Helping my father die
PAROLED LAST month, Dr. Jack Kevorkian was never an attractive poster child for dignified and comfortable deaths for the terminally ill. That's too bad, because Kevorkian was on to something important: the confusing difference between so-called "comfort measures" (giving medicines like narcotics only to treat pain, but not cause death) and "euthanasia" (giving medicines that purposely hasten death) for terminal illness. In every state except Oregon, the former is acceptable -- even mandatory -- while the latter is illegal.
Yet as almost any physician caring for the desperately ill knows, this distinction is often meaningless. As a result, doctors and families facing death are often stranded with little legal or ethical guidance.
Based on centuries-old Roman Catholic theology, enshrined in clinical guidelines from medical groups such as the American Medical Association, and supported by the unanimous 1997 US Supreme Court decision Vacco v. Quill, the "doctrine of double effect" states that morally good actions (like giving lots of morphine to banish terminal cancer pain) are acceptable even if they cause morally bad outcomes (like causing patients to stop breathing and die). Call it the Good Intentions Clause. A doctor can't aim directly at killing a patient; he or she may allow death only as a side effect of pain treatment.
Unfortunately, what seem like comfort measures to one doctor would be certain euthanasia to another. This argument recently occurred over my own father in a hospital intensive care unit.
Afflicted with a rare, progressive scarring disease of the lungs, my father suddenly deteriorated one day and was hospitalized on a ventilator. Over weeks, my family endured repeated setbacks, as his lungs filled with fluid, his kidneys failed, and his heart weakened. His blood became acidic. Soon, fungus infected his bloodstream. His body ballooned, as if inflated with fluid. Doctors continuously infused intravenous narcotics to deeply sedate him and paralyzing agents to prevent any reflexive movements.
His only hope for survival, a lung transplant, was deemed pointless and his name was removed from the waiting list. After weeks, the medical team said that my father's condition was "not consistent with long-term survival." With great sadness, our family agreed that further treatment was futile.
A thorny problem arose: How should my father be allowed to die? The most humane thing would be to just turn off the ventilator. Unfortunately, that wasn't allowed since my father was artificially paralyzed. According to the doctrine of double effect, infusing paralyzing agents without artificial ventilation is illegal euthanasia. Paralytics, after all, don't treat pain but just prohibit all movement, like breathing or reflexive limb thrashing.
The doctors said we'd first have to stop infusing the paralyzing drugs, and then wait hours or even days as my fathers' failing kidneys tried to excrete what was already in his body. Only then could the ventilator be switched off. This plan would require my father to die much more slowly, increasing the chance that he might suffer.
I recently related my father's scenario to Dr. Timothy Quill, the professor at the University of Rochester Medical School who battled the New York attorney general to overturn the state's ban on assisted suicide, but ultimately lost the 1997 Supreme Court case that bears his name. He had no easy answers. "It makes no sense" to split hairs, he agreed. Many doctors skirt the doctrine of double effect to help families, he says, and learn the lingo to write notes in the chart that avoid the appearance of euthanasia. I've talked to many doctors who've bent the rules off-the-books in situations like my father's. It's thus no surprise that an anonymous 1995 survey of critical care nurses found that about 1 in 6 participated in "active euthanasia or assisted suicide."
In the end, the premise -- and the fundamental problem -- of the double-effect doctrine is that death is always considered a bad thing. That's why it must always come unintentionally, as a by product of the presumably more moral goal to banish pain. But for my father death would mean rest, or shanti, in the Hindu-Jain tradition. For many people, death is not necessarily evil.
And so we met with my father's doctors and agreed on a plan. On the day we decided to let my father die, our family filed into his room. Some prayers were said. The monitors were silenced. The doctors shut off the infusion of paralytic drugs, and injected a large dose of narcotics. The paralysis would still last for several hours. With a knowing nod to us, the attending physician then left the room and my father's nurse lingered behind.
She met my eyes and then my sister's. Both physicians, we nodded back knowingly. Then the nurse reached over to the ventilator, and in an act of compassion for which I will remain forever grateful, she quietly turned the machine off.
Dr. Darshak Sanghavi is an assistant professor of pediatrics at UMass Medical School and the author of "A Map of the Child: A Pediatrician's Tour of the Body."