and extreme medicating you find in most hospitals and sometimes in home hospice situations.

I saw an older family member die this way many years ago. She refused drugs – even pain killers. It was her way. We all knew her to be stubborn in life and it was little surprise these were her choices in death. The experience was nothing like Hollywood. The noise, the movement, the duration. People can be in the throes of death for days, even weeks.

By contrast, I’ve seen elderly family or even younger people whose vitality was cut short by accident exist for decades in a vegetative or near-vegetative state because loved ones wanted to continue “life”-prolonging interventions that even doctors advised against.

I think most of us want to envision the ideal death for ourselves (e.g. to die peacefully in our sleep) and on some level assume we’ll be fortunate enough to actually go that way when our time comes. Perhaps that will be our fate. But maybe it won’t. Are there alternatives we can’t bear to imagine? How many of these involve medical intervention – circumstances in which we could have a say if only we’d shared it (and signed it) before we were suddenly unconscious and unable to assert our preferences.

How we die (when given a choice)…it’s such an intimate question we must consider for ourselves. I don’t think it does much to sit in judgment of others around the topic as too often happens. People’s passions get stirred by a larger brouhaha, and they entirely miss the chance for stillness that can genuinely open up the question with any clarity. Better to observe the real facts and then look deeply within our own consciences. What does each of us want at the end of life? How do we even want that “end” defined for ourselves?

If we develop or already have a terminal disease, what interventions are we willing to accept to prolong life? If we’re in an accident or experience an acute event like a major stroke that leaves us in a vegetative state, what medical care do we want to be offered or withheld/withdrawn? Do we trust that people in our families would be able to intuit our real wishes, let alone act from those when faced with shock, grief and other pressures?

And another critical area of questions… What are our assumptions regarding the nature and success of medical interventions? Do these perceptions match what a physician would tell us? What would a doctor choose in these types of instances?

The results of a large, well-known study actually reveal some of these thoughts. In the Johns Hopkins Precursor Study, over 700 physicians responded to a mailing asking for their medical care preferences given dire health circumstances. Their choices might be surprising.

In the instance of irreversible brain damage, most (81%) reported they wanted pain medication to be administered. However, even more than that (90%) said they would not want CPR to be offered. Nearly 90% said they wouldn’t want ventilation or dialysis. Approximately 80% reported they wouldn’t want surgery, invasive testing or a feeding tube. Seventy-five percent said they wouldn’t want blood to save their lives.

A Radiolab interview shared more perspective on these choices, including the personal decisions of one doctor as well as facts about common interventions most of us believe are more effective than they are. Fictional television shows, for example, depict 75% of people revived after CPR, but in reality only 8% of people are still alive a month following CPR intervention. Of those, only 3% return to a “good outcome” with a “meaningful quality of life” as opposed to a vegetative or semi-vegetative state. In the interview, we learn that many doctors carry “no code” medallions that communicate their wish for no significant intervention in terminal or dire irreversible circumstances.

Their perspective on the effects – and effectiveness – of interventions gives pause. No one is arguing that we shouldn’t offer reasonable intervention to people with serious injury or health events when they have a chance of being restored to quality of life. At issue is technologically sustaining a literal threshold of “life” for someone who is already terminally ill or irreversibly incapacitated, unaware and perhaps even unconscious. When someone who is already on the brink of nonexistence begins to slip, what do we do – or accept and not do? As one doctor explained it in the Radiolab interview, “We do a poor job communicating futility to patients.”

Let me be clear, I’m talking about self-determination – as in self. It’s not about legislating other people’s choices. It’s about taking full responsibility for our own – while we still have the chance to.

A few readers mentioned advance directives, and that’s the best tool we have. Advance directive is an umbrella term that offers health care instructions or designates someone (a health care agent) who should make care decisions for you based on previously communicated plans/wishes.

We’re straying into legal waters here, and I make no bones about this being merely blog commentary and not legal advice. Generally speaking, however, with a living will, you can communicate ahead of time what medical care you would like offered, withheld or withdrawn in given medical scenarios. You can authorize, for example, the offering or withholding of everything from CPR to artificially provided foods, intravenous fluids, antibiotics, medications, testing, blood and other procedures/technology. You can also delineate acceptable health states or outcomes of treatment.

Amazingly, you don’t even need a lawyer to create a living will, but you need to consult your state’s requirements and have your document notarized. Likewise, you should also talk with your doctor(s) about your wishes, particularly if you have a diagnosis of concern. You can also ask your doctor about keeping your wishes on file in the clinic records. Certain national registries exist for this purpose as well.

In addition to a living will, experts recommend choosing a surrogate or proxy who you authorize to speak for you in health care matters. There are often instances when a living will may be contested by family members (even with the best planning and prior discussion) or when a situation might not be entirely clear given the language of the living will and the current circumstances. A legally designated agent in an advance directive will be able to speak for you when you are unable to and will have the authority to carry out your wishes.

We put a great deal of thought and effort into the good Primal life we want. We envision a certain level of health and work to sustain it because we want to define our lives a certain way. While it might not be the the most hopeful of considerations, I think the argument can be made for defining your end of life in certain circumstances.

Rilke, the author I mentioned earlier, captured the highly individual and intimate nature of death in a poem from his Book of Hours. He hoped that we might each be given “our own death, the dying that proceeds from each of our lives: the way we loved, the meanings we made, our need.”

That sounds to me like a fitting end to a vital and substantial life. Here’s to a good death…

Thanks for reading today, everyone. Share your thoughts, and have a great end to your week.

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