Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.Last summer, my seventy-six-year-old mother-in-law, beginning to show the anticipated signs of the Alzheimer's that runs in her family, was diagnosed with bowel cancer. She was rushed to surgery, a large mass was removed, and she was declared cancer-free without further intervention. The good side: She couldn't keep it in her memory that she had cancer (even in the hospital pre-surgery she would whisper, “Why am I here again?”), and even today, she is absolutely free of any worries that her cancer might come back. The flipside: The strain of the surgery, even if she wasn't really conscious of it, has advanced her dementia at an alarming rate. My inlaws live over an hour away from the rest of their family, and so it is to my nearly eighty-year-old father-in-law, alone, to get his wife out of bed every morning, clean, dress, and feed her, help her move from room to room, take her to appointments, and do all of the shopping, cleaning, cooking, etc. She had to have her teeth removed just after Christmas, and now has dentures that she refuses to wear. Most nights she wets the bed, stubbornly having removed her Depends, and as she doesn't like the feeling of sleeping on the plasticky mattress protector, she has a habit of removing (and hiding) it, along with all her sheets and blankets, and wrapping herself in dirty laundry for warmth. Some nights she gets up, takes off all her clothes, and goes to sleep on the bathroom floor. Last week, not half an hour after putting her to bed, my father-in-law went to check on his wife, and when he had to force the door to her bedroom open, he found her laying on the floor blocking it, yelling at him to leave her alone. Every day, she looks out the front window of the house she's lived in for over thirty years and says, “It's nice here but I want to go back home. I don't know why you won't take me home.” Naturally, my husband and his sister are feeling helpless, and for years their main line of conversation has been about how stubborn their parents have been to remain in their home this long; if they had moved closer to us five years ago, we'd be able to help them more. Now, suddenly, the conversation has turned to, “What if we've waited too long and Mom needs to go straight into care?” Having had an idea what Being Mortal was about, I didn't pick it up this week by coincidence.
The battle of being mortal is the battle to maintain the integrity of one’s life – to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse.The book is divided into two sections, with the first describing the alarming lack of gerontologists (even with the aging population, 97% of med students don't take any courses on gerontology), the history of the care of the elderly (from home-based, to poorhouses, to warehousing in hospital wards, to the modern day nursing home), and a look at the contrast between typical medical-based eldercare facilities (where health and safety are the only concerns) and assisted-living communities (which aspire to provide autonomy and dignity and a true feeling of “home” for their residents). When my husband was a boy, his grandmother's Alzheimer's advanced to a stage where she wasn't able to take care of herself safely, and she moved into his family home for the next ten years. When she became a safety risk for the entire family (nearly burning down the house) and the stress of a broken hip rapidly advanced her dementia, the family made the hard decision to put her into a nursing home; a sterile ward that provided no privacy or autonomy, but certainly, health and safety. Putting her mother into an institution was the hardest thing my mother-in-law ever had to do, but she made it perfectly clear to her children, “When and if this happens to me, I don't want you to feel any guilt. You'll need to be free to live your own lives and I won't know the difference. I trust you both to know when it will be time.” Over the past few weeks, my sister-in-law has posted an article on her Facebook wall that exposes the fact that seniors' homes spend less per day on food for their residents than do prisons, and shared a letter to the editor that complains that PSWs in local seniors' homes are so overworked that they are allotted only six minutes per resident to get them up, toileted, groomed, and dressed before mandatory breakfast. Both were posted without comment by this concerned, bewildered, conflicted, most loving of souls.
Our ultimate goal, after all, is not a good death but a good life to the very end.The second half of the book is about end-of-life care, no matter the age of the patient. Author Atul Gawande – himself a surgeon and professor of medicine – confesses that his first instinct when confronted with a terminal patient is to look for what parts he can fix; even if the life expectancy is only barely extended and the quality of that life is reduced, looking for the fixable is the priority of Western medicine. He provides examples of those terminal patients who were encouraged to keep fighting right up until the day they ended up dying in the ICU hooked up to feeding tubes and ventilators, and counters with stories of those who were offered hospice care and ended up dying in their own homes, surrounded by loved ones, in control of all decisions. It isn't hard to determine which is the option that affords the most dignity.
Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.I went to visit my in-laws this week – about to turn eighty, my father-in-law had to attend an hours-long driving test, which he, thankfully, passed – and I was there to keep my mother-in-law company. No sooner had he left when a PSW showed up, unannounced, and explained that she was there to provide aid and respite. I explained that I was there to provide aid and respite, and because my mother-in-law had already been cleaned and dressed and fed before even I showed up, the PSW sat down with a coffee and chatted for the next two hours. My husband and his sister have been pushing their father to demand the community services to which they are entitled, and it looks like help is starting to trickle in (there have also been introductory visits by a PN and an OT). Also, my mother-in-law had had her medications tweaked last week and she looks much steadier on her feet; a little clearer in her mind. As we sat in the living room and she looked out the front window, she said, “When I look in this direction, nothing seems familiar, but if I look back this way, I see Sandy's house across the way and know that I'm home. But sometimes it doesn't seem like my home and I wonder if I'm starting to crack up. Sometimes I wonder if it's time for the nursing home, ha ha ha, but thank God it's not time for that yet.” I smiled and nodded uncomfortably.
Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?These are the questions, and most importantly, these are the questions that we need to ask my father-in-law. He has been incredibly patient and uncomplaining, but as one thing was piling on top of another and progressing so much more quickly than we had anticipated – as a blood vessel burst in one of his eyes and a cold took away his voice – we (middle-aged) kids were conspiring, trying to figure out, “What can we do with Mom to protect Dad's health?” What Being Mortal has really taught me is that that's not our decision: My father-in-law may be pushing eighty, but he's a thoroughly competent, engaged-with-life man, and if taking care of his wife of fifty-four years is giving him a feeling of purpose, and if living in the family home adds to the quality of life for both of them, it's wrong for us to think that institutionalised care is the preferred, or indeed only, option. For as long as possible, it would seem our roles should be to support them in their decisions, advocate for all the community care they can receive, and be ready to accept whatever comes next. I think I may need to buy this book to pass on.
Interesting aside that didn't fit into the review -- Gawande mentions the case of Nelene Fox: a woman who was suffering a chemo-resistant form of breast cancer and couldn't get her insurer to cover an experimental treatment, and while she was able to fundraise enough money to get the bone marrow transplant privately, she died anyway (leading to a lawsuit, won by her family, that spooked insurance companies into covering all such experimental procedures from then on.) Ultimately, it was proven through clinical trials that the bone marrow treatment wasn't effective anyway. Here's the interesting part: while Gawande uses this story to illustrate why American medicine will always press for a fix, even when it may be hopeless and therefore a cruel waste of a patient's last days, in The Emperor of All Maladies, author Siddhartha Mukherjee uses this same case to demonstrate the wonderful evolution of cancer treatment into an advocate-based system, where patients are free to demand their doctors keep trying everything until the bitter end. These are two Indian-American doctors/science writers, such similar backgrounds; such opposite conclusions.
And not for nothing, I'll add: When a Goodreads "friend" commented, "My parents are a decade younger than your in-laws, but the conversation has just started to trickle in amongst my siblings and I. My parents simply won't address it in any way. Zero discussion. "I'm too young to even think about it" my mother says. Tough stuff! I've had this book on my radar, but didn't realize the depth it would go into. Maybe I should be getting to it sooner than later", I replied with: "My parents are also a decade younger and they live 2000 km away from us "kids", deep in the woods of Nova Scotia, 45 minutes from the nearest town. When a 90 year old neighbour, stubbornly living alone to the end, died alone on his kitchen floor, my mother said, "That's the way I want to go". That HORRIFIES me, but this book is telling me it's her choice. I have no idea what to think about that."