Can we talk?!

Joan Rivers peppered her routines with her signature riff, aggressive and not a question at all, but a promise of some outrageous personal observation under the banner of truth and openness.  Audiences waited with hope and dread for what would come next.

Atul Gawande, surgeon and writer [The New Yorker], in his latest nonfiction book, Being Mortal:Medicine and What Matters in the End, 2014,  asks us the same with a much more serious demeanor.

We’re all going to die. Can we talk?

Can you and I talk, here, in this book? And can We, all of us, talk to each other – when mortality begins to show? Gawande’s  question really is a question.  It is also a plea that we stop holding the collective illusion that deferring death by any medical procedure possible is the same thing as living a good life.  Death comes to us all, he says,  and how we live is more important that how long we live. We have to learn to ask, not, “What will restore me as I was before,” but “What do I want?” “How do I want to live, for the next days, or weeks or months?”

“This is a book about the modern experience of mortality–about what it’s like to be creatures who age and die, how medicine had changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong.

There are two major threads to the book, one of aging, frailty and how to manage safety and autonomy. The other about mortal illness, coming earlier before old-age, and so with much less time to absorb and plan.

He opens with a brief look at pre-modern ways of dying and the involvement of large families — including that of his own grandfather– and shows that the less familial, more medicalized, experiences we have now are not due to personal failure but to the profound changes in social-material culture.  Technology and wealth have created independence in young and old alike.  It is not only the young who do not/can not care for their elders as was commonplace hundreds of years ago, but it is elders who do not wish it –to be a burden, to be told what to do by a son or a daughter, to give up their independence. We have changed.

Though a renowned surgeon himself, and the son of two medical doctors, he found that neither he nor many in his profession understood the need, or had the words, to talk about, mortality. Doctors are totally unprepared to help patients and families recognize and confront “the realities of decline and mortality.” Instead, by doing what it does best, diagnosing a problem and setting about solving it, medicine “has turned the process of aging and dying into medical experiences.”

Through a series of well observed encounters with patients, his own and of other doctors, and of his own father, Gawande describes the ways pain, illness, loss of faculties manifest themselves and how much is done to ‘fix it.’ Some of the mini case-studies are of young children, one of a pregnant woman, others of folks in late age. ‘How long do I have to live?’ is a constant question.  Seldom is it asked, ‘How can I live most comfortably, most alert, for whatever time I have left?’

In case after case he shows us sequences of often experimental interventions in which the real odds of success, as well as the reality of possible side effects, are obscured.  After months of attempts with chemo or radiation or surgery the patient succumbs.  In hindsight it was often predictable.  Had only palliative care (to reduce pain and take no extreme measures) been given many would have lived as long and in better circumstances.   Patients and doctors are equally at fault, he says.  As a young intern, and beginning writer,  he participated in a long intervention for a middle aged man with prostate cancer, already metastasizing.  After an eight hour operation , “a technical success,” he died anyway.

“… more than a decade [later] what strikes me most is not how bad his decision was but how much we all avoided talking about the choice before him.  We had no difficulty explaining the specific dangers of various treatment options, be we never really touched on the reality of his disease … [we] had seen him through months of treatments for a problem [we] knew could not be cured.”

The hard thing to come to grips with, especially as high technology increases dreams of miracles, is to realize that “people with serious illness have priorities besides simply prolonging their lives … But usually no conversation about this ever takes place

“…when we imagine ourselves to have much more time than we do, our 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.”

 But it is worth registering.  Several recent studies have shown quite unexpected results.

“Two thirds of the terminal cancer patients … in the study reported having had no discussion with their doctors about their goals for end of life care, despite being, on average, just four months from death.  But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit.  Most of them enrolled in hospice.  They suffered less, were physically more capable, and were better able, for a longer period to interact with others.  In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression.”

Even just having the discussion, he says, regardless of the particular wishes, is helpful, in getting clarity and reducing anxiety.

His investigation of the failure to grapple with end-of-life moves from professional to the personal when his own father finds, after a well-lived life, that he has a spinal tumor, threatening to turn him into a paraplegic. Even with some practice with patients, having end-of-life conversations with his own father and mother, was difficult. A judicious mix in the book of his own intimate experience along with those from a professional distance allows us to feel the very real difficulty, but also the possibility,  of moving from the current, unquestioning acceptance of one procedure after another, to a more thoughtful, and often more equanimous  understanding.

Ω

A good part of the book is a history of efforts to demedicalize the end-of-life experience; to keep, to the highest degree possible “authorship” of their lives in their own hands.

