Remaining The Writer of Our Own Story At Life’s End

GawandeIn Being Mortal: Medicine and What Matters in the End, Atul Gawande draws attention to an issue that most of us try to avoid: how we will live as our health declines.

As Gawande points out, there is a “prevailing fantasy [] that we can be ageless,” that, in time, medicine can fix what is wrong with us. It’s the same quest for miracles that, as I mentioned in my post on Anthony Doerr’s The Shell Collector, “fuels a $30 billion supplement industry that touts ‘cure all’ claims that are often based more on fiction than fact.”

The prospect of aging and dying is scary. Gawande, a general surgeon, doesn’t sugarcoat it as he lays out the lessons he has learned from his personal and professional experiences. He describes how our bodies fall apart, the accompanying loss of independence, and the double-edged sword of medical treatment in the final stages of life. There are stories from Gawande’s family and from his patients, including a 34-year-old woman with lung cancer and a nonagenarian who, as Gawande quotes in a much-needed moment of comic relief, would “vote for Dracula if he said he was a Democrat.”

I actually laughed a handful times while reading this book, which was otherwise a relentlessly bleak portrayal of how our society handles the needs of our aging population and the terminally ill. Not only are so many of our nursing homes and so-called assisted living facilities “depressingly penitentiary,” as Gawande says, but the medical establishment tasked with guiding us through the final years of our lives is woefully unprepared for the job. The percentage of the population over age 65 has grown (from 2% in 1790 to 14% today), while applications to adult primary care training programs have dropped and applications to higher-paying fields, like plastic surgery, have risen.

As a society, we have prioritized looking young over aging well.

However, Gawande notes signs of progress, indicators that more of us are now able to “remain the writer of our own story” to the very end. More people are dying at home or using hospice care, and there have been increased efforts to address the isolating nature of institutional care. As he concludes, “We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm.”

So, what should this new norm look like? Does it include assisted suicide/death with dignity, which Gawande discusses only briefly in the book? What role does our government play in providing adequate legal, social, and economic support for those of us who are dying and our formal and informal caregivers?

One of the facts Gawande raised about caregivers particularly stood out to me:

Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive.

Thanks to the persistent stereotype of women as homemakers, the primary alternative to institutionalized care has been for women to care for our aging relatives. Without adequate support, so many struggle to work and raise children while also providing the type of care that enables our aging loved ones to write the ending of their life stories (PDF).

When imagining our “new norm,” let’s aim for one that allows us to end our lives on our own terms while also allowing our caregivers to continue to live theirs.

*See also To Sleep, Perchance to Dream (If You’re Unlucky?) (“There’s no better time of year to read a book about death—and America’s stubborn unpreparedness to care for its aging population— than fall.”)

**The pictures below were taken at Chanticleer, where I read the first 30% of this book.

Another Scene from ChanticleerChanticleer More Scenes Oct 2014

15 thoughts on “Remaining The Writer of Our Own Story At Life’s End

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  3. Good article AMB. So many health services the world over can’t cope generally as a direct result of medical advances. In the past, you got ill, you died. Now people demand that they get the best treatment and drugs, live for ever. Inevitably people grow older because of better treatments but this only delays the denouement. I wonder how the landscape will have changed – if at all – in 200 years?

  4. Literary Feline

    It’s such an important topic, the subject of aging and dying. My maternal grandmother had dementia during the last 10 years of her life. It was very difficult to see her transformation from a strong independent woman to a meek and weak completely dependent woman. I was a teenager/young adult, in high school and through my college years, during that time and I saw how my mom and her brothers struggled. My father wouldn’t tolerate my grandmother living under his roof and so my grandmother, after staying for a short time with one of my uncles and his wife, ended up in a home convalescent home and then later a different kind of care home . I hated it. I can’t imagine she liked it. She went downhill fast once there. My paternal grandmother is currently in a residential care facility (all her family lives far away and she refused to leave the town she lived in all her life) and is doing amazingly better than she was those last few years when she lived independently. It’s wonderful to see. She’s active and healthy. It’s obvious the type of care and focus of those who work in those similar but different environments (where my grandmothers lived) makes a big difference.

    As for aging, my dad declined so quickly in some respects. The doctors were never able to figure out what was causing all his health problems. It almost seemed, if you looked at the signs of death, that he began dying a year or two before his actual death. It’s heartbreaking to think about. He died at home of a heart attack, quite suddenly. Just the way he wanted to go. Too soon for the rest of us. I don’t know what it will be like for my mother. She’s talking of moving down my way (I live over 400 miles from her), and I imagine she may eventually end up living with us. My brother lives near her now, but, as your book mentioned, I am the daughter, and, for us, it seems more natural that I will take care of my mother. I am not sure about my in-laws. My brother-in-law who still lives with his parents will likely take that role with them. My mother-in-law has Multiple Sclerosis, and so I know she will need assistance as her illness gets worse.

