Being Mortal: Medicine and What Matters in the End Paperback – September 1, 2015

Doctor & public intellectual Atul Gawande’s 2014 book Being Mortal: Medicine and What Matters in the End basically deserves all the praise it receives. Although it is more about modern aging then about death per se, it certainly fit my mood at the moment. My father, a brain cancer patient in his mid-60s, has been given a push along on this path, so it was still helpful to me to think about aging and decline more generally (significant decline prior to death will happen even in most best-case scenarios — and anyways you can’t know in advance if it really won’t).Being Mortal essentially provides a long, thoughtful, multi-faceted, historically-grounded complaint about the medicalization of aging and death, from someone who really knows and cares. Older adults may become less capable of caring for themselves in various ways, but for the most part they still want the things they always wanted: autonomy in their schedules and surroundings, community, privacy, a specific and concrete reason to get up in the morning. It’s a hell of a demand, to ask people to adjust to completely new surroundings and routines when they’ve never been older and/or sicker.Institutions like hospitals and nursing homes are sort of good at providing some things (specific instances of treatment) and terrible at providing others (emotional warmth, exceptions to the rules, etc). The “assisted living” concept has an interesting history (read it in the book!). Unfortunately, by now assisted living has become a watered-down way station between hospital and nursing home, rather than remaining a bastion of alternative values in elder care as originally conceived.Indeed, the logic of institutions is largely inexorable. If providing meaning (or a lifestyle ripe for it) cannot be measured and incentivized, it will not be reliably or scalably produced.Admittedly, Being Mortal raises more questions than it provides answers. Everyone loves a good news story about kindergarteners who visit nursing homes. But are they changing diapers? Is there really any feasible model for caring for a rapidly aging population other than institutions? And how are you supposed to reward institutions for preserving meaning (an inherently individual task) even while they do the things that institutions are meant to do – get a lot of services provided quickly/reliably in a standardized fashion?No individual person can change the system anyways, but it does seem that (even within the system we’ve got) people are making some crap decisions. Ok, so people are valuing the wrong things – namely, safety over autonomy and the “lottery ticket” of survival/recovery over a better death, sooner. You’re someone who wants to value the right things. So what do you do?You have to do your own research and ask doctors hard questions, because they don’t really like facing imminent death either. You have to broaden your imagination about what acceptable living arrangements for an older person might look like.For instance, maybe you have to accept that your loved one might not get medicine exactly on time or the diet just as the doctor prescribed, because he’s going to sleep in his own bed and raid his own fridge instead. But maybe people don’t want to do those things. Then what?That brings us to my main quibble with Being Mortal: Gawande waffles a bit between what people do value and what they should value. It’s so tempting to talk a big game about what “matters.” But if something really matters, why don’t people choose it? Don’t lots of different things matter? And how could it ever be anything less than very difficult to switch from life mode (focus on safety and the long-term) to end-of-life mode?Perhaps Gawande ought to have sought out some different examples of these values in action. It’s not too hard to imagine a terminal patient forgoing last-ditch treatment, even if it’s not what we’d choose ourselves. It’s much more difficult to imagine a role model of, for instance, an adult child allowing her parent to live in what are widely considered to be “unsafe” living conditions specifically for the sake of that parent’s broader well-being.I want to see examples of real “free-range” senescence. I’d like to read the account of someone who got a call from the police, who found mom passed out in the yard, or even whose parent died in an accidental house fire or something.Many worst-case scenarios (of elders living unaided) will not come to pass, but some certainly will. Then what? Does that change people’s minds, one way or the other? Like trendy “free-range parenting,” it’s probably just much easier said than done. Does that mean a value is going unrealized, or that the person doesn’t hold it in the first place?Maybe many patients don’t even know what they value the most. That’s fair, and part of what palliative care can help them to define, as it becomes increasingly relevant. But maybe there’s nothing satisfying to uncover. There’s no rule that everyone must necessarily value different components of life in a stable fashion. Some people will have very consistent desires, but others will vacillate (especially as they experience the stages of progressing towards death). If you draw a patient’s attention to the dangers of her living independently, she shudders. But when you tell a sad story about a nursing home, she cringes. Maybe she fights with her adult children about where she should go. Maybe she can’t afford her first choice. But that’s simple interpersonal conflict and lack of resources, not unique to old age.You can’t live both independently and in a nursing home. Something’s got to give, and that totally sucks. Some values will be pursued better, and some values will be pursued worse, and some kind of balance must be reached. Care institutions put a finger on the scale, but they didn’t create the problem.The personal economy of value pursuit is simply tricky, from the day we’re born until the day we die. Gawande knows that there are costs associated to the “old” way of dying – it tends to create autonomy for elders at the expense of the younger generation, especially women sandwiched between their children and parents. Many children (and parents) aren’t happy with this anymore, for a variety of reasons, so they face new sets of options (i.e. tradeoffs). Having access to medicine is a double-edged sword, and like many historically-novel conditions humans aren’t inherently well-equipped to deal with it. There’s no technocratic solution to that. If “dying as we lived” is some kind of standard for how we should go, then maybe alone and medicalized makes some sense right now after all.I don’t really have any caveats in recommending this one, though. Just read it (and then try to forget Gawande’s description of how aging bodies feel in a surgeon’s hands as quickly as possible).Book #3 for read about death dot com

