Death panels and the ethics of health care proxies

I participated in death panels. Many times. They weren’t panels exactly. But I was doing what the sort of thing that Sen. Grassley said was going to determine whether “you’re going to pull of the plug on Grandma.” The only difference between me and the death panels (which never did make it into the final health care bill) was that under the proposed legislation physicians on such panels would receive Medicare payments. I didn’t receive payment for my services. Also, I am not a physician.

The so-called death panels would have provided voluntary counseling for Medicare patients around what kind of care they wanted at the end of life. This is exactly the kind of conversations I had with members of the Ethical Humanist Society of Long Island in my role as the spiritual leader.

Actually, the first time I engaged in such discussions was when my elderly parents presented me with their living will. They wanted to make sure that, as they said, they didn’t want to become “vegetables.” Living in southern Florida, they knew first hand what happens to many as they near the ends of their lives. My parents didn’t want extraordinary measures taken to keep them alive, as they had seen others endure.

The language in my parents’ living wills was broad, but after my conversations with them I had a good sense of what they really meant. Not many people, though, have such conversations with their families—or with their physicians or with anyone else.

It isn’t easy to talk about death and dying. Few want to contemplate their own deaths or that of a loved one. Even fewer want to imagine their final days being hooked up to a machine, pricked with countless needles and a tube stuck down their throat. But this is a reality that many will face and it is better to have your say now about what you want done to you when you can no longer speak for yourself.

As a member of a hospital ethics committee, I have seen what happens when advanced directives are absent. There are disagreements between families and physicians or between various family members. This situation, not at all uncommon, adds to the anguish that a family already is experiencing.

Sadly, only 10% of the population has documented their wishes for end-of-life care. Forty per cent haven’t even thought about how they want to be treated when the end of life is near.

As for the “death panel” provision that didn’t make it into the health care bill: I don’t know that physicians are the right people to help people with such planning. My own experience is that many medical doctors are just as uncomfortable discussing death as are patients. Better placed than physicians to have the conversation, in my view, are clergy—priests, ministers, pastors, rabbis, and others who care for the spiritual lives of their congregants, those who are with those during life, know the family, and are with them they are dying.

For several years in my role as the Leader of the Ethical Humanist Society I sat with members and helped them fill out a form that listed where they kept valuable papers, who they wanted contacted in case of an emergency, what wishes they may have for their funeral or memorial service and where they kept their up-dated will.

The most important part of the conversation was encouraging the person to designate a healthcare proxy. This is the person who will speak for them if they are unable to speak for themselves. In New York, at least, the healthcare proxy form can be downloaded from the Internet. It requires two witnesses; a lawyer isn’t necessary nor is a notary public. It is legally binding and it gives the proxy the same power as the patient would have if the person could speak for herself.

Not knowing what a person’s wishes are about their own end-of-life care places an enormous emotional burden on those that love them. I think there is an ethical obligation to talk about these matters now and to have a health care proxy. It isn’t easy to think about this and even more difficult to take the step and actually fill out a health care proxy. But doing so may be one of the greatest gifts a person can give to those who live on after them.


3 thoughts on “Death panels and the ethics of health care proxies

  1. As you said, doctors aren’t in the business of dying, but in the business of healing. Discussing death runs counter to what they do. Worse, hospitals have records on their doctors and death is seen as a failure for both the doctor and the hospital. My husband (a nurse) has heard many doctors say “not on my watch”– doing painful and invasive procedures, with the goal of getting the patient out of the unit. Even WITH the advance directives, doctors ignore them for fear of lawsuits and a black mark on their name. The solution (I think) is to have hospice services in each hospital, so that a transfer is not a statistical “failure” but a natural outcome, with dignity and comfort to the patient and family. And of course, counseling to discuss treatment options so that the patient can make the best informed decision given his/her illness, prognosis, and what each treatment option is expected to feel like and accomplish. Would I want to live on a ventilator and a feeding tube? No, thank you.

  2. It’s such an interesting post.

    The raise of the insurance companies determine the scale of “fear from lawsuits” and of course, bad reputation.

    This issue cause a significant change within the attitude of every Doctor, inside and outside – of the US.
    Also, this cause a new demand for insurance that each doctor cannot live without it. But the bad reputation will stay, even if you get covered by your insurance company.

  3. My husband and I were among those who sat with you and did our “living will.” It really was not hard to do; the harder part is imagining living for a long time with artificial means to keep us alive. Chris and I thank you for helping us do this and for making the experience important and comfortable.

    Ironically, when I was giving birth to my son, Long Island Jewish Hospital also made us fill out paperwork about this before I gave birth. The other irony, is that Sloan Kettering did not ask me for such paper work and that was a much more involved surgery.

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