Approaches to the end of life


Dhruv Khullar writes about the differing opinions about how to approach the so-called “‘marginal decade’ at the end of our lives, when medicine keeps us alive but our independence and capacities bleed away.” He points out that in 1900, the life expectancy at birth was 47 years. But at that time, one in five children died before the age of 10. Now life expectancy at birth is close to 77. Much of this improvement came about rapidly due to improved sanitation, antibiotics, and vaccines that have reduced infant and child mortality considerably.

But in the last six decades, increases in longevity have slowed, to only about seven years, and are more due to extending the lives of of old people, many of whom are in ill health. In other words, Khullar says, “we are prolonging the time it takes to die.” The goal of compressing mortality, i.e., shortening the gap between the end of a healthy life and death, may be slipping away.

If anything, longer lives now appear to include more difficult years. The “compression of morbidity may be as illusory as immortality,” two demographers, Eileen Crimmins and Hiram Beltrán-Sánchez, wrote in 2010. According to the World Health Organization, the average American can expect just one healthy birthday after the age of sixty-five. (Health spans are greater in countries such as Switzerland, Japan, Panama, Turkey, and Sri Lanka.)

I was puzzled by what the statistic that “the average American can expect just one healthy birthday after the age of sixty-five” meant and the article did not clarify. In searching around, I did find this representation of ‘healthy life expectancy’ (HLE) across the globe that says that the healthy life expectancy at birth for the US is 66.1 years which is what Khullar is probably referring to. But that is different from heathy life expectancy at age 65. The CDC has figures for HLE in the US at age 65..

Life expectancy (LE) (i.e., expected years of life at a given age) is the average remaining years of life a person can expect to live on the basis of the current mortality rates for the population. HLE estimates the equivalent healthy years that a person can expect to live on the basis of the current mortality rates and prevalence distribution of health status in the population.

For both sexes, estimated HLE generally was less in the South than elsewhere in the United States. HLE for males at age 65 years varied from a low of 10.1 years in Mississippi to a high of 15.0 years in Hawaii. HLE for females at age 65 years varied from a low of 11.4 years in Mississippi to a high of 17.3 years in Hawaii. HLE was greater for females than for males in all states, with the difference ranging from 0.7 years in Louisiana to 3.1 years in North Dakota and South Dakota.

What is one to do with this information?

As one gets old, one’s sense of one’s mortality becomes hard to avoid. News of the deaths of elderly family members and friends become common and each one means that a thread in the fabric of one’s life has become severed. But while one hopes that one will live longer, there is the counterbalancing fear that one will become incapacitated or otherwise unable to live the kind of life that is desirable. Ideally, one would like to have good health until one dies. But that is rare and largely outside our control. More often, one experiences physical and cognitive decay until one’s body finally gives out. One can only hope that the gap between the end of a healthy life and death will be short, with enough time to get one’s affairs in order but not so long that the end is drawn out and painful.

There is no doubt that genes play an important role in one’s health and longevity. If one is lucky to have been born with good genes, that is a considerable part of the story. But lifestyle choices also play an important role role and the question is to what extent they are beneficial and should be adopted. There are those like Peter Attia, physician and author of the book Outlive, who think that by taking heroic measures throughout one’s life and adopting a very vigorous regimen, one can not only extend one’s lifespan but also significantly extend the healthy period, and promoting such practices has become a very lucrative industry with hundreds of specialized “longevity clinics”, some charging up to six-figure annual fees.

There is the old joke that getting old is no fun but is better than the alternative. There are those who do not agree and, sadly, it leads them to take their own lives. There are others who will fight that alternative to the end, adopting the view in the poem Do not go gentle into that good night by Dylan Thomas that begins:

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Some experts argue that the benefits for such extreme measures to increase longevity and health are unproven.

Ezekiel Emanuel, an oncologist and a health-policy professor at the University of Pennsylvania, derides Attia as an “American immortal” who overcomplicates straightforward advice. “The idea that you’re going to get another healthy decade of life just by doing the things he says is hocus-pocus,” Emanuel, who served as a special adviser to the Obama Administration, told me. “No one’s got that evidence.” Half an hour of daily exercise clearly improves and extends lives, but it’s hard to prove that Attia’s intensive regimens are much more beneficial. By incessantly preparing for the future, the skeptics say, we mistake a long life for a worthwhile one. and that everyone can benefit from adopting some simple, common sense practices such as exercise, eat healthily, sleep well, nurture relationships.

Not all rage against the dying of the light. They accept that there will be a steady decline in the things that one can do and rather than fight against it, come to terms with it and seek out other benefits of aging.

[Eric Topol, a cardiologist and the director of the Scripps Research Translational Institute] said that some of his patients had read “Outlive” and then asked him for prescriptions. “People see him as the expert, so they are going to try something if he says he’s doing it,” he told me. “His followers aren’t going to be able to detect which recommendations are firmly grounded in evidence.” Meanwhile, training dozens of hours a week might take more time than it will ever tack on; good health could even drag out some terminal illnesses. “Peter’s theory of Medicine 3.0 is that you get this long life where you’re healthy, and then you fall off a cliff,” Topol said. “It would be great if it were true. There isn’t any evidence for it.”

