A book on what we get right and wrong on aging and dying
“Every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something.”
– Atul Gawande
I wouldn’t count my dad’s death from his short bout with lung cancer as typical by modern standards. He wasn’t in a hospital. He wasn’t accompanied by medical professionals. He never had chemotherapy.
Instead he died in his own bed in his own house with his kids taking turns keeping vigil.
It’s what he wanted. By the time he was diagnosed, the cancer was too progressed for treatment to be curative, so he decided to live out his remaining time without impediments of medicines that would weaken him more.
We tried to accommodate, even though it went against our grain at times to not give in to the medical establishment’s push to prolong life at any costs, and our own desire to keep Daddy here longer.
But after reading Atul Gawande’s phenomenal book Being Mortal, I’ve found even more peace that our decision to honor our father’s choices was the right one.
Gawande, a cancer surgeon, says,
“Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging, and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs. That experiment has failed.”
If you have someone older in your life, or you ARE someone older, I can’t recommend this book highly enough. While it’s not a how-to book on aging well or an encyclopedia of options for health care, it is a thought-provoking walk through the aging process that we all will experience if we live long enough.
And one that we’ve probably already walked though with others, if not yet, then definitely to come. I wish I knew then with my parents what I know now.
It’s also about conversations we need to have with our doctors, our loved ones, ourselves. By our longing for the most optimistic reports, we encourage doctors to not give us full reports; the patient is always right and the patient doesn’t want to hear bad news. But,
“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.”
In the book Gawande shares experiences of his research, of his own patients, and of his own father’s death. Some facts I expected; some surprised me.
“It turns out that inheritance has surprisingly little influence on longevity. James Vaupel, of the Max Planck Institute for Demographic Research, in Rostock, Germany, notes that only 3 percent of how long you’ll live, compared with the average, is explained by your parents’ longevity; by contrast, up to 90 percent of how tall you are is explained by your parents’ height.”
~ * ~
“The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness. Elderly people without these risk factors have a 12 percent chance of falling in a year. Those with all three risk factors have almost a 100 percent chance.”
~ * ~
“The risk of a fatal car crash with a driver who’s eighty-five or older is more than three times higher than it is with a teenage driver. The very old are the highest-risk drivers on the road.”
But it’s not just the statistics and facts that are troubling. It’s also the lack of dignity and freedom that many elderly often feel in their final years.
“It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life.”
It’s not all bad news, though. Gawande shares that as people age, they interact with fewer people, yet the interactions they do have are more meaningful. They’re more intentional about who they’re with and who they love. Their focus turns to being, not doing, and on the present, not the future or past.
“You would expect people to grow unhappier as they age. But Carstensen’s research found exactly the opposite. The results were unequivocal. Far from growing unhappier, people reported more positive emotions as they aged. They became less prone to anxiety, depression, and anger. They experienced trials, to be sure, and more moments of poignancy—that is, of positive and negative emotion mixed together. But overall, they found living to be a more emotionally satisfying and stable experience as time passed, even as old age narrowed the lives they led.”
One of the biggest take-aways for me was the paradox between autonomy and safety. In our efforts to keep our elderly “safe,” we strip them of their independence. Maybe it’s better to live with more risk if it means more freedom and happiness? It’s something I’ll think more about.
“Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. . . .
Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human.”
The book does offer suggestions on ways we can do aging and death better. Much of it requires listening more, accepting mortality as normal, and abandoning our need to always try to fix it.
None of us will defeat death in the physical realm. That’s a given. But we can respect the transition as much as possible in a way that is life-enriching and dignifying. With hope. With courage. With love.
Although this book isn’t “Christian” per se, the issues it addresses are very spiritual, and my faith in eternal life through Jesus makes these issues even more relevant.
“No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. ”
As Gawande points out, the two unfixables are aging and dying. We can’t eliminate either. We can only manage them within narrow limits.
My dad decided how he wanted to manage them before they managed him. It’s how he chose to die. I don’t consider it a bad way to go, although I wasn’t ready for him to leave and I did see him experience more pain than I wanted to.
How do I want to die? Probably like you—with as little pain as possible and after many satisfying years with family and friends.
But also like you, it probably won’t be entirely up to me.
Ultimately, God is the only one who gets the final word about the end of our lives here. And for that, I am grateful.
* * *
Along with Just Mercy, Being Mortal is one of most influential books I’ve read in awhile (and I go through a lot of books).
Unfortunately I was unaware of “Being Mortal” when it PBS aired about it on Frontline earlier this year. Here’s a clip.
[Watch here if you can’t see the video below]
- If you can’t do it every time
- Do you read the Bible over and over?
