Physician and Policy-Maker : Hospice Doctor Torn by Dilemma

The doctor was talking about a case much on her mind.

A 60-year-old man was dying of tongue cancer. His jaws were locked, so he could not eat, and he needed to take food through a tube in his nose.

“The nutrition through the tube got him in good shape physically--which made him exquisitely aware of his pain and horrible condition,” the doctor recalled.

“He pulled out the tube while under my care. We replaced it. He pulled it out again. He said he’d just like to try it without the tube. We did that, and he got whiffy enough mentally that he didn’t care as much about the pain and his condition. We could have put a tube in his stomach, and the lab data would have said he was healthier. But he was more comfortable the other way. Which is right?”

There are few physicians who wrestle with such complex dilemmas more frequently than Dr. Joanne Lynn.

As a policy-maker, she served as assistant medical director of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. She is also the co-author of a journal article published by the Hastings Center, a prominent bioethics think tank, that argued that it is permissible to withhold nutrition and hydration tubes from some patients. But, as a practicing gerontologist who makes regular rounds at a 276-bed hospice here, she finds herself caring for precisely those types of patients.

The result is a doctor with profoundly ambivalent feelings, practicing medicine by traditional rules while trying to forge new standards.

On a recent morning, she stopped first in the room of a 100-year-old woman who, among many other ailments, suffers from a massive cancer of the cervix. The patient displayed no indication that she heard or understood what was going on around her. The regular feeding tube was too large and had caused nosebleeds, so liquid nutrients were now being forced through a smaller tube by an automatic pump. She was also being given morphine around the clock to alleviate pain.

“She has a 72-year-old son who insists we do this, so there is no way we can do anything else,” Lynn said. “The son won’t even consider anything else. I’m still working on him about not using (cardiopulmonary resuscitation) if she stops breathing. I know I’m not going to rush her back to a hospital.”

In the next room, Lynn examined an 85-year-old stroke victim, a frail woman curled in a ball, unable to talk or move, being fed through her nose. The one arm she could move was tied down, the hand wrapped in a cumbersome mitten, because she had regularly tried to pull out the tube.

“She has no family,” Lynn said. “She will stay this way to the end. We’re seeking to get a guardian appointed so at least we can get the OK to operate and put the tube straight into her stomach. But that will take at least a year, if we succeed, and, meanwhile, she lies here tied down with that tube. Do you know what it feels like to have a tube up your nose all the time? Let me shove one up your nose. It’s not comfortable.”

The next patient was an 80-year-old stroke victim, also curled, immobile, and fed through a tube, suffering from dementia and a basketball-size bedsore that went through to the bone.

“She has a nephew somewhere,” Lynn said. “He visited once when I wasn’t here. I don’t know how to reach him. What to do? I can’t even find him. I can’t do anything.”

When she completed her rounds, Lynn settled in an office to write her reports. “The wreckage of modern existence--and I take care of it,” she sighed.

But, as she continued to speak, it became clear that her attitudes are not all that simple. “The 100-year-old with cancer--without the son and if the staff here felt OK about it, I wouldn’t be uncomfortable stopping treatment. Or, if she started breaking bones from the cancer, I would be less inclined to continue feedings, because there would either be too much pain, or else too much sedation and she’d be permanently unconscious. But she is aware and pleased when her son is here. She is not permanently unconscious. I can can cause her pain or make her relax. If all I could get from her is pain, I would consider trying to stop treatment. But I can make her happy.”

Why seek to operate on the stroke victim whose arm is tied down?

“Because it could improve her life to untie that arm. I’m not sure, but I don’t feel it’s wrong. If it doesn’t work, then I could discontinue feeding.”

What of the cost, which approximates $22,000 a year for each patient at this hospice?

“In my practice, I don’t draw a limit. As a policy-maker, I wish I didn’t have the equipment, but not as a practitioner. I can’t make a decision that because this one is a derelict, this one beats his wife, this one isn’t smart, they shouldn’t get treatment. I have old patients with multiple ailments on dialysis because it’s there. If I didn’t offer it because of cost and then was sued, the cost issue is not even admissible in court.”

In addition, Lynn wrestles daily with questions of patient competency and preference.

On the one hand, she disparages much of the current reliance on informed consent.

“It is commonly thought now that you should exchange information between the patient and doctor,” she said. “But, in fact, information changes, and people change. Both sides manipulate, and a lot of things get conveyed. Whether you stand up, sit down, are on the phone, have others with you--there are all manners of human communication. I know I can get any patient I’ve worked with one month to do what I want. They trust me.”

On the other hand, Lynn said that, even with the silent, paralyzed patients she saw that morning, “I always have some index of their feelings. I feel God would make us to show our anguish if we don’t want to live anymore. If I can’t see that, I figure it’s not there. I can tell when these patients are in a good mood or bad mood. I look at how they eat, whether they are relaxed.

“I can’t be sure they want to live, but I try to imagine their experience and then try to offer a mode of existence that is better. The key is whether I can improve their lives. I consider what is happening to the patients, what an action will mean to them, what it will lead to. Then I consider what other scenarios could I create. Are some better than others? Only if I cannot improve their situation do I feel it is OK to remove feeding.”

At the end of a grueling day that included a tense staff meeting called to make unusual plans for a lung cancer victim to die at the hospice rather than be rushed to a hospital for emergency treatment, Lynn said she saw no contradictions between her practice and her policy positions.

“I make decisions with great humility, terror and the realization that you’re not always going to be right,” she said. “It’s hard, but we do draw lines. That’s the way public policy gets set. It’s a little sloppy. But just because you can’t set definite, clear standards that fit all cases doesn’t mean you can’t set standards.”