Book Notes: ‘Being Mortal’ mulls end-of-life care

“Being Mortal: Medicine and What Matters in the End” by Atul Gawande. Metropolitan Books, New York, 2014. 282 pages. $26.

Society is slow to change. We’ve learned how to treat diseases and conditions that, in the past, killed us well before our hair turned gray. But now that we know what to do, we don’t know when to stop doing it. Medical solutions are not always the best solutions. And yet “Fix it” remains the mantra, even when fixing it threatens great risk to quality of life.

Boston surgeon Atul Gawande’s new and important book, “Being Mortal: Medicine and What Matters in the End,” talks about the monumental change our society is undergoing with regard to how we care for the terminally ill, the aging and the infirm. He cites studies that highlight assisted living and hospice models that focus on “a good life to the end.”

These models cost less, and they yield greater quality and length of life. Yet there has been no national call to action. As Gawande shows, there are alternatives to the traditional nursing home or ICU death that work and work well.

One hopes, when contemplating this must-read book, that “Being Mortal” will spark a vigorous national discussion and produce immediate imperatives. Gawande’s earlier book, “Checklist Manifesto,” about how to curtail hospital practices that lead to infections, among other things, was such a call to action.

Gawande’s parents, who immigrated from India to Athens, Ohio, were also doctors. Yet all three of them were at a loss when confronted with his father’s end-of-life issues. In “Being Mortal,” Gawande introduces us to people who were in their declining years or who were suffering terminal diseases. He shows us how they made medical decisions, and when and how they transitioned from seeking a medical solution to finding value in their last days and weeks.

While all the people he follows in this book are affecting, none is more so than his father, who discovers he has a large tumor growing in his cervical spine. Options are limited, and some options had the potential to severely restrict his father’s independence with consequences like paralysis. How far are you willing to go just to be alive?

Modern medicine has the potential to bring with it “new forms of physical torture,” writes Gawande. Anyone with a dying loved one who winds up on life support in ICU understands. There are no last words in the modern deathbed scenario, just a shutting down of machinery. Through hard questions and with the help of trained professionals like hospice workers, it’s possible to consider other options.

Gawande lays out the problems and the options. In 1945, most deaths occurred at home. In the 1980s, only 17 percent of deaths occurred at home, and those were most likely due to the fact that they were sudden, like heart attacks or injuries. On the plus side, in 2010, about 45 percent of deaths occurred with some kind of hospice care. But half of Americans are likely to spend one or more of their last years in a nursing home and this option is usually devastating.

“The waning days 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,” writes Gawande. “We have allowed our fates to be controlled by the imperatives of medicine.”

We revere independence, regardless of our medical condition. What happens when it can’t be sustained, asks Gawande? And yet, “serious illness or infirmity will strike. It is as inevitable as sunset.”

Gawande touches on one problem I see all too often. “We feel as if we somehow have something to apologize for” when the body starts to fail. Gawande briefly describes aging. Since no one likes to talk about these things, he does us a service explaining what’s happening to us and our loved ones.

Some processes can be slowed with diet and physical activity, but they can’t be stopped. Things shrink, harden, leach, calcify and shut down. Aging most likely follows the classic “wear-and-tear” model more than genetic predetermination theories.

Our priorities are terribly askew. There aren’t even enough geriatric doctors to replace the ones who will retire and yet our elderly population grows and persists. In 30 years there will be as many people younger than 5 as older than 80. Right now, there are as many 50-year-olds as 5-year-olds.

In many ways, geriatrician Juergen Bludau encapsulates the main message of this book: The job of any doctor is to support quality of life — freedom from the ravages of disease as much as possible and retention of enough function for active engagement in the world. This is precisely the mission of geriatric and hospice care.

Much of the book’s value is in its very existence. It gives us a place from which to continue the discussion. Also valuable are the many anecdotes Gawande gives us — stories of people who are making a difference, either by their own examples or in their groundbreaking entrepreneurial efforts.

Among these is Keren Brown Wilson, who started the first assisted living home in Oregon in 1980s. It caught on like wild fire, of course. And there’s Bill Thomas at the Chase Memorial Nursing Home in New Berlin, New York. After wrangling with a lot of red tape, he brought birds, dogs, cats and a garden into the daily lives of the people in this nursing home.

Harvard-trained and a “serial entrepreneur,” he “put some life” in the nursing home and people who hadn’t spoken started speaking, while others started walking. “The lights turned back on in people’s lives,” writes Gawande. It was like “shock therapy” for everyone involved. The number of prescriptions dropped by half and deaths dropped by 15 percent. “The most important finding was that it is possible to provide [people] with reasons to live.”

In the United States, 25 percent of all Medicare spending goes to the 5 percent of patients in the final year of their life and most of that money goes for care in the last couple of months. Whereas the hospice mission conveys a different message: Live for now, not for what may be possible with more risky surgeries, chemotherapy and radiation.

Decision-making is very difficult, with 63 percent of doctors overestimating their patients’ survival time on average 530 percent of the time. And 40 percent of MDs admit to offering treatments they know are unlikely to work.

“Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives— and they lived 25 percent longer.” It’s Zen, says Gawande. “You live longer only when you stop trying to live longer.”

Rae Padilla Francoeur’s memoir, “Free Fall: A Late-in-Life Love Affair,” is available online or in some bookstores. Write her at rae.francoeur@verizon.net. Read her blog at freefallrae.blogspot.com or follow her @RaeAF.

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