The form sat on my desk all morning. I glanced at it now and then, sighing slightly each time. Then about 3 in the afternoon I had a window of time.
I sign death certificates about half a dozen times a year. Sometimes whole seasons will go by without any, and then 3 or 4 in a single week. While I’m not often present when one of my patients die—some die at home or in a nursing home, some in accidents, or in the ICU. But I know their stories and how they die is rarely a mystery to me.
This patient was a man, 56—young to my mind—who participated actively in his own demise. Not a suicide—unless you consider unhealthy life habits a form of suicide, which in many ways, they are: poor diet, excessive alcohol, unsafe sex, smoking, drugs, inactivity; all are drivers of death.
Jimmy was a regular guy—lived in a house by himself in the woods. Independent, “didn’t take nuthin’ from nobody,” as an old friend used to say. He smoked, he drank. He chopped his own wood for his wood-burning stove.
Jimmy had been married once upon a time, and it’s not hard to imagine why he was divorced. Perhaps it was his “do-it-myself” nature, or his unhealthy habits or as he used to say, his “manly ways,” code for his bullheaded thinking. When I met him less than a year ago, he had an ex-wife, an adult son and daughter and several long-gone dogs.
He showed up on my schedule a few months ago, worried about a cough he had developed. Now he was used to coughing with his pack-a-day habit of several decades’ duration. But this cough seemed different to him in light of a smoking buddy of his who had recently been diagnosed with esophageal cancer. He was worried he might have it too. Fortunately, he did not have issues swallowing or other unexplained symptoms. So I was not surprised that his esophagus was cancer-free when examined.
But the varices were a different matter. These are enlarged blood vessels—like hemorrhoids—in the esophagus of a drinker who is on his way to a poor outcome. His blood tests later would show just how badly his liver was faring, but he was so glad about the cancer-free diagnosis that when he got home it’s pretty clear he binged. For a while.
Because less than a month later he showed up on my schedule again. And now this usually slender regular guy had a swollen abdomen and belly pain that he didn’t understand at all. Physical exam revealed a swollen, tender liver. Ultrasound showed both the enlarged liver and the development of fluid in his abdomen known as ascites.
I sent him to the hospital for evaluation and possible removal of the fluid collection. Unhappily he went. Within 24 hours he felt better so he announced he was leaving to go home, before all the planned tests and evaluation were complete. When patients choose to leave prior to completing evaluation, this is known as “leaving AMA” or “leaving against medical advice.” We discourage patients from leaving AMA for the their own safety—often they return much more ill than when they left. And some die before they can return.
Jimmy left AMA several times. Sometimes he would go home and drink. Sometimes he would end up in my office and I would try to talk him into staying long enough to get all the treatment he needed. The last time he was admitted the liver specialist told him his life expectancy was less than two months.
He disliked all this doctoring and decided that he had had enough. He elected hospice. He went home and the hospice team visited him the next day to support him through this process. His ex-wife and adult children were also there. He enjoyed a shower with the help of the nursing aide and was helped into bed. He died that night.
The death certificate has line items that must be filled: what was the cause of death and what were the conditions that led to the final event—for example, heart disease leads to heart failure leads to cardiac arrest and death. But in this case one could argue that while liver failure caused the death, the condition that led to it was orneriness.
Was he expressing self determination or self annihilation? There are so many ways to leave this world, some we can have hand in, some not. The death certificate, though, is only a record of our physical state surrounding our demise. It does not document the emotional turmoil that accompanied us there.