I give this book five stars not because I loved it but because it is what I would call a necessary read, and I mean necessary for everyone, young, old, medical professional and laity alike. It’s about That Conversation, what Gawande calls in one chapter “Hard Conversations.” The subject is how we want to live out the end of our life.
Gawande is a surgeon and one of the best parts of this book is that he is learning how to have this conversation himself. He’s learning how to do it as a medical professional with his patients, and he’s not shy about telling us where and how he has screwed up. He is also learning how to do it as a son to his father, also a surgeon, who has been diagnosed with a rare spinal tumor.
The difficulty, he writes, is that in the last fifty years we have learned how to prolong life.
As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did…Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes…You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help…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.
Later he writes
You’d think people would have rebelled. You’d think we would have burned the nursing homes to the ground.
But we haven’t, and new discoveries and better medical practice mean that citizens of industrialized nations are living longer, healthier lives. “A life,” Gawande writes, “designed to be safe but empty of anything they care about.” The trick now is to make sure our aging populations are not just safe, or even–heresy! sacrilege!–not safe at all, but living a life that achieves quality of life, not just quantity.
The good news is, things are changing. (He doesn’t say so but you know it has everything to do with the Boomers, a generation now making decisions for their parents, and who will soon be making those decisions–or not–for themselves.) Keren Brown Wilson built the first assisted living facility in Oregon in 1980, and when that concept became bastardized people like Dr. Tom Wilson revolutionized an assisted living facility with two dogs, four cats, 100 parakeets and child care for employees that brought children back into the lives of the inmates (using that word deliberately, as Gawande does himself).
Researchers studied the effects of this program over two years, comparing a variety of measures for Chase’s residents with those of residents at another nursing home nearby. Their study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation, like Haldol, decreased in particular. The total drug costs fell to just 38 percent of the comparison facility. Deaths fell 15 percent.
From inmates locked away from life, warehoused until they died, Dr. Wilson’s patients became once again members of a community. And as Gawande goes on to say, this experiment and others like it are beginning all across the nation.
There is also Hospice, which organization Gawande’s father chooses to help him through the end of his life with palliative care. For Hospice, it’s all about making the end of each individual story as valuable to them as is physically possible for them. It’s impossible to say enough good things about Hospice and Gawande doesn’t stint them here. (Full disclosure: I already support Hospice and this book is making me double that support this year.)
I know it sounds a little macabre, but this is the one book you really should read. Make a teenager read it and they will understand that much more about what Grandma is going through. Make a Millennial read it and he’ll understand in spades how important that retirement plan is and how they should start one now. Make your doctor read it and she’ll see how important first asking those essential questions is, “What do you want? What is most important to you?” instead of automatically reaching for the scalpel or the drugs.
“Death,” writes Gawande
is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely–that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.
Me, either. Now I feel like I do. Read this book, and recommend it to everyone you know. It is very frank, very well written, and actually? Kind of hopeful.
See also on Vox, “2015 is the year America started having a sane conversation about death,” http://www.vox.com/2015/12/16/1011744….
Author and founder of Storyknife.org.