Emanuel, the University of Pennsylvania professor, has said that he wants to live to seventy-five. (He is sixty-six.) “Living a long time is not an end in itself,” he told me over Zoom. “If it becomes the focus of your life . . . that is one of the worst mistakes you can make.” It’s not that we shouldn’t exercise or eat well—but “everyone goes through a decline,” Emanuel said. “Spending your life worried about all these tiny things is a waste of time.”

When one has good health, one is more eager to extend it as much as possible, unrealistic as it may be, since life still seems to offer so much. In some ways, going through decline may be part of the preparation for death.

Leon Kass, who served as the chair of the President’s Council on Bioethics under George W. Bush, has written that losing our capacities might be a kind of prerequisite to accepting our mortality: maybe the slowing of body and mind is what makes death tolerable. He quotes Michel de Montaigne, the sixteenth-century essayist. “Inasmuch as I no longer cling so hard to the good things of life when I begin to lose the use and pleasure of them, I come to view death with much less frightened eyes,” Montaigne wrote. “When we are led by Nature’s hand down a gentle and virtually imperceptible slope, bit by bit, one step at a time, she rolls us into this wretched state and makes us familiar with it.”

I thought about a curious body of psychological research, which suggests that as we age and lose our capacities we tend to grow more content, not less. This finding clashes with popular conceptions of getting older, but seems to hold across continents, cultures, and eras. “I can’t do everything I used to,” a family friend, who is in his eighties and has been married for sixty years, recently told me. “But I wouldn’t say I’m any less happy than I was before.” Lost pleasures, he said, could sometimes be replaced: rounds of golf gave way to brisk walks, and when walking became difficult he spent more time talking to his children and grandchildren. As we grasp that our days are limited, we seem to abdicate our need for control; we may try to close the gap between what we want and what we have. Healthy aging seems to require a shift in mind-set as much as a shift in muscle mass.

Even Attia acknowledges that striking a balance between extreme measures to stay healthy and complete passivity seems to be the key to a good life and death.

Attia tends to argue that individual choices matter not because they are all-powerful but because they are the power that we have. He compares healthy aging to investing in retirement: contribute what you can, whether it’s a daily walk or an extra half hour of sleep, and the benefits may compound over time. “If I’m being brutally honest, I think some people are looking for a reason not to do it because it’s hard,” he said.

He acknowledged that health, like wealth, is unequally distributed; indeed, one of the most powerful longevity “medicines” is money, which can buy people less stress, better education, safer neighborhoods, and higher-quality medical care. For this reason, Emanuel argues that doctors should focus less on “getting rich people from ninety to a hundred” than on improving health in communities where people die young.

The essayist Montaigne quoted above also said that “to study philosophy is to learn to die”. That seems grim but his point was that we need to face our mortality head on without fear.

Comments

  1. anat says

    I wish I had a better understanding of what the definition of healthy life expectancy included. One can have a serious medical condition and recover from it with very little impact on one’s eventual daily life -- is such a person considered to be living healthy years or are this person’s healthy years over? What about being diagnosed with a chronic condition that is easily managed and which currently has little effect? For instance, my father had a heart attack in his late 50s, then quit smoking and became healthier than he was prior to his heart attack. Now in his eighties he is suffering from a debilitating condition that has so far defied diagnosis. From my POV he had over 25 healthy years between heart attack and his current ailment. But do these years count for the purpose of this analysis?

    Myself, I am the survivor of two cancers. Each required a while of treatment, but now the only effect they have on me is that I take routine screenings seriously. Am I living healthy years or did the first cancer take me out of the statistics? My subjective experience is that I am very healthy.

    It is good to know what one’s serious risks are. Many of the ‘big’ chronic conditions can be prevented or very significantly delayed by lifestyle, and even people who were already diagnosed with them can do much to prevent recurrences of acute events or to improve the level of health they experience most of the time. Living with less pain and more functionality is good. The amount of effort that is worth the while to exert in order to achieve that will vary individually, and for an individual will depend, among other things, on what they expect their ‘improved’ healthy life to consist of -- what they see as a source of meaning to their own life.

  2. Katydid says

    Both my parents died in their 80s after a decade or more of very-expensive and futile medical care. It would take all day to describe the countless conditions and issues that arose--to sum it up, both had dementia and a host of physical issues needing round-the-clock care, and were miserable with it to boot. As Baby Boomers, it was their god-given right to a life of permanent ease and joy and they were resentful that they didn’t have it.

    As for me, I’m definitely in favor of quality years over quantity years.

  3. Just an Organic Regular Expression says

    As an 82yo in reasonable health I am pushing hard on the actuarial limits. Recently the residents of the senior facility where I live sponsored a lecture series on end of life issues. To me the major takeaway was that in a medical crisis, when we are personally unable to communicate our wishes, medical people default to what they are trained to do: preserve life at all costs. Too often the result of CPR is a person intubated and held in an extended twilight state of what is only technically life.

