Sunday, November 29, 2015

How Long Should We Live?

Spending Thanksgiving with my two sons/daughters-in-law and five grandchildren made me more aware than usual about the generations, the passage of time, and mortality. Those musings led me to look at a post I'd written for the (now discontinued) Over 65 blog. I'm republishing that post followed by some further reflections:
Why I Hope Not to Die at 75
By James Sabin
I feel uniquely qualified to comment on Zeke Emanuel’s much-discussed article “Why I Hope to Die at 75.” I’m smack in the middle of the year he hopes will be his last. In addition, many years ago I wrote a book about health care organizational ethics with him (and Steven Pearson). I loved working with Zeke and admire the creative work he’s done on medical ethics and health policy.
Zeke says, correctly, that with limited exceptions, as we pass beyond 75 we typically lose physical and mental capacities, with the result, in his view, that “by 75, creativity, originality, and productivity are pretty much gone for the vast, vast majority of us, resulting in diminished productivity.” Although Zeke recognizes that we “accommodate [to] our physical and mental limitations” by diminishing our expectations and “restrict[ing] activities and projects, to ensure we can fulfill them,” at 57, he is horrified by the vision of diminution.
In Zeke’s view, to be remembered “framed not by our vivacity but by our frailty is the ultimate tragedy.” If a patient said this to me, I’d respond, “We can understand that losing vivacity and becoming frail is sad, but how can we understand why being remembered that way is ‘the ultimate tragedy’ for you?” Over the years, with patients who didn’t want to live beyond a particular age, we virtually always found highly personal fears underlying their picture of what the age meant.
We 75ers know from experience that Zeke has the facts right. I’ve experienced most of the changes he attributes to the age. But as is the case even for people who experience vastly more severe challenges than diminished aerobic capacity and declining productivity, most of us ferret out opportunities to contribute to the world and derive satisfaction. Many posts on Over 65 speak to this effort.
Zeke’s facts may be right, but what about the values he espouses? If Zeke were 17 his article would read as the exuberant outpourings of a brilliant adolescent. But he’s not 17 – he’s one of the leading bioethicists and policy experts in the world. As a result, rather than being understood for what he’s doing – presenting an unflattering view of himself in order to provoke thought in others, the Twitterati see him as telling others what values they should adopt. Even more foolishly, some claim that his highly idiosyncratic perspective, which I believe he will ultimately come to see as misguided, proves the truth of the “death panel” lie.
Many readers of Over 65 will agree with Zeke’s critique of American culture as too focused on the duration of life and too inattentive to the purposes of our lives. He calls this cultural type the “American Immortal.” But very few are likely to emulate his prediction that even if he is in excellent health at 75 he will decline all medical interventions except for relief of pain. No flu shots. No antibiotics for pneumonia.
If that view holds for the next 18 years, which I doubt will happen, I hope that when Zeke declines a flu shot or an antibiotic for a treatable infection his physician will be guided by “Four Models of the physician-patient relationship,” an article Zeke wrote in 1992 with his then-wife Linda. Here’s how they described the “deliberative model”:
“The aim of the physician-patient interaction [under the deliberative model] is to help the patient determine and choose the best health-related values that can be realized in the clinical situation . . . The physician’s objectives include suggesting why certain health-related values are more worthy and should be aspired to . . .” (emphasis added)
The values Zeke anticipates applying are not “the best health-related values” for a healthy 75 year old. It is not “worthy” to invite healthy life to end sooner than need be out of fear that we will be remembered as a frail elder, not as a vigorous youngster. That would be neurosis, not wisdom.
I mentioned above that I had the privilege of working on a project and writing a book with Zeke. I understood him to be a warm-hearted person and a gifted teacher who evinced respect and affection for a wide range of humanity quite independently of whether they were “creative” and “productive.” I believe the article he is being roundly attacked for is actually a gift. Zeke wants us to think seriously about what we value in life. By presenting views that many have found repugnant, and that I see as understandable but wrong, he’s achieving his purpose of provoking thought and discussion.
Zeke gives himself an out in the final paragraph of his long (5,000 words) article: “I retain the right to change my mind and offer a vigorous and reasoned defense of living as long as possible.” (I trust by that he means “as long as possible” in a state in which he can appreciate life and respond to others in a meaningful way.) I’m prepared to bet that when Zeke turns 75 he will no longer regard youthful vigor and stunning productivity as the only values worth living for. If I’m alive, I’ll look forward to his contributions to Over 65 when he hits that birthday in 18 years!

This morning the New York Times carried an article on "Mothering my Dying Friend." The author - Catherine Newman - presents a powerful picture of what it was like to care for her best friend who was dying of ovarian cancer at 47. It's an excellent piece. If you want to read about the experience of (a) caring or (b) dying, follow the link.

I focused on (b). To me, Zeke Emanuel's wish to die at 75 in order to avoid the waning of intellectual and physical energy, seems more like a younger man's phobia about vulnerability than wise thinking about life. But I agree with Zeke that it's important for us to think about how we want to handle aging, illness and death before trouble hits the fan.

I know from many conversations with friends in their 70s and 80s that a majority wish for a more rapid demise than Catherine Newman's friend experienced. Physician assisted suicide is the most talked about approach to hastening death, but VSED, ("voluntary stopping eating and drinking") is a more common practice. When we're close to the end of our lives, we typically experience less hunger and thirst. While some clinicians and facilities are reluctant to honor a patient's decision to stop eating and drinking, there's a strong emerging trend in law and ethics to honor VSED when chosen by competent adults, as evidenced by the strong recommendation made in a recent review of literature on the topic:
...we think that the issue of suicide, euthanasia and hastened death should not be regarded as a last resort option. They have to be discussed early with the affected persons and not in the last days of life. If options of prematurely ending one’s life are known beforehand, VSED is an expression of autonomy and control, and therefore a sign of the patient’s competence. 
Thinking about mortality over this holiday weekend led me to add a codicil to my advance directive. In an aging society, clinicians, health care organizations, and the wider public, need to reflect of values and policies. I'll be writing more about the topic in the future.

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