    My daughter is the only daughter, and I would hate to burden her with my care. I don’t know. I try not to think too much about my getting old–although it’s hard not too. I’ve already noticed changes in my body that I know are a sign of age. Heck, I’m having surgery soon for a condition that occurs in older women more often than the young–and afterward I will be even more in the “older” camp. I may have a three year old daughter, but I had her late in my life. Anyway, I hope I won’t need assistance later in life or else I want to go live in the facility my grandmother is in.

    I am not sure where I stand on euthanasia. I have mixed feelings about it. This is in terms of myself. I wouldn’t presume to know what it is best for someone else.

    1. Thank you for sharing, Wendy. It’s amazing how something we will all experience–the decline and eventual death of our loved ones and of ourselves–varies so much from person to person and from family to family. My mother is Sri Lankan and raised us with a multi-generational approach to caring for the elderly and terminally ill. I have two sisters, and all three of us live very close to our parents. I am actually walking distance from them. I don’t know what will happen when their health declines–thankfully, we haven’t crossed that bridge yet–but we will take care of them, just as we’ll take care of each other if one of us becomes ill. My mother-in-law has mentioned distant plans to go to a nursing home someday–she doesn’t want to be a burden–but we’ll have to see how my in-laws feel about it when the time actually comes. Gawande portrays nursing homes and assisted living facilities negatively, but he also discusses how good some of them can be. I’m glad to hear that your paternal grandmother is living in one that meets her needs.

      Good luck with your surgery. I know how jarring it is to notice signs of age, to suddenly realize that I’m not actually 28 anymore.

  5. As long as we value money more than people, I don’t know how nursing homes can change. I once visited an acquaintance in a nursing home after she had heart surgery. The noise from the street was deafening and contrary to healing. I asked the head administrator if she had thought of upgrading the old windows to improve the comfort of the patients. I even offered to write a letter requesting the improvement. I was asked not to make trouble. My dear friend is from Austria; her mother spent her last years in a convent on beautiful grounds receiving great care for free.

    1. Sadly, I agree with you. My fear is that the best nursing homes and assisted living facilities–the ones that foster residents’ independence and focus on quality of life–will be too expensive for most people. If I remember correctly, Gawande has an example of an excellent assisted living facility (I’m not sure if that’s the correct label for it) for middle-income residents, but I wonder if that will always be the exception, not the norm. I am familiar with one nursing home chain (because I represented an employee in a discrimination case), and I will say that I would never, ever place one of my loved ones there. It was a “safe” place, but an awful environment, one where residents were charged a premium just to receive the care they deserved.

  6. “As a society, we have prioritized looking young over aging well.” Wow. That is sad but very true.

    I feel incredibly blessed to live close to my grandmother, parents, and other family members as they get older. I know that is not the case for everyone but my sisters and I will be able to help them when they need it.

    1. Yes, it is sad. The parts of Gawande’s book that shocked me the most were about how unprepared our medical establishment is to meet the needs of our aging population. I also live very close to my parents, and, when the time comes, my sisters and I will take care of them (and each other in the event one of us gets sick).

  7. I have no children. I hope I get a killing disease so I won’t have to face years in a nursing home, like my parents. Sad but true. 😦

    I absolutely think it should be everyone’s right to decide when they want to die. Until that happens, I’m hoping for the disease.

    1. Hi Theo- You’re in good company. A growing percentage of Americans choose not to have children, and those of us who do have children can’t expect them to be our primary caregivers as we get older. There are glimmers of hope in Gawande’s book about improvements in assisted living facilities that would actually bring them closer to the idea behind them in the first place: preserving residents’ independence and dignity. Of course, there are also people who will never need that kind of assistance. I’m hoping to fall into that category, but I need to be prepared for alternatives in the event I don’t.

      1. How does one prepare to fail, either mentally or physically? I admit to spending a few days this year pondering my eventual fate and scaring myself to death. Both my parents suffered strokes; if that is what awaits me, I hope it’s a massive humdinger that puts me right out. I see how they live, and it’s the last thing I want for myself.

        1. have five chronic diseases, three of which are potentially fatal. I am estranged from my family (brothers and sister only) and have no one to care for me should I fail. I have every intention of taking my own life, assisted or not, when I become unable to live independently. I see no reason to stay any longer.

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