How a boomer came to “Steep myself in death”

One movement that has come along during the prime of our baby boomer generation is the movement to give people options about how to handle the end of their lives. And one of the prime movers behind it is Barbara Coombs Lee of Portland, Oregon, who has become a national advocate as the head of Compassion and Choices. In this Boomer Opinion piece exclusive to BoomerCafé, Barbara explains how she got so involved — what people call “steeping herself in death” — and why.

As a nurse, intensive care units and emergency rooms were my specialty. I expertly deployed tubes, needles, and technological devices to save patients, and undertook rescues like cardiopulmonary resuscitation without thinking twice.

Until the night in a coronary care unit that changed everything.

In her role as advocate, Barbara Coombs Lee (right) gives testimony in the court case Morris v. New Mexico with oncologist Dr. Katherine Morris (center) and patient plaintiff Aja Riggs (left).

Ed’s end-stage heart disease had brought him to our unit so frequently that we had developed a real friendship. The night his heart succumbed to a fatal arrhythmia, I did what I was trained to do: grab the defibrillator paddles, apply them to his chest, and push the button.

Ed cried out as the electric shock rocked him in his bed and woke him up. He was stunned and angry.

“Why did you do that, Barbara?” he shouted. “Don’t you ever do that to me again.” Little did I know that Ed and his family had made peace with his fate and no longer wanted any extraordinary measures to artificially extend his life and his suffering.

I tearfully apologized, and Ed forgave me. But that night, I began my journey of accepting that heroics and technological interventions were not always what a person wants at the end. In fact, with my new awareness, I recognized that these interventions rarely extend life to any meaningful extent. And too often they disrupt both a person’s chance for a peaceful dying and gentle acceptance for their family.

This realization sent me on what became a lifelong quest to help make a peaceful death accessible to everyone on their own terms. At age 40, I went to law school at night to learn public advocacy. Years later, I became a national advocate for patient-directed, end-of-life care as the head of Compassion & Choices. It became the leading national organization working to ensure autonomy and expand options for people at the end of life.

Barbara signing books.

Now, at age 71, my journey has culminated with my new book, Finish Strong: Putting Your Priorities First at Life’s End. It is a clarion call for agency and self-determination at the end of life. I’ve poured my decades of advocacy and countless patient encounters into this book, and it’s aimed especially at our generation, the ever-independent baby boomers, as we enter the common age of retirement in droves.

I’ve been pleased to note a recent upsurge in “woke” articles like Emily Gaffney’s “Time for a change when we die,” which ran on BoomerCafé last November. It will take millions of individuals like Emily holding candid conversations with their doctors and expecting care that is patient-directed — not handed down from above — to transform our swollen medical system. Luckily, I happen to know a certain group of 72 million motivated individuals called baby boomers.

Barbara Coombs Lee

Over the years, many of my fellow boomers have asked me, “Why would a healthy, vibrant person like you choose to steep yourself in death?”

My reason is simple. I believe that death is an essential and ever-present element of our human condition. I believe living and dying don’t fall into a clean binary. And I believe we all deserve a home stretch that’s in keeping with the values and priorities of the lives we’ve led. My mission is to help people achieve that.
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Barbara’s book is “Finish Strong: Putting YOUR Priorities First at Life’s End.”

3 Comments

  1. Well said! In 2013 I watched my ordinarily vital and independent 92 year old father, die a slow and painful death in a hospital, undergoing treatment for bladder cancer. If his medical team had confirmed to us that he was dying, instead of pretending the treatment would extend and improve his condition, the outcome would have been what he wished for, a dignified and timely end of his life! In the five years since then I’ve educated myself on the end of life process and accepted a better death for myself. I just wish I could have done the same for him. I’m reading ‘Being Mortal’ which is excellent and supports your point of view!

  2. Jeanette — Thank you for sharing your father’s story. I tell a similar story of my own father in Finish Strong. Sadly, similar stories play out in hospitals every day. The best we can do with these stories is to use them to alert others to the hazards of the treatment conveyor belt and build an attitude of curiosity and empowerment. We must learn to ask more questions of our doctors. I believe only we can change the dominant model of aggressive and brutal treatment to the end. The medical community needs our help to change, but we can do it!

  3. Excellent article and the words: ‘The best we can do with these stories is to use them to alert others to the hazards of the treatment conveyor belt and build an attitude of curiosity and empowerment. We must learn to ask more questions of our doctors. I believe only we can change the dominant model of aggressive and brutal treatment to the end. The medical community needs our help to change, but we can do it!’

    Of course the difficult part is to get the medical establishment to actually LISTEN to us. How do we bring them down a peg or two to our level after 4-5-6 years of medical school where they seem to have been taught that Death is a Medical Failure and that there is a pill, potion or procedure out there to ‘save’ us – no matter the misery that extended life gives us.

    Perhaps it is different in your country but in the UK Doctor still ‘knows best’ unfortunately, and we are still far far to reverential and, dare I say, sometimes almost frightened to put our case forward for fear of irritating the doctor. I know many people who just do what the Dr tells them because they feel so vulnerable and fear some kind of backlash if they question. Sad but true.

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