He introduces us in the early chapters to several path-breaking innovations in ‘elder care.’  When Karen Brown Wilson built, from her own shoe-string funding, an “assisted living home” in Oregon in the late 1980s, her intent was to avoid end-of-life nursing homes all together.

“She was attempting to solve a deceptively simple puzzle: what makes life worth living when we are old and frail and unable to care for ourselves?”

The more he observes, and experiences the more he is convinced: 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.”

He finds a Bill Thomas, who after taking over a nursing home brought in dogs, cats and birds..   He believed “that a good life was one of maximum independence.” After initial resistance by staff and patients alike, the new resident creatures became accepted and necessary.  Patients who had been sitting for months now offered to walk the dog. Birds were given names and their lives observed with great interest.  Researchers followed the progress of the innovations.  Compared to a similar nursing home nearby “the number of prescriptions per resident fell to half.  Psychotropic drugs for agitation decreased in particular.  Total drug costs fell to 38 percent of the other facility.  Deaths fell by 15 percent.”

Ω

It is not a data-heavy book though some if it is quite interesting:

In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life and most of that … for little apparent benefit.”

…only 3 percent of how long you live , compared to the average, is explained by your parent’s longevity; by contrast up to 90 percent of how tall you are is explained by your parents’ height.

In America in 1790, people aged sixty-five and older constituted less than 2 percent of the population; today, they are 14 percent … in other countries they are over 20 percent.

For the compulsive searchers among us Gawande touches on Maslow’s famous hierarchy of needs and how it changes as we age. He draws our attention to Leo Tolstoy’s tale, The Death of Ivan Ilyich, for its profound insight into what an ailing man most wants, and that rare person who perceives it and is able to satisfy in the smallest and most comforting ways.

“This simple but profound service–to grasp a fading man’s need for everyday comfort, for companionship, for help achieving his modest aims–is the thing that is so devastatingly lacking [today].

Ω

As he travels the road of diminishment with his father he points to the changing qualities we desire in our doctors.  The once unquestioned role of a medical authority, who knows all and directs all, has been giving way to the newer informative model, in which technical terms and possible outcomes are offered in a quite neutral manner, leaving the patient or family to make difficult choices. The coming model, he says is the interpretive doctor, offering medical and technical details but involved as well, as a counselor or guide,  a doctor who will share the emotional burden with a simple “I am worried about this….”

For all the signs of change towards a new view, both among ordinary folks and the medical profession, “it is still an unsettled time.  We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norms.”

“As we try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality … we are novices.”

And of course there is ”the still unresolved argument about what the function of medicine really is… is it just to fight death and disease?  Or to recognize when a battle to return to health is lost and help elicit wishes and find acceptance?

Ω

I won’t deny, when he loops through all the ways our bodies age, I thought to myself, “Do I want to know so much, now?”

“Scrupulous dental care can help avert tooth loss, but growing old gets in the way,  Arthritis, tremors, and small strokes, for example, make it difficult to brush and floss, and because nerves become less sensitive with age, people may not realize that they have gum and cavity problems until it’s too late. In the course of a normal lifetime, the muscles of the jaw lose about 40 percent of their mass and the bones of the mandible lose about 20 percent, becoming porous and weak.”

Can we talk, indeed!  Could I ignore this “decreptiude” as he calls it,  for at least one more night?

But as he says repeatedly: don’t wait until the last moment.  Talk to those around you.  Push through the discomfort and talk, early, and talk again.

Being Mortal is a necessary and hopeful book,  the best kind of hope — that, confronted with a problem we can learn from what others have done, and correct course if necessary.  We can avoid the siren call of ‘there’s another thing to try’ and spend good, and final, days doing what we want to do, as best we can;  the process of doing that creates the outcome we are setting out to get.

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Gawande might have made good use of Joan Rivers as well, beyond her pithy phrase.  The day before she died she was doing a monologue on stage. She knew her goal:

“I would not want to live if I could not perform. It’s in my will. I am not to be revived unless I can do an hour of stand-up!

 That’s the task we all have as we age, or help others as they age. What do we want? How do we best live the time we have left?

A book not just recommended; indispensable.

Get a copy, read it and pass it on, as friends did to me and I will now to others.

 Ω

If you want an interview, here is Gawande on Science Friday. 

If you’d like it short and sweet, here he is with Jon Stewart:

And, in one hour, on Frontline,  a very good precís of the segments of the book dealing with mortal illness and end of life decisions — with some very brave folks recounting their hopes and sorrows, and a scrupulously honest Gawande talking about how he often didn’t measure up as a good guide.

In fact, don’t wait.  Go watch this and be prepared to be troubled — in a good way.