This week the Obama administration pulled back on a Medicare provision that would have compensated providers for discussing end-of-life care. This is an unfortunate reversal.
The problem is that many people don't get the kind of care that they would choose for the end of life. This happens because most doctors fail to raise the subject until patients are gravely ill. There are many reasons for this, including some physicians' -- even oncologists' -- discomfort with the topic of death and dying. Some fear diminishing their patients' confidence in their healing powers. Some cave, consciously or otherwise, to a conflict of interest: infusing chemotherapy is profitable; prescribing palliative home care is barely so, if at all.
Good doctors may take genuine pride in solving medical problems their colleagues can't: if you can figure out what drug to give a patient and make them well, that's gratifying. Competition factors in, too; the work can border on gamesmanship, when one oncologist wants to shrink a tumor another couldn't control. And hope: it's not just that patients and families don't want to give up; fine physicians can become so invested in their patients' cases that they, themselves, lose perspective and objectivity regarding the odds for recovery.
Many doctors are simply too busy to broach the subject before a patient becomes critically ill. If you have a waiting room full of people waiting to see you, it's hard to bring up a "what if" scenario and discuss a patient's wishes for the end-of-life in a thoughtful, not rushed way. The Medicare provision might have helped some people get the kind of end-of-life care they'd choose, instead of what's given automatically.
The issue is not about death panels or rationing of care. It's about respecting patients' wishes.
For example, an oncologist might ask a patient with lung cancer whether they'd want to be kept alive if their disease progressed to the point that they'd need mechanical support on a ventilator. A primary care physician might ask a well, 65-year-old woman if she'd want to be sustained in a comatose state with a feeding tube and other devices for weeks or months or even years after suffering brain damage from low oxygen after a heart attack or some other untoward, unexpected life-threatening episode. In each of these circumstances, if a doctor has discussed the subject with the patient in advance, it's more likely the patient will get the kind of care he or she wants at the end of life.
Meanwhile, and always, I recommend that patients be proactive about their preferences. If your doctor doesn't mention the subject of advanced directives, tell her what you want and put it in writing. Here's a partial list of sites that provide related information on this subject:
MedlinePlus on Advanced Directives;
New York State: information on Health Care Proxy forms and DNR orders;
Medicare on Preparing for Your Future Health Care Needs;
Caring Connections on Advanced Directives;
Family Caregiver Alliance on End-of-Life Choices.