Friday, January 28, 2011

THE END-OF-LIFE CONVERSATION


An article in this week's Journal of Clinical Oncology (http://jco.ascopubs.org/content/early/2011/01/24/JCO.2010.33.1744.abstract?sid=8027a539-e187-47f9-a22c-c44361ac2edf) recommends that people with advanced cancer should be told what end-of-life care choices are available earlier in the course of their disease. Unfortunately, these options are often presented only days before death. Hospices nationwide complain that patients are regularly referred to them too late for much benefit.

This delay is no favor to patients or their families, as it sustains suffering rather than authentic life. In addition, it generates huge and unnecessary costs. It's estimated that between one-third and one-half of a person's lifetime healthcare costs occur in one's final two weeks.

What's our problem, anyway? Why do we find it so difficult to talk about death? 

Well, it's scary, isn't it? One Halloween evening when my kids were little, I took them trick-or-treating. I thought it'd be a kick to walk through a cemetery that connects two neighborhoods. They threw a fit. Wouldn't do it, no way. At their young ages, they'd already been indoctrinated into the notion that death equals abject fear. 

That notion seems to be one of our national pastimes: when last year's healthcare reform bill contained a passage offering physicians remuneration for end-of-life conversations with patients, fear addicts all over the country interpreted it as "death panels," pulling the plug on grandma.

We aren't bound to think that way. In fact, our culture's atypical in its deep fear of death. I was in Mexico for the Day of the Dead last year. Their version of Halloween contrasts with ours. The day before, families visit the graves of their relatives and scrub the stones clean. On the day, a mass is held in the cemetery and then everyone parties. They picnic on the graves, sharing food and tequila with the deceased. Mexican cemeteries are places of loving remembrance, not fear.

All fear is based in unknowns, of which the most fundamental is death. But that doesn't have to be. The unknown can generate curiosity as easily as it does fear. How much do we abbreviate our lives in order to "play it safe?" In her classic On Death And Dying, Dr. Elisabeth Kubler-Ross concluded that once we lose our fear of death, we begin to live fully.

It's not so hard to achieve that recognition, really, especially since it's a given, a sure thing. We will die, period. That's not morbid, only a simple certainty. Further, everyone else will die, too. The realization that we will lose everyone we love ought to help reframe how we'll interact with them in this moment. Now and then I toy with the idea of strolling down our little town's main street dispensing Certificates of Mortality to the tourists.

This reluctance to face our impermanence is part of why we don't have end-of-life discussions with our doctors. Another part is what's in doctors' minds. They can harbor the feeling that their patient's death signifies medical failure. Considering how central the issue is in medical practice, I'm surprised how seldom it appears in training. It occupied zero space in my medical school, and in the hundreds of continuing medical education sessions I've attended since, I can't remember more than three or four that even touched on it.

Those of us, whether patients or healthcare practitioners, who find this subject important will find a way to bring it up within the intimacy of the examining room. If we don't, no one else will.

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