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Debating the Ethics of Rationing End-of-Life Care

April 26, 2010 at 12:00 AM EST
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NewsHour analyst Susan Dentzer, editor-in-chief of Health Affairs, moderated a Miller Center of Public Affairs debate on the ethics of rationing end-of-life health care after the issue gained prominence in the health care reform discussions. Here's an excerpt:
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GWEN IFILL: Finally tonight: a debate over end-of-life decisions. Should society engage in rationing costly health care when recovery is no longer an option?

That was the debate held at the University of Virginia’s Miller Center of Public Affairs recently.

Arguing for rationing: Ira Byock, a doctor and director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, and Arthur Caplan, director of the Center for Bioethics and a professor at the University of Pennsylvania. Arguing against rationing: Ken Connor, chair of the Center for a Just Society and a lawyer in private practice. He represented former Governor Jeb Bush’s defense of Terri’s law, the legislation named for Terri Schiavo. And Marie Hilliard, director of bioethics and public policy at the National Catholic Bioethics Center, she is also a registered nurse.

The moderator was Susan Dentzer, editor in chief of health affairs and an analyst for the NewsHour.

SUSAN DENTZER: Some people have said we should dispense with the word rationing and just start to talk about rational care. Do you think we could ever agree, as a society, on what rational care is?

Art?

DR. ARTHUR CAPLAN, director, University Of Pennsylvania Center For Bioethics: Well, I would hope so. Let’s take a look at what works. Let’s understand rationally how to handle decision-making authority if you’re not competent.

Can we set up an understanding that we don’t want meddling in direct bedside care, that the beneficence of the doctor should be the ethic that we want to see? But we don’t have much evidence right now about what works and what goes on in health care.

I would venture to say we don’t even know what prices are. We don’t know what we’re paying for most of the time. Anybody who has looked at a hospital bill has been through an experiment in some kind of astrology.

DR. ARTHUR CAPLAN: There’s no decoding it. No one knows what is going on.

So, could we get more rational than we are now? That would be very easy to achieve. Would that spare us rationing? I don’t know. I don’t think so, but I think it would help guide, again, the decisions that we’re going to have — the tougher decisions that are looming out there.

SUSAN DENTZER: Ira, you were perking up there.

DR. IRA BYOCK, Dartmouth-Hitchcock Medical Center: Well, we’re not just rational at all as a society, as a culture. Avoidance of death is pervasive in our society. “I don’t want to think about it” really captures the American approach to dying.

And denial of death doesn’t get easier as people get sicker. Sometimes, it gets more entrenched. You know, superstition is alive and well in America today. We don’t even want to talk about it, as if, oh, don’t talk about that, dad, as if talking about it will make it happen.

So, we have to get over it. We’re mortal. We’re going to die. Let’s get over it and start talking about how we can make the best use of the resources that we have available to them — to us — including the best medical care possible.

But we ought to do that as a moral society, with the stakeholders, the governmental stakeholders, the ethicists, the marketplace, the pharmaceutical companies. There’s a moral, ethical bottom line that they have to us in, as a society, in deciding what makes sense.

But we need to do that with the full acknowledgment that we’re mortal, and we need to make the best use of our resources for the time that we are given this gift of life.

MARIE HILLIARD, National Catholic Bioethics Center: We cannot do it all, but we have to make sure good education is done and decisions are made autonomously, with families, with physicians who are not made to feel uncomfortable in telling people that this is not going to be in their best interest. We think this treatment, this procedure really is not only not in your best interest, but might even be harmful.

It’s hard for physicians to do that and health care providers to do that. But we have good programs that help physicians to learn those skills, to work with families.

KENNETH CONNOR, Center for a Just Society: You asked the question about rational care. I think that makes a lot of care.

The kinds of questions we ought to be asking, I think, is, is the procedure within the generally accepted standard of care? Is it — is it necessary for the patient? Is it clinically appropriate? Is the cost reasonable compared to similar services?

These are the kinds of questions I think we ought to be asking. But we shouldn’t relegate to the faceless bureaucrats the discretion to decide who lives and who dies, who gets treatment, who — and who doesn’t based on things like quality-adjusted life years or quality of life calculus, or functional capacity studies.

Old folks with dementia don’t score well using quality of life calculus. People who are disabled don’t — don’t score well using functional capacity studies. But their dignity is not diminished and their life is not worth any less than any other person. And we shouldn’t have some bureaucrat in Washington deciding they don’t have a life worth living, end of story, no more care.

GWEN IFILL: If you want to watch the entire debate, please check your local public television station listings.

JUDY WOODRUFF: Again, the major developments of the day.

A deepwater oil spill in the Gulf of Mexico spread toward four U.S. states. Cleanup efforts were under way across the South, after tornadoes killed a dozen people over the weekend. And Senate Republicans blocked a Democratic effort to start debate on the financial reform bill.