You cannot begin to imagine what impact his is having here, on multiple levels; first, we as caregivers in tandem to Joy’s dad with multiple ailments (and a longevity gene that must have been a recessive on both sides of his family), followed by Joy being burdened with my care as a cancer patient and a potential time limit roughed in on that. The material resonates in so many ways, and leaves us with more questions than answers at this point, but answers will be forthcoming – we’ve faith in that.
Thanks Lisa! Great post!
I’m so sorry for all you and your family are going through, Rick. 🙁 I follow your FB updates and I still find it hard to believe that you’re going through this. Yes, I do believe there will be answers at some point. I hope in that. Praying for you, brother!
This is something we, at my house, a house full of nurses now, talk of constantly. I’ve been where you’ve been, and I tip my hat to your dad. That was the end of the great generations. The best in this life is when it’s lived by our own terms… May I have the strength to live this life, in the end, the way your dad and mine did… may it bring honor and proof of our Father’s sovereignty to a lost world.
I imagine you do have lots of these conversations, Floyd. And probably several on topics you don’t even want to talk about with a house full of nurses. ha. But they are good things to consider. It’s great that your family is so open. Yes, I do hope we can go out like our dads in a Father-honoring way.
This sounds like a great read. I’ve known too many people die from the effects of chemo that’s supposed to keep them from dying from cancer to not question if we’ve gone awry in some of the things we do.
Exactly. I’ve seen this, too, Elizabeth. 🙁 My dad had seen some of his own friends suffer this way and it really influenced him to reject the offer of chemo. I understand it; I’d rather live shorter time here not feeling horrible, than to stay here longer but be in pain every minute of it. We have such a wonderful future on the other side to go towards.
I read Rick’s and Floyd’s comments because I know them via our blogs. I know their hearts. My own mother died in 2004 from a rare form of lung cancer which mostly struck woman who were non-smokers. One of my brothers had just adopted a little girl from China and that weighed in her decision to take chemo (which actually sped up the spread of the cancer). I have already told my wife and girls “No chemo” or no prolonging my life. I admire your dad and I admire your family for honoring his wishes. Sounds like an interesting book.
It’s good that you’ve let your wife know already what your wishes are, Bill. Even if my dad hadn’t specifically said so, I would have guessed that would have been his wishes anyway. But it was still incredibly important to us and to him that he made those decisions himself after the diagnosis because sometimes we change our minds once we’re diagnosed with something. I also understand your mom wanting to do everything she could to stay alive to see her new granddaughter grow up. End-of-life decisions are rarely as black and white as we’d like them to be.
I really appreciate this review and your thoughts that go along with it. What a difficult topic to address! I’m your neighbor today at Thought Provoking Thursday, and wishing you all the best!
Thanks, Michele. I hadn’t really intended to write so much about this book, but the more I began writing, the more I knew I wanted to include. It really includes invaluable insights.
As you know, this book resonated with me on many levels as well. I was particularly struck by the case of a young woman with cancer and not much hope, yet physicians kept offering different drugs with very little chance of doing any good for her particular cancer or experimental treatments that gave the family hope, yet realistically were not likely to help, and she was pretty much decimated in the process.
The hard thing is that there is no one right answer. There may be times to treat aggressively, or other times when that will only end the patient’s life sooner or more miserably. My preference right now, when there is no diagnosis on the table, is that if I were to receive one, I’d want my family and doctors to do everything possible. But if that time comes, I might change my mind depending on the circumstances, prognosis, treatment options, etc. It’s almost overwhelming to think about now, but I am thankful we can depend on God’s guidance then and every moment until then.
Thanks for that link. I wish I had known about that program when it was on! Maybe it’s online somewhere or we can watch for it to be rebroadcast.
I do think we can probably watch the program online. I did a quick Google search last night and lots of hits came up on YouTube that I hope to look into later.
I agree with you that it’s too hard to say on this side of a diagnosis exactly what we’ll choose. So many factors go into these kinds of decisions, and they look different for everyone. I *think* I know what I’d do if my prognosis was slim (probably be like my dad), but who can say for sure until faced with it?
I’m adding the link here to your review of Being Mortal for others to see. It was so informative (wish I’d thought to add the link sooner!).
Thank you, Lisa, for this post. It caught my attention, as we are caring for my 94 year-old father, who has experienced some physical losses in his life. He is in a nearby Assisted Living facility, and we visit him often. It has been a very difficult journey for him, and also for us as family. It seems that he has early dementia, and along with some of his own character qualities from the past (needing to be in control, for example) that have multiplied now at his age, he has become very difficult and very upset. As family, we are wanting to learn all we can in this heart-breaking journey … thanks for this book recommendation. It was also recommended by a family member of ours, and I really appreciated reading your review of it. Thanks so much!
