Sunday, December 19, 2010

We Need More

I've stayed away from writing about health care policy -- there are plenty of people out there far better as policy wonks than I could ever be -- but a recent editorial in the Journal of Palliative Medicine calls out for comment. The writer was Dr. Sean Morrison, a leader in the effort to bring hospice and palliative care into the mainstream of American medicine. Dr. Morrison notes that many American medical schools now teach palliative care principles. But the so-called hidden curriculum often works at cross-purposes and devalues the practice of palliative medicine.

You know what the hidden curriculum means. If you've ever heard something like, "Now that you've finished your training, we'll teach you what it's really like to do this job," well, that's the voice of the hidden curriculum. Physicians in training are highly influenced by the words and deeds of their senior instructors and mentors. If those doctors give no more than lip service to the core mission of palliative care -- relieving suffering, helping articulate goals, guiding patients and families through transitions -- then the younger generation will do the same. Monkey see, monkey do.

The palliative care workforce is still too small for the workload. Here are some remarkable numbers that Dr. Morrison cites:
  • There is one cardiologist for every 71 persons experiencing a heart attack
  • And there is one oncologist for every 141 patients diagnosed with cancer
  • But there is only one palliative medicine physician for every 31,000 persons living with a serious, life-threatening illness
Palliative care works. Whether delivered through hospice or not, palliative care programs "reduce symptoms, improve doctor-patient-family communication and satisfaction with care, [and] enhance the efficiency and effectiveness of hospital services," Dr. Morrison writes. To this hospice and palliative medicine specialist, that sounds like an important part of the effort to improve the American health care system's affordability, accessibility, and quality.

To counteract the hidden curriculum, we're going to need a lot more help.

Monday, December 13, 2010

"Does He Have a Cure?"

Dana was too young to be as sick as she was. Diagnosed in her early 40s with a rare form of uterine cancer, her tumor had filled her pelvis and literally was erupting through the skin below her belly button. When I first met her, she was weak, bleeding, and frightened. All of us involved with her care -- the oncologist, the ICU staff, and my palliative care team -- believed that she would only live a couple of weeks at most.

But we hadn't counted on Tom, Dana's hard-charging husband. Tom seemed to believe that he could bend the universe to his will if only he pushed hard enough. In family meetings he did the talking while Dana stayed quiet. Tom advocated continued aggressive care -- more chemo, transfusions to help with anemia and bleeding, radiation treatments -- when it seemed to us that Dana just wanted to stop. It was Tom who recited the list of milestones that Dana had achieved -- getting to attend her daughter's wedding, celebrating a birthday, moving into a new home. She had lived for several months longer than we'd believed possible. None of us were sure that Dana thought achieving the milestones had been worth it. But it was hard to find time to talk with her alone. Tom was a constant presence at the bedside.

Dana lived for much of her last six months in hospitals, spending three months in an inpatient bed at one point without a break. Many days were spent negotiating with Tom, who wanted to blame Dana's weakness on anything -- the drugs, inadequate nursing, the food -- anything but the terrible cancer that was taking his wife's life.

"Am I dying?" is a question a hospice doctor hears a lot. There's no border crossing, no checkpoint, no security screening that demarcates the beginning of the Land of the Dying. One often can only know the answer to the question in retrospect. Certainly from Tom's perspective, his wife was not dying until the very end.

But the end came eventually when Dana was admitted to our palliative care floor for the last time. Tom was still talking about radiation and more chemo, but this time Dana stopped him. She'd had enough, she said, and there would be no more. We focused on comfort -- although Tom still requested, and got, more lab tests and a transfusion just a day before Dana died. And we had endless discussions with Tom about exactly how much pain medicine we could give, because he believed the drugs, and not the cancer, bore responsibility for his wife's decline.

Late one Friday afternoon, I quietly entered Dana's room. She was unresponsive and ashen. I knew from her breathing that her life expectancy could be measured in minutes. Tom was sitting by the bed, stroking Dana's face and holding her hand, his back toward me. Another family member acknowledged my presence with a nod. The atmosphere was so charged, the room so still, that I was afraid to breathe loudly, let alone speak. After perhaps five or ten minutes, the family member said, "The doctor's here, Tom. Do you want to ask him anything?"

A long minute passed, and Tom asked, "Does he have a cure?"

My heart burst open. I had to work to prevent my knees from buckling. And then I looked at Dana. She was gone. I put my stethoscope on her lifeless chest, and Tom -- the man who'd shown no pain, who'd demonstrated nothing but a fierce determination to surmount his wife's cancer -- Tom began to weep.

And I found my inner self rejoicing just a little bit. Not over the death of a brave woman, and not over a husband's pain. But the fact that pain could be expressed, that anguish could be seen -- that seemed cause for quiet celebration. Tom was unlikely to ever be able to heal without taking the first, tentative step of acknowledging his loss and his suffering. I hope he can remain open to the feelings he finally let us see.

And as for me, I know I have to let my heart break over and over again, as I encounter the Toms and the Danas of this world and try to guide them through the Land of the Dying.

Saturday, December 4, 2010

Facing Death

If you haven't seen it, you owe it to yourself to watch "Facing Death," a documentary recently shown by the Public Broadcasting Service. Here's the link:

This documentary highlights some of the trade-offs inherent in high-tech, modern medicine. I thought it was extraordinary that several patients and their families permitted such a personal look at their journeys through serious illness.

As a hospice and palliative medicine physician, I was surprised that symptom relief, comfort care, and hospice weren't dealt with at all. Hospice was mentioned once -- unskillfully, I thought -- by one doctor talking with one family. And I cringed when she said that "doing nothing" was an option. For the record, hospice care isn't doing nothing. It's substituting one goal of care for another. I frequently have hospice patients receiving multiple medications to relieve their pain and other symptoms while our entire team works to assure emotional and spiritual needs are attended to. That's not nothing. That's a whole lot of something -- something that all of us need when we are facing death.