Discussing End Of Life Care, Rationally
August 15th, 2009
The health care reform debate seems to have been hijacked in recent days by misinformed people claiming that President Obama and Democratic congressmen want to establish death panels that will kill granny. This is completely false (the New York Times today has an article investigating the genesis of this lie). The anti-reformists base their charges on section 1233 of the House reform bill, which in turn is based on language first proposed by a Republican, Sen. Johnny Isakson (R-GA) (although Isakson, who voted against the Senate health reform bill, has since tried to distance himself from said language).
At any rate, what the bill actually proposes is that doctors be reimbursed for counseling dying patients and their families on their different end-of-life options. Medicare doesn’t compensate for such counseling now; as a result, far too many patients are subjected to intrusive, painful and fruitless treatments that may or may not prolong life a few weeks or even days, at considerable physical, emotional and financial cost. The bill also calls on doctors to advise patients on how, if they so choose, to prepare advance directives, often called living wills, that would inform doctors and relatives on how they would like to die.
It would be a good thing if all this ranting about death panels led to more thoughtful family discussions about living wills and the end of life. Most of us likely have stories about needless interventions taken as a loved one lay dying (my stories can be found in a recent Working Parents post, How Would You Ration Health Care?). Doctors are often opposed to such unnecessary treatment–which is why the American Medical Association supports the House provision, as does the AARP. However, physicians often feel forced to do everything possible, whether medically recommended or not, by family members who want to go the extra mile out of guilt or an inability to let go. Some of that guilt might be alleviated if we all had living wills.
One way to start the discussion is to visit Engage with Grace, a web site started by a woman whose sister-in-law suffered an extremely painful death from breast cancer. The site has a one-panel slide you can download that contains questions every family should discuss about how they would like to be treated in the event of a calamitous illness.
There are certainly many people who would want every extraordinary measure possible taken at the end of life. There are others who want to end it all quickly once they learn they have a fatal disease. For example, I read recently that Melvin Purvis, the FBI agent who killed John Dillinger and Pretty Boy Floyd, shot himself at age 57 shortly after learning he had brain cancer. Most of us, though, lie somewhere in between these two extremes, but does anyone in our family know it?
End of life is a huge issue, both for each individual and family, and for the nation as a whole, which spends enormous amounts on the dying, far more than on wellness or prenatal care. As a Wall St Journal article recently pointed out:
About 5% of Medicare beneficiaries die each year, according to a 2001 study published in Health Affairs. But spending during the last year of life accounted for 27.4% of total Medicare spending, the report found…The Urban Institute, a nonpartisan research center, found that the government could save $90.8 billion over 10 years by better managing end-of-life care. The savings would result from training aimed at discouraging doctors from providing care simply because they would get paid for it, and from having teams at hospitals help terminally ill patients manage their pain once they chose to stop treatment, among other things. The institute’s report, issued last month, concluded that much end-of-life spending isn’t sought by patients and goes against their families’ expressed preferences.
What do you think? Have you discussed your end of life wishes with your family? Do you have a living will? And would you appreciate counseling from a physician on these issues?
If you’d like to prepare an advance directive, this site provides state-specific downloadable forms, and the AMA web site contains more information on directives.
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