Earlier this week, a friend and I went to see Still Alice, a movie about a 50 year old linguistic professor diagnosed with early onset Alzheimer’s Disease. Alice, played by Julianne Moore, tries to manage her disease as long as she can, but eventually can’t be left alone. In one of many heartbreaking scenes, her husband and children sit at the kitchen table, trying to decide who can care for Alice while Alice sits almost unknowingly on the couch, unable to make decisions for herself any longer or even understand the decisions her family was trying to make.
As I sat, crying, for most of the end of this movie, I couldn’t help but think about some of the issues that Atul Gawande brought up in his most recent book, Being Mortal: Medicine and What Matters in the End, which I’d just finished reading.
Talking about death or debilitating illness is one of the most difficult conversations to have, but it may be one of the most important. In Being Mortal Gawande explores this challenging topic, looking at our modern experience of mortality and how modern medicine can and cannot address this time in our lives (emphasis mine):
You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine failed the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions – nursing homes and intensive care units – where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.
One of the more striking sections, for me, was thinking about how expectations for aging are different between caregivers (often adult children) and the elderly. While safety is often cited as a priority for caregivers and nursing homes, many elderly people instead hope to maintain a sense of autonomy, routine and independence. The question then becomes whether it’s better to make decisions that help people be safe (perhaps at the expense of their happiness or pursuit of simple pleasures) or find ways to help them live as independently as possible. There are a lot of different models to consider, and I hope that options for care continue to improve.
Everything that Gawande writes about his experience as a doctor and the experiences of other doctors, patients and families trying to navigate end of life care is smart and thought-provoking. But this book is truly elevated by what comes next – a close, heartfelt and honest account of his own father’s death. Gawande’s experience helping his parents through a challenging diagnosis and the decisions that come with intervention or palliative care for the elderly was so moving for me to read. I didn’t realize how invested I was in feeling in this individual experience until I was crying through the last pages. It was remarkably good.
Of course, a lot of the emotional heft of reading a book like this one comes from thinking about your own family and experiences with aging and dying. If there’s one takeaway from this book, it’s that having conversations about end of life care with the people you love is hard but very necessary. We all have individual needs and expectations for what our lives will look like as we age, and the only way to honor them is to truly listen. This book is a great way to start those conversations.
Other Reviews: S. Krishna’s Books | Read Around the World |
Backlist Bump: Knocking on Heaven’s Door by Katy Butler
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This author seems right on— I see this with my SILs parents 97, and 94 both in nursing homes on lots of meds. Is that living? My doctor said most of his patients are now elderly, living longer because of meds–but what is the quality of a long life in cases like this?
That’s a huge question, and one that this book made me think of in a different way (balancing goals of caregivers versus desires of elderly patients). There’s not an easy answer.
Being Mortal sounds like an incredibly important book that I should really get my hands on.
I haven’t been able to see Still Alice yet but I definitely will. I’m almost scared to see it as the book almost destroyed me :*(
I hadn’t read the book but yeah, the movie was pretty crushing. Julianne Moore was just wonderfully sad to watch.
This sounds like an important book. My mom is 88 and we’ve had conversations about death at her urging. I found the conversations much more difficult that she did.
I hope to see Still Alice before it leaves the theater.
I’m glad you were able to have those conversations with your mom. I would imagine they were empowering to her, giving her a chance to tell you what she hopes for her life.
This sounds like a really fascinating, important book.
Like Jen, I’m scared to see Still Alice because of how I felt while reading it. This book sounds like a thoughtful approach to an important topic.
Really great review! These are such impossible questions in my mind; the dilemma of quality v. quantity is difficult to manage in so many areas of life.
Absolutely! Like I said in the review, the part about safety stuck with me a lot — what’s the point of making sure someone is safe, if doing that takes away many of the simple pleasures they have in life. How do we assess risk management differently when we know someone is already on the decline because of age or illness?
My mother is 78 but lives an incredibly full life – so much so, I have to schedule family things with her in advance! This is a change for her – just fifteen years ago her life was very different. I can see how independence and autonomy have made such a huge difference for her. It’s an important question, safety vs. independence and autonomy, but I’d like to think it’s not an either/or question.
Definitely — I think the book makes a strong case that it doesn’t have to be an either/or question, even though in many cases it ends up being one. He outlines quite a few innovative senior living strategies that I would like to see expanded.
I was very moved by many of the stories in this book and especially by the author’s narrative regarding his own father’s health journey. The concepts and suggestions that he shares are certainly difficult ones. No one wants to think about much less talk about end of life decisions and care. But, and this is a big but, when you are at that place in life or your cherished loved one is, it is incredibly helpful to have at least broached the subject. I’ve gone through this journey with both my own parents and also watched my sister’s family go through it with her. And it is so hard, but don’t we all want our loved ones to have the respect and dignity of their own choices. A very important book and one I’ll be recommending to everyone. Very touching review.
Yes, exactly — even if it’s hard, it’s important to do because it will give the people we love a chance to articulate their choices. And as the author points out, knowing those choices in advance can make decisions easier for caregivers.
I’ve got Still Alice on my bookshelf to read and this one on my library wish list. I think these are big questions for us to deal with. My father and brother and brother-in-law are physicians, and I think they’re probably more aware of the suffering on the patient side than many of us are. In some ways, I think prolonging life can be a somewhat selfish act on the part of the family. For example, I can’t imagine life without my parents, so I want them around as long as possible. But I also don’t think they want to live in the way many elderly people do.
I would love to hear thoughts on this book from a physician, and whether some of the things Gawande suggests make sense to them. I think you could have some really interesting conversations with your family!
Still Alice sounds so sad. Watching my husband’s grandparents suffer from end of life situations was rough on the whole family. It took a combination of many of us to care for them. This book sounds like it would really present sides of this discussion that aren’t often heard.
One of the things he touches on is how changes in family structure — people spread out, many working full time while trying to be a caregiver — has led to the growth of assisted living and nursing homes. It does take many people to help care for people as they age, and not all families can do that as well as they wish they could.
I grabbed this book from the library yesterday afternoon. So far it’s excellent!
I’m glad to hear it!
Yes, this book won so many accolades last year, I’m definitely interested in reading it — especially as my Hub’s parents passed away recently. There’s so many issues as parents or loved ones age. It’s an important book I’m sure