This is not a book review. If I were to write a review it
would be very short: This is a great book, go read it. Instead below I share my
appreciation for the book through excerpts that resonated most with me. They
probably won’t be the same for you, but that’s OK, diversity of perspectives
helps make life interesting
For me, there were three main points that stood out. None of
them are new, but the way Dr. Gawande lays them out add new texture and clarity
to our understanding 1) Neither medicine nor society as a whole deals well with
mortality 2) We can gain better perspective due to certain life experiences 3)
We can translate that perspective and do better by most importantly listening (although
by saying “most importantly” I don't mean to minimize the physical changes to
care that are needed).
First the problem – we just don’t handle the topic or
mortality well. Neither the medical community:
The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. Most doctors treat disease and figure that the rest will take care of itself. And if it doesn't— if a patient is becoming infirm and heading toward a nursing home— well, that isn't really a medical problem, is it?
Nor society in general:
This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals— from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly— but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.
Second, for many of us there will come a time when we have
to grapple with these issues. Gaining perspective often occurs because of
something that happens to us or to a loved one. Perspective can open us up to
thinking about mortality in a more helpful way. One of the reasons I think this
is a great book is that the act of reading it can help many of us gain that
perspective:
Tolstoy saw the chasm of perspective between those who have to contend with life’s fragility and those who don’t. He grasped the particular anguish of having to bear such knowledge alone. But he saw something else, as well: even when a sense of mortality reorders our desires, these desires are not impossible to satisfy.
This next passage may be the one paragraph I’ve ever read
that best sums up the problem we face in dealing with mortality. We have not
built our system about what we would want for ourselves and we suffer for it
when inevitably we are in that system facing our own end:
A colleague once told her, Wilson said, “We want autonomy for ourselves and safety for those we love.” That remains the main problem and paradox for the frail. “Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.”
Gaining perspective, understanding what we would want in
those circumstances, brings us to a key question:
And the insight was that as people’s capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives— resisting the urge to fiddle and fix and control. It was not hard to see how important this idea could be for the patients I encountered in my daily practice— people facing mortal circumstances at every phase of life. But it posed a difficult question: When should we try to fix and when should we not? (emphasis added)
When we get to a point where we can ask the right questions,
we have to be prepared to listen to and respect the answers:
People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.
The system we currently have is stacked against doing things
appropriately. We have to battle against falling back into old habits:
The trouble is that we've built our medical system and culture around the long tail. We've created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets— and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
Finally, the book shows us individuals and groups across the
country that are doing better. If we can learn from them the benefits are
priceless:
In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.
There you have it, my condensed journey. I’ll end by one
last time encouraging you to read the book for yourself.
All excerpts from:
BEING MORTAL: Medicine and What Matters in the End
By Atul Gawande
282 pp. Metropolitan Books/Henry Holt & Company.
