They finally signed a “Do Not Transfer” order. The patient’s family had been reasonable enough, but they lacked medical expertise, and no one at the nursing home ever mentioned that an acceptable option could be to let a 92-year-old man live out his days, unencumbered by transfers to the emergency room for every attack of constipation or exacerbation of chronic pain.
Not that he had been in the nursing home for very long. Until recently he had been living with his equally elderly wife in an apartment in a suburban retirement community. This housing complex for retirees – “Your choice for active senior living” – included a floor for skilled nursing, and he probably could have moved there some months earlier. But these decision are complex: his wife prided herself in the care she took of him, from rubbing salve on his skin to filling his pillbox, and his children worried that Mother would spend all of her time sitting on the nursing home floor if Dad moved there. And besides, the skilled nursing floor cost a whole lot more.
The patient had had a remarkable life. As a B17 bomber pilot in World War II, he was shot down and taken prisoner. He had always had a knack for art and cooking, so as prisoner of war, he took otherwise inedible scraps of bread and grain and invented a new breakfast cereal for his fellow prisoners which he marketed through personally-designed posters. The breakfast cereal was a smashing success, a prison camp favorite, and it provided needed calories to otherwise hungry soldiers. He went on to receive the Purple Heart. After release from the prison camp, he became an internationally-renown commercial artist and graphic designer. He also continued to cook.
We had not had a visit in a long time, but the family stayed in close communication with me regarding his medical problems and I often provided counsel over the phone. Nothing surprised me about his medication list: a touch of high blood pressure, the obligatory enlarged prostate drug, and some pain pills, which he had been on in some form since his two plane crashes during the war. At some point a psychiatrist (I presume) put him on a low dose antidepressant. As it became increasingly difficult for his wife to keep the pills in order, we arranged for a visiting nurse and a home health aide. And after several falls and with the onset of worsening sleep patterns, the decision was made to transfer the patient to the nursing floor.
He was there for 48 hours when I received an urgent phone call from his eldest daughter; he had been taken to the emergency room.
“Why?” I asked.
“Well, he seemed to have passed out several hours earlier. And after a few minutes he came to. But the nursing floor staff were so upset that when the doctor came to make rounds that afternoon, he suggested that he go in to the hospital to be checked out. And well, he is there now. But as you know, he has had nine of these episodes in the last three-and-a-half years and every time the doctors haven’t found a thing. I just don’t know why he is there. They won’t do anything for him anyway, and I just hate that he is separated from my mother.”
As we talked, it became increasingly clear that the medical system was not functioning in a manner that met the goals of either patient or family. The patient wanted to be out of pain and eat ice cream with his wife. The children wanted their father to move his bowels and have adequate pain relief (“poop and pain free” as his daughter explained on the phone to me that night). As an internist, who has walked with patients and their families through the obstacle course of aging, I have witnessed elderly patients dying in the hospital, isolated from their families, pursuing goals of the system’s making, dying deaths of the system’s choosing. Since I could think of nothing that my grandfather would want less than to die in this way, I encouraged my aunt to complete the paperwork to allow Grandpa to live out his days free of the threat of hospital transfers. And he is. And enjoying his ice cream to boot.
Lydia S. Dugdale, M.D., 35, is an assistant professor of medicine at Yale School of Medicine.