My heart goes out to you, Cherry. 🙁 Such a difficult position for all of you. When my mother’s dementia got too bad, we had to move her into assisted living for the final few months of her life. It was hard on everybody, even though we thought then and still think now that it was the right decision at the time. Thankfully her basic character qualities were sweet and only occasionally was she combative (which wasn’t like her at all). But if it had been my dad—oh my, it would have been a different situation. ha. He would have been more like your father. I hope that this book will be helpful to you if you have time to read it. It includes lengthy sections on nursing homes and assisted living situations.
These are such important conversations for me with my parents alive and struggling in their 80s. Thanks for sharing this book, Lisa. I have a feeling it’s going to be a must-read …
I guess we’re all dying daily, huh? With all our emphasis on living well, a careful consideration on dying well is needed.
Love this, Linda—we do need to consider more how to die well. It’s not something we’re as comfortable talking about, but when we see someone who does it well, we recognize it. Praying for you as you care for your own parents.
One of the blessings of my Mother’s brain bleed and the decision to take her off support (she had no brain activity) was that she had a living will. We already knew what she wanted. It’s natural for a spouse and children to want to prolong life, even if there’s no possibility of recovery. As always, your book recommendations are added to my wish list!
I strongly advocate for living wills myself, Pamela. They are extremely important. Before my mother’s dementia got bad, she let us know that she didn’t want to live on at all costs—if her quality of life deteriorated past a certain point, she didn’t want to be kept alive unnecessarily. But yes, it was still difficult to not opt for feeding tubes, etc., when the time did come for us to make the decision after she was no longer able to make those decisions on her own. I’m glad your mother had a living will so your decisions were clearer to make (although not necessarily easier).
Another good one for me, Lisa. Thanks so much for sharing this. I always wanted Mama to live “her life her way,” but it just did not happen that way all of the time. Circumstances just turned things in other directions. But I will look into this book for myself and for my husband’s life as we age.
Glad I came by…AGAIN! : ) from Faith Barista today.
I think you will enjoy this book, too, Linda. And with the experience you had in taking care of your mom, you’ll be able to relate to much of it. Yes, often times circumstances turn in such a direction that we can’t have things turn out “our way”; those types of decisions are addressed in this book as well. Hard stuff. I guess much of life is learning to let go of life too….
As you know, I walked a long journey with my dad before he died. And yes, a bad fall was the precipitating factor. In the last 15 months, I am walking the path with my mom who just turned 82 in December. I found your remarks, and the quotes from the book, very enlightening. Needless to say, I am heading over to Amazon and ordering it.
Thank you for alerting me to this most helpful book.
I thought that statistic on falling was interesting. So many times it is a fall that is the final straw for someone already in compromised health. I’ve seen that happen in several cases, and I’m sorry you had to experience that with your father. I continue to pray for you as you continue to walk with your mom; it’s not for the faint-hearted. But I also know your love and your faith will see you through everything.
Hi Lisa! I saw this doctor on TV sometime ago, talking about his journey with his own parents. He sounded like such a caring, down to earth guy. I’m not surprised that his book is much the same.
My Mom died much as your dad did. She died at home, with her children taking care of her. She had her diagnosis of cancer for two weeks. She went fast, but I think she wanted to.
We are much more aware of ‘end of life’ issues with my father now. He is very open to talking about it, and I think it’s because he saw my Mom go through it. He does have thoughts and ideas about his legacy etc. It’s never a good idea to talk ‘down’ to anyone, especially anyone discussing death and dying.
This sounds like a fantastic book. I’m going to definitely read it.
I’ve never seen or heard Gawande until I watched the YouTube video yesterday—I think I was expecting an accent because of his heritage so it surprised me that he had no accent. Yes, he does seem very gentle and caring (as well as intelligent). I failed to mention he also is the author of The Checklist Manifesto, another book that I greatly loved.
I’m glad your mother was able to go out in the way she wanted to, given the circumstances at least. There’s no fantastic way to go, but I think it’s got to at least be better when you’re surrounded by those you love and who love you. I pray you and your dad will continue to have constructive conversations in the future. It definitely pays off in the long run to make wishes known BEFORE the final things strike.
I experienced that same thing with my mom. She died within 2 weeks of diagnosis of cancer and I was so angry at first for her quick departure. But like you, saw little pain and suffering and she chose this direction. Just ordered the book from the library. sounds interesting and as a nurse I look forward to reading it. Thanks Lisa
Wow. 2 weeks is definitely quick. We had a little less than 2 months with my dad, but a couple months prior to that, we knew something was wrong because he was losing so much weight. It all still felt like a blink of an eye though. If you read the book, let me know what you think. I’d love to hear your perspective on it.
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