Beyond “Death Panels”: The Right Way To Die

Ninety percent of Americans say they would prefer to die at home, yet more than half of us die in hospitals. The "death panel" rumors of the last few weeks have obscured some uncomfortable but important facts: everyone dies, and end-of-life care will always be a part of medicine, whether we like it or not.

According to Dr. Diane Meier, a palliative-medicine specialist at Mount Sinai Medical Center in New York and director of the Center to Advance Palliative Care, what this country needs is more end-of-life counseling (what critics refer to as "death panels"), not less—and not as a cost-cutting measure but as a way to provide people with the guidance and care they need while being treated for a serious disease at the end of life. Palliative care is an emerging medical specialty dedicated to helping patients and their families navigate a serious or terminal illness. These physicians coordinate communication between the patient, their family, and the other medical specialists involved in the patient's treatment. They spend as much time as necessary to ensure that patients and their families understand the state of the disease so that they can choose the treatment options that are best for them.

NEWSWEEK's Ian Yarett spoke with Meier about the "death panel" controversy, palliative care, and health-care reform. Excerpts:

As a leader in the field of palliative medicine, how'd you feel to hear end-of-life counseling sessions described as "death panels"?
Those are pure lies. They were deployed by people who are clearly looking to frighten the American people and particularly Medicare beneficiaries—my patients—by saying things that weren't true. The No. 1 concern of patients and families is not enough time with their doctor. Doctors do not get paid for spending time with patients and families. They get paid for doing things to them. It is much faster and cheaper for a doctor to order another PET scan than to sit down and have a 90-minute conversation with that patient and family about what the options are. [The provision for end-of-life counseling in Obama's health-care bill] was a very small step toward saying: we think it's important for patients to be able to get their questions answered and for doctors to be able to understand who their patients are. My guess is that if this provision had stayed within the bill, it probably would not have had a huge impact because the reimbursement still would have been inadequate to really drive a change in physician behavior. But at least it would have been a step in the right direction.

Associating cost savings and end-of-life care is clearly a sensitive subject, but couldn't palliative care have economic benefits, say helping to avoid unnecessary or unwanted treatments?
There's quite a bit of literature showing that palliative care and hospice care indeed does save money, precisely because when patients have a full deck of cards and really understand what their choices are and what the likely future course is, they very often make more conservative choices. When patients are not fully informed about the reality of their illness and the consequences of it, how can they make rational choices? If they knew what the stage of their illness was and what their options were, many people would say, you know, I'd rather spend my last six weeks at home, where I'm in control.

It seems like these kinds of considerations could really change the nature of the rationing debate …
It really isn't about rationing—that is another false accusation. It is about giving the information and the power and the control back to the person who this is supposed to be about: the patient. Right now, the medical marketplace is driving decision making—how health care is paid for is driving decisions—and what gets paid for gets done, and what doesn't get paid for doesn't get done. If you want to talk about the real death panels—the real death panels are the people who cant get coverage for preexisting conditions or who can't afford their medicines because they're too expensive, or who find themselves bankrupting their families to pay for something of very marginal benefit—those are the death panels.

In an ideal world, how would you like to see palliative care reflected in health-care legislation?
There's approximately one oncologist for every 70-100 patients with a new diagnosis of cancer; there's one palliative-medicine physician for every 130,000 people with a serious illness. So it's a huge problem of inadequate numbers in the training pipeline, and public policy could be enormously powerful in changing that. For example, you could do loan-forgiveness programs for doctors and nurses who specialize in palliative care.

Where do you stand on doctor-assisted suicide?
The [Kevorkian] movement showed us how scared people are of what might happen to them and how little faith they have in the medical profession to protect them from the ravages of a serious illness. Public-opinion polls that were done over the years had consistently showed a significant majority in favor of legalization of assisted suicide.

My view is that these people who are polled are the "worried well," for the most part, who are so terrified of the loss of control and the fear of uncontrolled pain and lack of control that is associated with a serious illness, that they want the option to get out if they need to. But if you polled people who are living with serious illness, many, many fewer would say they want that option. If you look at the data from Oregon, which is where assisted suicide has been legal for about 10 years, a very tiny fraction of the citizens of Oregon make use of this bill. What was really needed, but people didn't know what the name was, was palliative care. People needed to know that when they were facing something they couldn't control that was very frightening, that they could reliably turn to someone in the medical profession who would listen to them, hear what their concerns were, and respond.

Is there something inherently flawed in the way that Americans think about and deal with end-of-life issues?
I think it is a universal truth that people are terrified of dying, and I think that's built into our biology. We're a can-do nation—there is no problem we can't fix, there is nothing that enough research and enough investigation and enough creativity and enough free-market capitalism can't resolve. Some of that "treatment imperative" extends to a kind of unconscious belief that with enough research, even death itself can be defeated. Which of course is not true, nor is it desirable. But that's the unconscious impulse—if we just funded the NIH more, cancer would be cured, heart disease would be cured, and I have to say to people, you know, it's pick your poison. So you don't die of cancer, you don't die of heart disease, you die of a progressive dementia instead. It's gonna be something. So there is that kind of unexamined, almost childlike belief that all problems can be fixed with enough investigation and investment of dollars and technology. I think doctors and patients and families have been a kind of folie à trois—everyone participating in this inappropriate optimism and denial of reality.

How common is palliative care in other counties?
It's highly variable. In the British Commonwealth countries, Britain, Scotland, Wales, Australia, New Zealand, and Canada, palliative care is pretty broadly available. There is [also] a strong educational infrastructure and strong commitment to research in palliative medicine, which has really helped improve the evidence base. No other country in the world has hospice, though. Only the United States has a federal benefit that pays for intensive, sophisticated palliative care at home for people who are in the last months of their life.

What does the death-panel debate say about our approach to death and end-of-life issues? What is it about our approach that has allowed the death-panel rumor to become so viral?
It has been a deliberate effort on the part of opposition to health-care reform to terrify the American public. It was a version of Swift-Boating. If you're willing to say anything not based on the truth, and your colleagues are willing to repeat it in the press and on the Internet, it acquires its own reality. I think patients and families really get it, because they are living through it, and all they really need is someone who can sit down, turn off their beeper, and not look at their watch every 30 seconds, to listen and provide information.