An excerpt from At Peace by Samuel Harrington MD
“Death is very likely the single best invention of life. Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big decisions in life.”
The seeds for this book were planted in 2009. I was sitting in my father’s sunlit apartment overlooking the vast expanse of Lake Michigan. He was 88 years old and the picture of health for his age. We were discussing treatment options for a ballooned blood vessel, an aortic aneurysm, in his abdomen. His internist had recommended a surgical consult and three separate surgeons had recommended a standard operation to permanently repair it. I expressed concern that despite his appearance of good health, such a taxing abdominal operation and the associated prolonged recovery threatened to upset his independent lifestyle. Worried about the risk of rupture and wanting him to live long enough to meet his first great grandchild, whose birth we expected in six months, I was promoting an alternative outpatient procedure – the insertion of a strengthening stent designed to reinforce the aneurysm for up to five years.
My father stunned me with a question that crystallized many ideas that I had been pondering over the last few years of my medical practice. “Why would I want to fix something that is going to carry me away the way I want to go,” he asked? Apparently he had the generally accurate impression that if his aneurysm ruptured, he could demand pain medication, decline emergency surgery, and be dead from internal bleeding within a few hours – a day or two at the most. His message was that he did not want a lingering death and a ruptured aneurysm held an intellectual appeal for him in that regard.
More importantly, his question resonated on multiple, more complicated levels. First, it demonstrated a vision of his death that we, he and his family, could use to make future end-of-life decisions. Second, it demonstrated a willingness to gain knowledge about his ailments. Third, it indicated an acceptance that death was inevitable and that having a plan – a strategy – to manage it gave him some semblance of control. Finally, his question taught me to challenge the advice physicians, including myself, reflexively give patients late in life.
Ultimately, my father had the outpatient procedure I advocated and he met his great granddaughter soon after her birth.
A year later, I was speaking with my older sister on the phone. She was preparing to visit my dad and concerns about his health were weighing on her mind. She was bracing herself for her role as the oldest daughter. She was preparing herself to nurse him where necessary but more likely to organize his remaining time according to his frequently stated wishes to die at home. Do not let him be sent to a nursing home. “You can’t believe the wreckage in those places,” he repeated. No excessive medical care for him, thank you very much. She would create an assisted living situation in his apartment. We would protect him as best we could.
Our mother had died three years earlier. We had thought our father would wither and die. Contrary to our expectations, he soldiered on. But now, one year after his aneurysm treatment, his rugged independence was feeling threatened and death was on his mind. Had he experienced a premonition? He wanted to visit with his daughter.
“What if,” type questions poured forth from her? Channeling his willingness to forego treatment if it meant a manageable death, I answered her.
“What if he has a stroke?” she asked.
“Call me,” I replied.
“What if he gets pneumonia?”
“What if he falls?”
“If he is injured or in pain, call 911; otherwise, call me.”
“What if I come in and find him dead in bed?”
“Wait until he is cold and blue, then call 911.”
“OK, I can do that.”
Little did we know that he would live another five years.
This is a book about exit strategies. It is, indeed, another “End-of-Life” book. It is not about making the end of life good. It is about making the end of life less bad. It is not about extending life. It is not even about extending “high quality” life. It is about avoiding a painful dying process and futile medical care. It is not a philosophical treatise about what makes life worth living. It is simply a practical look at declining health; old age, progressive debility, and practical choices that people can make to minimize the likelihood of the unconsidered death and to maximize the likelihood of a “better” death.
This book is not about physician-assisted suicide, medical aid in dying, or “death with dignity,” although I will mention them in Chapter 12. It is about developing a vision for a natural death – a death caused by disease or old age but not influenced by the violence of excessive medical technology.
This book is not going to dwell on ethical arguments for or against end-of-life choices, but I will state the ethical position responsible physicians take regarding life-sustaining treatments. It is the duty of the physician to sustain life and relieve suffering. When the performance of one responsibility conflicts with the other, the physician must defer to the patient’s wishes.
This book is not about control. I understand that to suggest that we can control our deaths is simplistic and borders on falsehood. All deaths represent a loss of control. We can lose control to the natural history of old age and disease or we can give up control to doctors and their therapeutic interventions. We can never keep complete control.
Finally, this book is about acceptance. That acceptance is not limited to the emotional acceptance described by Elisabeth Kübler-Ross as the fifth stage of loss and grief in her 1969 book “On Death and Dying.”[i] That emotional component is part of it, but I also encourage acceptance based on knowledge and understanding.
The goal of this book is to outline disease processes or trajectories and to emphasize choices that minimize the chances of a medicalized death and maximize the chances of a better death.
By disease trajectory, I mean the average course of illness for a given diagnosis. By medicalized death, I mean the state of a semi-conscious patient in an ICU or nursing home that is subjected to medical treatments beyond their direct wishes or beyond common sense. Therefore, the restated goal of the book is to use the knowledge of disease trajectories to choose a point in the disease process at which one considers stopping aggressive treatment and recognizes that palliative treatment is likely to offer a better outcome.