Monday Author: Susanne Skinner
At the beginning of January I was slogging through our non-fiction book club selection, A Nation in Pain, by Judy Foreman. I desperately wanted to finish this book because it addresses one of the most discounted aspects of becoming a doctor, managing pain. Foreman exposes the inadequate education and understanding medical schools offer doctors. Palliative care—preventing and relieving suffering—is overlooked in the curriculum and in the way medicine is practiced in the United States.
It’s a hard read, but worth the understanding it offers. I was doing it in small doses, alternating it with lighter fiction, when one of our boys and his lovely girlfriend dropped in. Both are in the medical field and immediately noticed what I was reading, having read it themselves. Acknowledging the difficulty of the subject, they suggested I also read Being Mortal, by Dr. Atul Gawande. It’s a book about dying, but doing it on your own terms.
Being Mortal became one of the most important books I will ever read.
As primary caregiver to my elderly father and mentally disabled sister (both with dementia) I felt my responsibility was insuring their health and continued survival, but Dr. Gawande set me straight. He said neither is possible without enabling their well-being—providing both with the pleasure of doing what they love for as long as they can. My real job is ensuring they never become disconnected from who they are.
Red Pill, Blue Pill
Atul Gawande is not a lightweight when it comes to confronting terminal illness. He has a distinguished career as a surgeon, writer, and public health researcher, practicing at Brigham and Women’s Hospital in Boston, Massachusetts. He is also a professor in the Department of Health Policy and Management at Harvard’s School of Public Health and Professor of Surgery at Harvard Medical School.
He has revolutionized how a doctor should tell a patient they are dying and determine the next steps. His format is a simple but difficult conversation:
- What is your understanding of the situation and its potential outcomes?
- What are your fears and your hopes?
- What are the trade-offs you are willing and unwilling to make?
- What is the course of action that best serves this understanding?”
There was a time when a doctor’s diagnosis was rarely questioned. If he told you to take the red pill because he thought it was your best option, you were never informed about or offered the option of a blue pill.
As medicine progressed that approach changed. Doctors began presenting the pros and cons of both pills but, if asked, deferred an opinion. They encouraged the patient to consider what was most important to them, knowing neither option is what the patient wants to hear.
Dr. Gawande believes by asking the four questions above, he can understand enough about his patient’s goals to have a discussion on the merits of the red and the blue pill, recommending the one that will help them achieve those goals. In the end, the patient decides.
The Challenges of Aging
We live in a country of over-treatment and over-diagnosis, where quantity has replaced quality. With all of their training, doctors still struggle with how to tell a patient they are dying, with no further treatments to be had. The focus becomes the illness; the importance of the patient and family are diminished.
Medicine is designed to improve our lives but it can also help us process its ending. Knowing when, where and how to draw the lines is the hardest part of aging. Doctors who are committed to extending life often prolong suffering by continuing to prescribe treatments that, in the end, rob the human spirit of dignity and quality of life.
Dr. Gawande advocates that to fight the battle well, “You don’t want Custer. You want Robert E. Lee… someone who knows how to fight for territory that can be won and how to surrender it when it can’t.”
Death is inevitable and requires two kinds of courage: the courage to face our own mortality and the courage to act upon that knowledge. Each of us imagines we have more time than we do and if we live long enough the by-products of age—frailty, debilitating and terminal illnesses—must be confronted, no matter how hard we try to resist.
Being Mortal and A Good Death
Quality of life is the most discounted metric in the aging process, followed by healthcare systems that continue to financially and emotionally fail patients and their families. They offer expectations of medical technology that aren’t realistic or even possible, but proceed as if they are. Having the courage to think and talk about death and the alternative options of palliative care need to be included when decisions are being made.
In their quest to prolong life, doctors overlook the human element and their ability to heal with compassion; using medicine to comfort and smooth the end-of-life journey for patients and families. This is the focus of Dr. Gawande’s writing. As I read it, thinking of my father and my sister, I suddenly began thinking of myself. I am also going to die and I want a good death.
There is hard thinking in this book but the fact is we are mortal and we all die. We plan so many things in our lives yet somehow over look this very real and final episode. How we die is something each of us should invest in, yet it often remains unspoken and undone. Understanding our options means doing it on our own terms.
We may not know when we are going to die, or even how, but by having these difficult conversations we are given the opportunity for a good death—the ability to remain connected to who we are and to write the ending to our own story.