Section 1233 of the House-drafted legislation encourages health care providers to provide their Medicare patients with counseling on . . . end of life treatments, and may place seniors in situations where they feel pressured to sign end of life directives they would not otherwise sign . . . .
[T]his provision could create a slippery slope for a more permissive environment for euthanasia, mercy-killing and physician-assisted suicide because it does not clearly exclude counseling about the supposed benefits of killing oneself.
— House Republican Leader John Boehner (R-OH) and Republican Policy Committee Chairman Thaddeus McCotter (R-MI), July 23, 2009
The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care.
— Sarah Palin, August 7, 2009
America has been in desperate need of a serious health care debate for years. Which is why it is so disappointing to see an honest and productive public debate polluted by blatant lies, as told to us by politicians who are supposed to be informed.
As many have observed elsewhere, the myth of euthanasia and death squads stems from a single provision attached to one of the reform bills allowing doctors to bill for the time they spend counseling patients about end-of-life care. There are no provisions for death squads. In fact, as a doctor who has discussed end-of-life issues with his patients many times, I resent the implication that by talking with patients about death I am taking my place next to Dr. Kevorkian.
We cannot enact health care reform without dealing with end-of-life issues. Death is the inevitable outcome of a lifetime of medical care, an outcome that will occur no matter how good the doctors and nurses are. The best doctors eventually lose 100% of their patients, just as the worst ones do. The difference is how the end comes about.
Counseling is the cornerstone of end-of-life care. Since death is inevitable, at some point most patients and their families will have to address matters such as life support, ventilator care, and extraordinary medical treatments. The proposed provision would allow doctors to allocate time apart from a regular visit to sit and talk about fears patients and families have about the dying process, rather than having to cram the discussion in between medical complaints at an annual office visit, or worse, having to bring it up at for the first time at the bedside of a dying patient. I can hardly think of a more humane and important use of a doctor’s time.
In my work, I welcome the opportunity to give advice. Unfortunately, many patients don’t want advice — they want drugs, diagnostic tests, or a referral. They want something from me, something that often only requires my signature. And either they don’t care what I think, or they have so many concerns that I end up as an expedient ordering a drug or a test for each symptom and sending them on their way.
This is not what I spent 8 years of medical training for. All that knowledge is there to be shared, and I should be paid to share it. But I am not paid to share information; I am paid to sign things. This is the end-result of a system that rewards providers for seeing patients in large volumes and devalues old fashioned talking and listening.
What’s wrong with a Medicare provision that lets me sit down with a patient for half an hour and explain to her what CPR is, and when it is beneficial; what a ventilator is and why she might want to be on one or not; what is meant by “life support” and when life support makes sense and when it doesn't?
The most important decision a doctor makes is when to treat and when not to treat. There are times when doing something is much worse than doing nothing at all. Patients need to understand that sometimes doing nothing is the best treatment. That is what end-of-life counseling is all about.
Such explanations take time, and a great deal of experience and skill. It is one of the most challenging tasks in my work, and one every doctor ought to be paid for. When a patient knows his insurance will cover end-of-life counseling, he is more likely to feel comfortable asking his doctor to explain the dying process. Patients deserve that service, and it should be a standard part of every health plan.
Some time ago, I treated a middle aged man I’ll call George who destroyed his liver with chronic drinking. He had bleeding ulcers and esophageal varices, a condition in which a diseased liver produces massive bulging veins in the lower esophagus that are prone to catastrophic bleeding. George bled so rapidly that it took more than two dozen units of blood over the course of a week just to keep him semi-conscious. When he was awake, which wasn’t often, he asked nurses and doctors to please take all the tubes out. I wanted to, but he was too confused for me to trust his mental state.
His out-of-town family said travel was “too expensive” for them to come visit him in the hospital. After he spent a couple of weeks in intensive care on just about every medication we could pour into him, his relatives finally showed up. We carefully discussed withdrawing care. Nothing we were doing was going to save him, I observed, and we seemed to be merely prolonging his suffering. I pointed out that he expressed the desire to be taken off the ventilator, that his condition was hopeless and his liver was completely shot, and that he was not a candidate for the only procedure that had any chance of helping him — a liver transplant. I told them he might be more comfortable and die more peacefully at home, surrounded by loved ones.
After listening to my explanation, his sister said to me, “I’ll have to talk it over with my family.” Which she did, I guess. The next day she sent word that the answer was no. They wanted everything done.
Eventually we got him off the vent and moved him to a regular room. He lay there in a state of delirium for a few days, all alone, and died. I felt horribly sad for this man, and harbored mixed feelings of frustration with and pity for his relatives, who were so overwhelmed by the urgency of the situation that they were afraid to make the decision to let him die peacefully at home. Instead, they left him to die a lonely, antiseptic end.
We have to do better than this. If George had left a living will or consulted with a doctor prior to his fatal event, all this misery might have been avoided. Such conversations are not about euthanasia. They are about preparing for the inevitable. Talking to patients about end-of-life issues will no more lead to euthanasia than planning fire drills will lead to arson.
This kind of counseling is necessary. Not only should it be encouraged, it should be considered a normal a part of medical care, like mammograms and serum cholesterol checks. The people who argue otherwise don’t care about alleviating human suffering. They want to scare people into turning against health care reform.
People like Boehner, McCotter, and Palin are responsible for the fear that leads to deaths like George’s. They too will die one day, and if they succeed in their aims, their reward will be the horrors of the health care system they wrought.
I wish I could call it justice, but I can’t bring myself to wish that kind of suffering on anyone.