Tomorrow is Health Care Decisions Day, part of a national campaign to encourage Americans to complete their advance directives or living wills and document their desires regarding medical treatment at the end of life.
I will spend the day thinking about my father-in-law and how the wishes outlined in his advance directives continue to affect our family a month after his death.
My father-in-law was a lifelong educator, a gentle Latin scholar and former school head. That he also possessed cinematic-grade good looks seemed irrelevant to him. Instead, his greatest delights were, in descending order, his family and friends, word games and reeling off a good story, the quality of which could be judged by the wryness of the final one-liner. Even as he suffered from dementia, my father-in-law retained his ability to deliver the unexpected zinger.
Earlier this year at his skilled nursing facility, after joining one of two teams involved in a spelling bee, a staff member asked him what he wanted to name his team. He looked up at his elderly, slightly glassy-eyed comrades, then surveyed his opponents.
"The Winners," he answered, with a slight smile. "Our name is 'The Winners.' "
But there were no witty quips that morning four weeks ago when he woke up with a cold left arm. Later, in the hospital, surgeons would tell us that he had a clot in the arm's main artery, as well as multiple clots in other arteries. With these pathways for oxygenated blood obstructed, my father-in-law's arm, part of his spleen and a small segment of intestine were dying. Without multiple surgical interventions, the dying organs would soon release a torrent of toxins into his bloodstream. The tingling, numbness and slight discomfort he was complaining about would eventually give way to excruciating pain.
Even with my experience of having cared for patients in similar situations, I wanted at first to believe, against all odds, that my father-in-law's course might be different. It seemed easier that morning to take the responsibility of deciding to do something, to proceed with an operation, than it was deciding not to intervene.
But was it right to count on the small chance that he might survive such an operation, when in fact it was more likely that our interventions would leave him languishing in an intensive care unit and returning over and over again to the operating room?
As it turned out, none of his family had to brood over the decision for long. In his gentle, understated way, my father-in-law had lifted the burden of that choice from his family's shoulders years earlier. In the folder of papers that he carried with him to the hospital were the advance directives that spelled out how he wanted to live and that recapitulated conversations he had had with his children years ago about the inevitable end of his life.
My father-in-law completed those documents with the hope but not the assurance that they would actually influence the end of his life. In fact, not even experts in end-of-life care could have assured him or predicted whether his living will would have made any difference. While advance directives have been around for almost 40 years and have been federally mandated in all Medicare-certified institutions for two decades, there has been no research to show that patients with living wills actually end up dying in a way that is consistent with their wishes.
Researchers at the University of Michigan in Ann Arbor combed through the records of over 4,000 individuals over age 60 and found that almost a third of these patients would eventually become too incapacitated to make the necessary decisions regarding medical treatment at the end of life. But among them, nearly all of those with a living will requesting limited or comfort care only ultimately did receive such care at the end of their lives. And those patients who specified all care possible were far more likely to receive aggressive care than those who did not request it.
"We need to take the initiative to document decisions seriously," said Dr. Maria J. Silveira, lead author of the study and an assistant professor of internal medicine at the University of Michigan. "Every person who comes through the door at age 60 or above has a significant chance of losing decisional capacity."
The number of individuals with living wills has increased steadily over the years; still, fewer than half of the patients in the study had one. Without such documents, patients remain vulnerable even if they have already had end-of-life care conversations with a physician. "We live in a time where care is very fragmented," Dr. Silveira said. "You can't be sure that the doctor who has the conversation with the patient is the same doctor who will care for the patient in the hospital or in the nursing home."