01/25/2011 08:54 am ET | Updated Nov 17, 2011

'Death Panels' and Patients' Choice: How Should We Talk About Dying?

Death panels. Pro-lifers. Euthanasia. Rationed healthcare. Pharmaceutical greed. FDA bureaucracy. As costs and ethics battle it out in rhetoric, we still can't have a real debate about patient choice at the end of life.

A new Medicare provision quietly became effective January 1 and was repealed four days later. It was going to pay Medicare physicians to discuss end-of-life options with patients every year. Proponents said these annual conversations would help Medicare be more cost-effective and adaptive to patient's wishes. Opponents said it would coerce sick or older people to consent to die too soon. This isn't the first time the government tried to legislate a conversation between doctors and patients. New York's new Palliative Care Information Act simply requires doctors to ask very ill patients if they'd like information on hospice. It was strongly opposed by the state's medical association before it was passed last summer.

Should doctors be talking to their infirmed and elderly patients about end-of-life options? Why, the simple act of discussion confirms that options exist at all. At the heart of the matter is whether or not personal choice exists at the end of life and, if so, what is the best way for Americans to gain access to the information they need to make intelligent decisions about their final days. Sometimes patients want everything possible to prolong death. Sometimes patients want to go home to die in bed with palliative care only.

In our attempt to preserve our right to happiness, we've institutionalized the dying process to the point that we've relinquished control over the end of our lives. Death used to occur over much shorter periods of time, and it was part of the fabric of every family. Today, we give it visiting hours and turn death over to doctors, insurance companies and ethics committees who, supposedly, know something more than we do about this scary subject.

No wonder we're petrified that someday real death panels will exist to decide our fate. We have reason to be afraid. Recent published studies in The New England Journal of Medicine support the idea that patients have lost control of their care:

  • Only 16 percent of doctors said they'd discuss a terminal prognosis, even when the patient asks for the truth. Instead, they offer hope and additional treatment options.
  • Less than ½ of intensive care patients were asked about their preferences for life-sustaining treatment, even after 48 hours of receiving it.
  • Terminally ill lung cancer patients in hospice care lived three months longer, reported being happier and had less pain than those receiving aggressive care alone, yet most patients do not get hospice information until they have only a few weeks left to live.
  • Only 11 percent of nursing home residents say they want to receive intensive care treatments at the end of their lives, but aggressive care is still the standard.

It seems to me that, at best, the new Medicare provision was trying to solve a communications problem. But we all know that government can't regulate a conversation -- it can barely engage in one itself. It can't enforce honesty, and it can't help people prepare emotionally for their own lives. And it sure can't make us less afraid.

We need to separate the idea of advance care planning -- which is all about our own choice -- from the horned devil known as government-rationed care -- which is about someone else's choice for us. But so far, they remain lumped together under the term "death panels." That's just wrong.

The administration's recent actions are making things worse for people who want access to end-of-life choice. This is the second time the government has tried to enforce the discussion provision for Medicare doctors. It is the second time they've withdrawn it. Why do people think it's not in our best interest? Well, as far as I can tell, the administration kindled the conspiracy theories with its quiet appointment of Dr. Donald Berwick to the top spot in Medicare administration last year. It seems Berwick's been saying things that can lead us to think he's going to move the U.S. toward a rationed health care system with treatment for individuals based on formulas. The conspiracy fire was further fueled when Berwick announced the aforementioned conversation provision last Christmas Day. To the suspicious or frightened mind, these actions, taken when the country and journalists were looking the other way, can make the government's role in end-of-life issues seem closeted and nefarious.

I understand the argument that says it's a slippery slope from Medicare paying doctors to talk about advance care directives to government-mandated euthanasia. Sure, it could happen that way, the same way that food might eventually be synthesized into little pills or intelligent machines might one day rule the earth "Terminator"-style. But I don't buy it. I think there's another reason people don't want to discuss end-of-life choices: It isn't fun.

No law, incentive or technology will make it easier to talk about dying. That is up to us, and I'll talk about that in future posts. As a society, we've got to learn a better way to accept death as a normal and natural close to our productive lives.

Janice M. Van Dyck is author of "Finding Frances," a novel about end-of-life choices.