Book #3, read June 2018
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).