“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.” (Being Mortal, Epilogue)
Being Mortal : Medicine and What Matters in the End (2014) is a meditation on what it means to “live well” near the end of life. Not just to survive, not just to be safe, not just to stay alive as long as medical technology allows, but how to decide for ourselves and help others—our family members, our loved ones, our patients—decide for themselves what living well truly means.
Released October 2014, the book is by Atul Gawande MD, MPH, an American surgeon, author, and public health researcher. A leading thinker about healthcare in the United States, Gawande is well known for the bestselling book, The Checklist Manifesto: How to Get Things Right, which examines the importance of organization and pre-planning (using tools such as thorough checklists) in both medicine and the larger world.
I confess: I am a huge fan of Gawande, and when he publishes a new book, I rush to read it. I appreciate his clear, conversational writing style, which enables him to describe complex and potentially dry ideas in an interesting and entertaining way. Despite all his accolades and degrees, he is humble and writes openly of his personal experiences—especially his failures, the source and spur for his ideas.
Gawande describes how the idea for Being Mortal sprouted as he watched his elderly father (also a surgeon) go through a steep decline in his health and eventual die. He realized that in all his medical training he was never taught about helping patients with managing the aging process or address end-of-life concerns. Death was the enemy that medicine fought against, he writes.
The first half of Being Mortal examines aging, and what we do when we can’t function without assistance at home any longer.
All of us get older. Decline will come. Human biology wills it. We all hope it will come fast, that we’ll be living independently and functioning normally into our advanced years, and then suddenly (but peacefully) we will one day die. Unfortunately, this is not the usual trajectory. Aging usually involves a slow process of numerous losses. We lose our eyesight, our driver’s licenses, our ability to go to the bathroom alone, and then our home.
“It is not death that the very old tell me they fear,” Gawande says in chapter 3. “It is what happens short of death – losing their hearing, their memory, their best friends, their way of life.”
Through intimate stories he relays the current living choices the elderly have: the dreaded nursing homes and the history behind the current nursing home system; the history of assisted living (including a profile of Oregon’s own innovator in this realm, Keren Brown Wilson) and why current assisted living options are not living up to their hopeful beginnings; and alternative “aging in place options” (akin to Portland’s Eastside Village.)
The point Gawande makes is that there are creative examples of making elder living more humane: allowing pets, providing privacy, letting residents make their own decisions even the wrong ones, i.e., an occasional cocktail for a diabetic. As one innovative nursing home director says to him (chapter 5), “They still get to make poor choices for themselves if they choose.”
One core idea he develops is that for most of us autonomy and independence are crucial requirements in our desire to go on living. This means creating successful elderly living spaces involves “help(ing) people within a state of dependence sustain the value of existence.” Making lives meaningful “requires more imagination and invention than making them merely safe does.” Or to paraphrase Keren Wilson: we want safety for others but autonomy for ourselves.
The second half of Being Mortal is about the dying process, and how we make choices as the end of life approaches.
Death now for the elderly in the United States usually occurs in a hospital. Modern medicine can postpone death for days and weeks by employing ventilators, feeding tubes, and other extreme measures. Gawande notes that nearly 25% of all Medicare spending—roughly $145.7 billion—pays for the care of patients who are in their final year of life, about 5% of total recipients, even though the quality of life in those last few weeks is often poor, and many patients express priorities above simply prolonging their lives (chapter 6).
He eloquently weaves multiple stories, with heart-wrenching details, about the choices people make as death approached. Some accounts are very personal (his father, his daughter’s piano teacher), but many describe patients he has cared for as a surgeon. These detailed stories of modern American death are all told deftly, humanely, and with their complexities, emotions and difficulties intact.
Gawande also humbly tells of learning about palliative care and hospice (about which he was never formally taught), and eagerly adopting strategies recommended by Dr. Susan Block, Co-Director of the Harvard Medical School Center for Palliative Care. When discussing end-of-life care, Block advises patients and families to ask themselves:
- What do you understand your prognosis to be?
- What are your concerns about what lies ahead?
- What kinds of trade-offs are you willing to make?
- How do you want to spend your time if your health worsens?
- Who do you want to make decisions if you can’t?
Block tells the moving story in chapter 6 of realizing, just as her father was about to undergo a difficult neurosurgery, that she didn’t know her own father’s answers to these questions. “We had this quite agonizing conversation where he said – and this totally shocked me – ‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’”
It turned out this information was critical because Block’s father did have complications during the surgery, and she had to decide if the doctors should proceed with an additional surgery that could result in him being quadriplegic.
As Gawande recounts, “She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the okay to take him back to the operating room. ‘If I had not had that conversation with him…my instinct would have been to let him go at that moment because it just seemed so awful...But there was no decision for me to make.’ He had decided.”
Her father lived for ten years after this operation, with his mind intact and partial use of his hands.
Block’s story and others’ accounts lead Gawande to muse in the Epilogue, “[O]ur most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”
- Atul Gawande, FRONTLINE, PBS, February 10, 2015.
- Atul Gawande, Think Out Loud , Oregon Public Broadcasting, October 21, 2014.
- Atul Gawande, TED talk, “How do we heal medicine?”, March 2012.
- The Conversation Project, a website dedicated to helping people talk about their wishes for end-of-life care.
- Oregon Advance Directive, a legal document that protects your right to refuse medical treatment you do not want, or to request treatment you do want, in the event you lose the ability to make decisions yourself.
As a primary care provider at the Eastside office, Joan Nelson, MPH, PA-C, is an advocate for your overall health, recognizing that health involves much more than office visits and acute medical issues. "I see health as the ability to reach a state of complete well-being: physical, mental and social," she says. Joan's practice is open and she welcomes patients of all ages!