As a hospice worker, this book was amazing. Great read to hear from a medical professional perspective on death and dying. Such and interesting thought and view on how to lead a good life before EOL is here and you have time reflect on the life you had.

Thanks to my son, and his upcoming marriage, now only two weeks away, I have become reacquainted with members of the community I was once a part: the medical one. At one social gathering I was talking with a medical resident who worked in an Emergency Room. I asked him if he had read Abraham Verghese’s The Tennis Partner which is set in nearby El Paso and involves an E.R. Resident and drug addiction. He hadn’t and said he would put it at the top of his reading list. He returned the book recommendation favor by introducing me to another American physician with origins in the Indian subcontinent: Atul Gawande.This work is of particular interest for a couple of reasons: for the better part of a decade, at the commencement of my work in the medical field, I was in the field of geriatrics. And now, the issues of geriatrics, and empathy for “creaky bones” are no longer exclusively the concern with others.Gawande’s central thesis is that one of the most important questions of life – the way that it will end – is being handled quite poorly, with the “default option” being to prolong it, via medical technology. And this prolongation is against the wishes of the vast majority of the patients, as well as their relatives. He commences with a description of a dying patient in literature – Leo Tolstoy’s The Death of Ivan Ilyich (Bantam Classics)). From there, like many a physician, he moves on to various case histories. Notably, a number of these are ones that he has known personally, such as Alice Hobson, the grandmother of his wife-to-be. Hobson, like so many others, has the strongest possible desire to live independently as long as possible: many succeed for impressive periods, but eventually, as Gawande explains about complex mechanical systems, things eventually just “fall apart,” and even our built-in systems of redundancies are insufficient. Help is needed.The author provides case histories of the efforts to provide that help. It is difficult to believe that the first “assisted living” facilities were built only in the 1980’s. Gawande details the work of Karen Brown Wilson in building the first one in Oregon. Another pioneer was Dr. Bill Thomas, a somewhat eccentric Harvard-educated family health physician-farmer who wanted to bring some life, literally, into nursing homes, via pets, other animals, and young kids.Again, and yet again, Gawande raises the issue of the “difficult conversations.” What does the patient actually want? What are the tradeoffs? And when is it time to “let go”? A blunt-spoken nurse asks not how you are feeling, but what is your funeral home preference. The following passage particularly resonated: “We’ve created a multi-trillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”The last chapter is entitled “courage.” Gawande demonstrated that with his frank discussion of the death of his father, who was also a physician, having emigrated from India to Athens, Ohio. He had an unusual and most difficult end-case scenario – a tumor within the spinal column. Even being within the medical field, it is difficult to obtain the care one desires. One physician suggested with treatment he could “…be back on a tennis court this summer.” As Gawande says: “…I was spitting mad that she would dangle that in front of my father.” Gawande would eventually take part of his father’s ashes to the very polluted Ganges River, take the ritualistic three sips of water from the river, and contract Giardia for his efforts.Another form of pollution is largely missing from Gawande’s account: “filthy lucre.” I believe that Gawande overlooks the large financial incentives within the American medical establishment for unnecessarily prolonging life… he mentions the “lottery ticket,” as indicated above, but it really does deserve an entire chapter. And from my father’s medical treatment and death, I realized how that establishment carefully calculated insurance availability for “rehabilitation” at 100 days, and even though he was effectively brain-dead, dangled that same “tennis court” scenario to the family. Sure enough, he had 97 days of “potential.”Overall, an impressive work, and I will be reading other works of this humane, thoughtful and knowledgeable physician. 5-stars.