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Posts Tagged ‘mortality’

I’ve heard great things about Atul Gawande‘s books, but hadn’t read any of them. My dad sent me and my brother each a copy of Being Mortal: Medicine and What Matters in the End so we can have a conversation about how he’d like things to be if he reaches a point that he can’t care for himself and what he’s prefer the end of his life to be like. Gawande notes that many people avoid this kind of conversation.

Gawande explains why this matters by telling stories of patients and his own family members facing such decisions. He also briefly outlines the history of aging and dying, and the state of geriatric care (not great) at the time of his writing in 2014. It turns out, like so many other things about healthcare in America, this situation is mainly caused by money, and yet investing in more geriatric specialists or at least training in geriatrics for doctors and nurses would improve health outcomes and save money. As Gawande notes,

“If scientists came up with a device — call it an automatic defrailer — that wouldn’t extend your life but would slash the likelihood you’d end up in a nursing home or miserable with depression, we’d be clamoring for it. We wouldn’t care if doctors had to open up your chest and plug the thing into your heart. We’d have pink ribbon campaigns to get one for every person over seventy-five. Congress would be holding hearings demanding to know why forty-year-olds couldn’t get them installed. Medical students would be jockeying to become defrailation specialists and Wall Street would be bidding up company stock prices.”

Just after the study came out, however, the university where the doctors worked closed the geriatrics department. There is a shortage of geriatric specialists — because this is not a profitable specialty for the corporations that run hospitals and medical practices — even as we have an aging population. Gawande points out similar information about hospice care, and about supportive services that help seniors stay in their homes. These things all improve quality of life, well being, and mental health for both seniors and their family members, result in fewer invasive medical procedures, emergency room visits, hospital stays, etc.

Besides discussing these unpleasant aspects of our health care system, and the way the vision of the founder of assisted living was abandoned to economic efficiency and legal protections, Gawande also tells some very inspiring, and even sometimes funny, stories about people who have attempted to reform the way we care for the elderly. Like the Eden Alternative, which simply introduced cats, dogs, birds, and children into a nursing home with terrific results, and its offshoot, the Green House project. And NewBridge, a community in the Boston area where people live in private rooms with communal shared spaces. And Peter Sanborn Place, a housing project for disabled and senior citizens where the remarkable director created her own version of aging-in-place supportive care so that her residents could have full lives.

As Gawande learned all this, he came to change the way he talks with patients himself. He credits a palliative care professional, Susan Block, with teaching him to ask patients, “What do they understand their prognosis to be, what are their concerns about what lies ahead, what kinds of trade-offs are they willing to make, how do they want to spend their time if their health worsens, who do they want to make decisions if they can’t?” Block notes that the purpose of these conversations isn’t necessarily to learn people’s last wishes or determine which treatment options to pick, but rather “to learn what’s most important to them under the circumstances.” To help them “negotiate the overwhelming anxiety” that comes with “arriving at the acceptance of one’s mortality and a clear understanding of the limits of medicine.”

With these conversations, which Gawande acknowledges take time and skill, he envisions a cultural shift from the mindset that medicine should fix everything. He counsels courage, “. . . to seek out the truth of what is to be feared and what is to be hoped.” And, “to act on the truth we find.”

This is an excellent, if difficult read. It may make you angry at the systems we have erected in our society that prioritize profit instead of people. But it will also give you hope, that there are people within those systems working to make a difference. And it will give you tools to empower yourself and your loved ones when you find yourself facing mortality.

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