It shows the level of suspicion people have for government and the health care system that many of us distrust paying doctors to engage in end-of-life discussions. Indeed, during the run-up to the passage of Obamacare, Sarah Palin labeled a never-passed provision to pay doctors for such conversations, “death panels.” That political sound bite struck such a powerful chord that it quickly entered the lexicon.
I disagree strongly with Palin. Conversations between doctors and patients about end-of-life treatment options are not death panels. (In fairness, Palin has since backed off that claim.) Indeed, such conversations should be a standard part of a doctor’s professional engagement with patients—regardless of pay. Moreover, patients should insist on discussing these matters—not just with doctors, but also with family and friends—before times of need.
So, why is it controversial to pay doctors for these conversations? Blame a toxic soup of money combined with advocacy in bioethics, among assisted-suicide proponents, and in a media in favor of a “quality of life” ethic. In this oft-pitched meme, refusing care when one is very ill or disabled is “death with dignity,” while seeking to “fight, fight against the dying of the light” (to quote Dylan Thomas’s evocative poem) is somehow cowardly, selfish, or undignified.
At the same time, the concerted political drive to cut costs in health care—even as covered procedures are expanding—has many worried that patients with expensive conditions or a perceived low quality of life will be pressured to refuse treatment. That isn’t paranoia. I often hear terrible stories of seriously ill loved ones treated by medical personnel as so much unwanted ballast.
The passage of Obamacare has added to the worry that true death panels—health care rationing boards—will soon be established. Indeed, President Obama told a questioner during a 2009 townhall meeting on health care held at the White House that it might have been better for her one-hundred-year-old mother to receive pain pills than a pacemaker. Meanwhile, opinion leaders such as the New England Journal of Medicine and high-profile columns in the New York Times argue explicitly for health care rationing, based on subjective quality-of-life criteria.
Then, there is the ad hoc health care rationing that is already occurring at bedsides—known as medical futility—by which doctors or hospital bioethics committees refuse wanted life-sustaining treatment based (again) on the perceived quality of a patient’s life—and the rarely stated but also real factor, the potential costs of care. Indeed, Texas, among other states, legally permits hospital bioethics committees to unilaterally refuse wanted care.
What to do? The best defense against having your life’s worth judged by a death panel isn’t hiding in a hole of denial but having “the conversation”—or better stated, conversations—about what you would and would not want at the end of your life, should you become incapable of making your own medical choices.
These are not simple discussions. There is a lot to consider and a lot at stake. Do you want CPR if you have a cardiac arrest? What about antibiotics if, say, you catch pneumonia? Then there are potential questions of feeding tubes or kidney dialysis.
But you say: How do I know whether I would want or refuse these things until I know what my overall condition will be when these issues arise? That is why a one-off “conversation” isn’t enough. Rather, you and your doctor, family, and trusted friends should engage in a continuing dialogue.
Not only that—talk alone isn’t enough. Your best chance of avoiding sentencing by death panel is to put your medical preferences in writing in an advance directive, most particularly one that names a trusted loved one or friend to be your legally appointed surrogate to make these choices if you become incompetent. (These are often called “Durable Powers of Attorney for Healthcare,” although the name may vary. The Patients Rights Council, for which I am a paid consultant, offers such a state-specific Protective Medical Decisions Document. The American Medical Association, the National Right to Life Committee, and other groups also offer model documents. Your lawyer can also prepare one according to your directions.)
My uncle died of Alzheimer’s disease. Before becoming incapacitated, he named me as his surrogate in a durable power of attorney and made it very clear to his doctors and me what he would and would not want. When he eventually entered a catastrophic state of decline, I received a call from his doctor informing me that my uncle had a serious infection and asking whether he should be administered antibiotics.
Sometimes the right decisions are the most painful. Because of our conversations and the contents of my uncle’s advance directive, I knew he would refuse antibiotics. I did that in his stead, and he died peacefully the next day. Had my uncle wanted such care under those circumstances, I would have said yes to the request, and it is doubtful that a “death panel” could have prevented him from receiving the care.
As a lawyer, I once represented the wife of an Alzheimer’s patient before an HMO ethics committee. The doctor in charge of the case—who had never met the husband while he was competent—wanted to pull his feeding tube. But because my client had her husband’s health care power of attorney, knew his preferences, and was able to describe his mindset based on their conversations, the committee decided to change doctors in the case instead of trying to impose death.
When the man died three years later, I received a grateful call from my client thanking me for helping ensure he died in his own time. But I hadn’t done anything.The patient had protected himself from what could have been a well-meaning death panel by having conversations and ensuring that his wife had the power to decide when he became incapable.
So, don’t be afraid of end-of-life conversations with doctors, family, and friends. They are powerful protectors that may help ensure that you receive the level of care you want tomorrow.