    That is often not what an older person would prefer. It is very important to make your wishes clearly known, both to your closest relatives who will be speaking for you to medical people, and in documents that vary state by state: advanced health care directives, living wills, etc., which you file with your primary physician. People often defer these discussions and paperwork with sad results.

  4. jenorafeuer says

    One of my friends from university chose MAID (Medically Assisted Induced Dying) a few years ago, just pre-pandemic. He had cancer that had long since metastasized and was no longer being held in check by the chemo, and was also paralyzed from the waist down. He’d also recently recovered from an infection that had left him delirious for multiple days, and the laws that allow for medically assisted suicide in Canada require that one is of sound mind at the time of explicitly requesting it, so he knew that if he became delirious again he would be stuck and possibly end up like some of the other people in the hospice ward that were quite clearly never recovering ever again.

    Author Terry Pratchett fairly famously talked about ending his own life similarly, though he ended up dying before following through with it. To someone who lived by his words, the thought of losing them to Alzheimer’s was rather difficult to handle. A number of his fans noted that you could tell just from his last few books that his brain was no longer capable of handling the same complexities he used to write regularly. He wanted to leave this world on his own terms. (Those terms also somewhat famously involved taking the hard drive from his computer with all his unfinished work and driving a steamroller over it, in what was a pretty blatant poke in the eye at Christopher Tolkien.)

    It’s not a decision for everyone, and in Canada the boundaries and requirements for this are under some renewed debate; there’s a difficult balancing act between making it too easy and having people die due to decisions they might have had a chance to regret later (or due to decisions pushed by other people for their own reasons), or making it too difficult and ending up with situations like my friend’s where someone could end up being no longer capable of giving valid consent and thus stuck still technically alive but with nothing really going on.

  5. Rob Grigjanis says

    In her last ten years or so, my mum had worsening dementia, and was increasingly frail, eventually requiring 24/7 care (mostly from me). In the last couple of months, she seemed* to have a recurrence of much earlier bladder cancer. External observers may have seen her quality of life as poor, but she seemed to take real joy from being alive until her last week or so. I know that can vary hugely between individuals. In the end, she just quietly stopped breathing in her youngest daughter’s arms, about a month ago. I miss her terribly.

    *She long ago insisted she wanted no more tests or treatment done.

  6. Mano Singham says

    Rob,

    I am so sorry to hear about the loss of your mother.

    But she seems to have died like a philosopher, in her own way and on her own terms.

  7. birgerjohansson says

    While humans are long-lived, animals that suffer very little predation as adults -- such as bowhead whales -- can live (and live healthily) much longer.
    I hope AI comparisions of genomes will eventually (alas, long after our deaths) identify the genes that help bowhead whales self-repair and live for two centuries. They seem to have sorted out the cancer threat, too, otherwise their immense bodies would produce tumors. With the genes identified, pharmaceutical solutions can be found.
    There is also the issue early mammals during the mesozoic* lost the genes for repair and slow ageing that can be found in other vertebrates.

    *Brief, nocturnal lives avoiding things like Velociraptor meant long-life genes were not selected for.
    .
    I keep reading up on medical research -- old age has made me more afraid of death instead of more philosophical.

  8. John Morales says

    We’re all different, there is no one size that fits all.

    I think the best thing would be to have options and self-determination.

    But, yes, dementia. The main complicating factor on an ethical sense, if not in law.

    Organic Regular Expression @3, I think, got it right.

    If one succumbs to dementia but has no living will, then they are at the mercy of their relatives and of the system.

    But, for sure, it should not be illegal for someone who is compos mentis and is fully informed to terminate their life as they see fit; sensible threshold criteria as a guardrail (e.g. chronic suffering, lack of prospect of recovery) are quite acceptable to me. Erring on the side of caution, no worries.

    (Forbidding self-determination, that’s a worry)

  9. Tethys says

    My condolences to Rob Grigjanis. Filial duty is not an easy responsibility, especially when they require 24/7 attention. You’re a good son.

    ———

    I’m starting a similar process of decrepitude with my 81 year old Mother, and it’s been very challenging in many unexpected ways.

    As someone whose family members routinely live into their nineties I’m giving that claim about 75 major side eye. Yes, my Nana was in a wheelchair for the last decade of her life, but she absolutely preferred being alive and living to see her 100th birthday right up until the point that she decided to stop receiving hemodialysis treatment for her heart and kidney failure.

    I hope to go like all my other Grandparents, and to simply have a massive stroke and drop dead while going about my day.

  10. EigenSprocketUK says

    I found Our World in Data to have fascinating charts.
    For example, there is a chart for “remaining life expectancy at different ages” for various countries, also a couple of charts for “annual death rate / 1000 people by age group”.

    It doesn’t clarify where co-morbidities come in to the balance, but it does show that an 70–75 y.o. still should at least plan for several years to come (healthy and otherwise).

  11. John Morales says

    When it comes to senescence, one can at least respect that it took a lifetime to get there.

    A good innings, regardless of how one gets out, I reckon. Can hardly complain about that.

    Comes to all of us.

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