Sunday, June 02, 2019

Sensible advice about the inevitable, gently delivered

When you reach your seventies, you notice that more people in your life are dying, more immediately. (If you are a San Franciscan, you may have experienced this in the 1980s-90s in a much younger cohort during the height of the HIV crisis, but that's not what I'm talking about.) We all go eventually, but eventually seems to have eased closer.

I'm feeling pretty okay, if a little battered, but seeing friends go inspired me to read The Art of Dying Well: A Practical Guide to a Good End of Life by local journalist Katy Butler. My friend Ronni Bennett, who writes on aging and is recounting the course of her terminal cancer, says she's been inundated with this kind of book. She's had enough. No more. But I had never read one, so I figured I should. I remembered Butler as a smart reporter thirty years ago writing the consumer section for the old Bay Guardian. She still seems a smart, reliable guide -- I would recommend this book for reams of practical tips for living the last stages of life with as much dignity and spiritual equilibrium as any of us may be fortunate to experience.

Butler describes the book's project like this:

In developed countries few people die of disease in the first half of life. Most early deaths result from accidents, violence, drug overdoses, and suicide. Cancer becomes a major cause of death in the mid-forties and continues to climb through the fifties and sixties. Deaths from heart disease rise in the sixties and seventies, from lung disease in the eighties, and from dementia in the nineties. All cause physical suffering long before they kill, and all are profoundly shaped by how you live. .. .before you must accept the things you cannot change, you can seize the time to prepare for what's ahead, and change the things you can.

Since we don't want to think about it, some of her suggestions may seem all too mundane -- but we are all tempted to put them off or put the thought aside. Here are a few of her suggestions, all direct quotes unless otherwise noted.
  • If your primary care doctor is older than you are, consider finding someone who won't retire before you die and has an office close by. (The same goes for dentists, hairdressers, and car mechanics: a twenty mile drive that is easy today may be harder tomorrow.)
  • If your love of solitude has deepened into isolation, or you are cocooning within a couple, you might consider making a conscious effort to befriend or mentor younger people, especially neighbors. ... Courtesy, neighborliness, and exchanges of favors are pleasant amenities earlier in life. For older people who want to stay in their own homes, they are survival skills. ... in later life, interdependence is well worth worth cultivating.
  • Most people have already been repeatedly urged to fill out [medical and legal advance directives.] And 70 percent of us haven't. Perhaps it might help to think of an advance directive as not just a piece of intimidating paperwork, but as an act of spiritual maturity.
  • A doctor who agrees to end an unwanted treatment is not violating the Hippocratic oath. She is honoring your autonomy.
  • Go ahead and ask. Make sure you understand the trajectory of your illness if it follows its usual course. ... Ask not only about length of life, but about how you will feel and function, and how proposed treatments may affect your well-being.
  • Preparing the family ... It takes time for people to absorb the notion that you will die someday, and the unprepared can wreak havoc at the end of life. Keep talking until everyone accepts the truth.
  • Don't let the business of medicine eclipse the business of living. Spend your limited energy and time on things that matter to you. ... You have not obligation to create a voluminous medical history or to monitor a condition that can't be cured.
  • It may help you retain your agency and your moral authority if you understand that financial incentives, hidden from your view, promote overtreatment. ... Few people with cancer know, for instance, that oncologists get more than half their revenue from markups (in 2017, of 4.3 percent) that they are allowed to add to the price of the chemotherapy drugs they prescribe and administer. ... This peculiar system underpays oncologists for making time for difficult conversations ...
  • When I first began this book, I expected to enthusiastically recommend hospice at home for everyone. I still think it's the best option for those who want to die at home and the money for hired caregiving or a "tribe" to look after them. But ... I've realized that the current gaps in hospice services put a good home death out of reach of many people.
  • Nearly a quarter of us will die in a nursing home or similar facility -- often in a shared room with someone in the next bed. ... If someone you love is dying in a nursing home, ask for a temporary private room. (You may not prevail, but it never hurts to ask.)
  • At a certain point, let go. Sometimes a hospital team will refuse to stop treatment, and sometimes family members will disagree with each other. Accept the things you cannot change. Act in a way that will leave you with the fewest regrets, and allow the one you love to die in peace.
It's in the nature of a book on this topic that it overemphasizes how much autonomy and agency any of us will have in our inevitable demise. Having the process go our way is just not how death will come for most of us. Sure, there are sensible things we can do to make the prospect of dying seem a little easier, but ultimately we are powerless in death. That's the reality.

So all the preparations for decline in aging, and the criticism of how poorly the medical system treats the dying, and descriptions of how our culture disables us from contemplating our certain demise, can only go so far. Butler knows that and has written a book that both recognizes its own limits and still tries to assist readers to engage with the uncomfortable truth. Boldly done!

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