|(DAN PAGE )|
A (good) death panel
When Ivan, a successful 45-year-old attorney, realized he would never recover from his illness, he thought things couldn’t get any worse. Things got worse. His pain became uncontrollable. His wife and children, frightened by Ivan’s groans and gaunt appearance, withdrew from him. Friends and colleagues stopped visiting. His doctors gave up hope. Finally, feeling entirely alone, Ivan died.
Ivan was not a patient of mine — or anyone else’s. He’s the title character of Leo Tolstoy’s novella “The Death of Ivan Ilyich.’’ Though it first appeared in 1886, “Ivan Ilyich’’ couldn’t be more relevant to our current national conversation about dying. Everyone would agree that Ilyich, isolated and suffering, died a bad death. What’s become more controversial is the role medical professionals and the government should play in helping people avoid Ivan’s fate.
This controversy took a heated turn last year when Congress debated health care reform. One provision, scrapped from the new law but later proposed as a Medicare regulation, was payment for what’s called “advanced care planning.’’ Clinicians would be reimbursed for advising patients older than 65 of their potential treatment options in the event of a life-threatening illness.
Opponents of this provision felt it represented too much intrusion by the government into personal decisions about health care. Talk of “death panels,’’ in which bureaucrats could “pull the plug on Grandma,’’ inflamed the debate.
The truth is, though, that opponents of this aspect of health care reform are not the only challenge doctors face in improving how we take care of people at the end of their lives. Our greatest obstacle may be ourselves. As surgeon and author of the book “Final Exam’’ Pauline Chen has noted, doctors simply are not taught how to counsel and treat the dying.
I know I wasn’t. In medical school I learned more about malaria and bubonic plague — two diseases I’ve yet to encounter in 20 years of practice in downtown Boston — than about advising patients as they approach death. Though some medical schools now do offer training in end-of-life care, and consultants specializing in palliative and hospice care have become more widely available, many physicians remain uncomfortable even discussing death with their patients.
I asked Dr. Vicki Jackson, director of the Palliative Care Service at Massachusetts General Hospital, why she thinks this is so. “We’re swimming in a culture of death denial,’’ Jackson told me. Expectations of medical science have become so inflated, she explained, that many patients and even doctors have trouble accepting the fact that people actually die.
A doctor is likely to see a patient’s death as a failure — a failure that he or she may not wish to contemplate. Yet a comfortable and dignified death can be, as Jackson puts it, “a beautiful thing,’’ and doctors should embrace more readily the part they might play in it.
I witnessed such a death not long ago. A patient of mine, a vibrant woman in her 70s, developed pancreatic cancer. She underwent exploratory surgery but the tumor proved too far advanced to be removed.
In the hospital, as she recuperated from her operation, the woman and her husband had several visitors. An oncologist helped them weigh the pros and cons of chemotherapy, which the patient, with her husband’s support, elected not to pursue. Palliative care consultants helped them understand their options regarding life support and made recommendations about pain control.
They also arranged for a psychologist to advise them about how best to share the news of her condition with their young grandchildren. A priest from the hospital’s chaplaincy prayed with them, and a case manager organized the woman’s transfer to a hospice in the town where the couple had once lived for several years and in which they still had many friends.
After my patient died, I asked her husband if all this activity was helpful, and he agreed readily that it had been. His wife’s illness, he told me, was “such a painful moment but also such an intense experience.’’ The palliative care team, the priest, and others, he felt, allowed them “the possibility of fully recognizing what was happening.’’
His statement was both moving and fascinating, and when I shared it with Dr. Jackson she knew exactly what the woman’s husband had meant. One of the most important things professionals who focus on end-of-life care offer, she said, is a “safe space’’ in which the many emotions patients and their families feel in the face of death — anger, sadness, confusion, regret, and yes, even joy — are validated.
But counseling patients for whom death is imminent may be easier for many clinicians than the no-less important task of reviewing end-of-life options for patients whose prognosis is more uncertain. Studies have shown that physicians are especially reluctant to initiate such discussions with patients they’ve known for a long time. We are particularly attached to these people and may find it hard to acknowledge that they will die, or we may fear that such discussions will signal to patients that we’re giving up on them.
Dr. Atul Gawande of the Harvard Medical School and Harvard School of Public Health, as well as a staff writer for The New Yorker, has recently received a grant to study how end-of-life counseling can become an automatic part of a patient’s care; part of a checklist, like screening colonoscopies and mammograms.
At the hospice, my patient with pancreatic cancer was surrounded by family and old friends and died peacefully. Afterward, her husband told me that he felt angry when he heard talk of “death panels.’’ Like many family members of patients who’ve received end-of-life care, he’d seen its benefits firsthand.
Perhaps he would agree that his wife had, in fact, had a “death panel,’’ of sorts — a team of nurses, doctors, clergy, neighbors, friends, and family who all supported her in the last days of her life. “I’m comforted,’’ he said, “happy, even, that she died the way she wanted to, that so many people were there for her. If there’s such a thing as a ‘good death,’ it was hers.’’
Three weeks after my patient’s death, the White House withdrew the proposal that advanced care planning be covered under Medicare.
Dr. Suzanne Koven is a primary care internist at Massachusetts General Hospital. She writes a monthly column about the uncertainties, dilemmas, and stories that patients and doctors share in practice. She can be reached at firstname.lastname@example.org.