Mrs. Clocker had lung cancer five and a half years ago. Last month, she ran a full marathon. This month, she is dying.
She does not understand how this could happen. She had the surgery, of course. She endured all of the chemotherapy without a word. She ate only organic vegetables and grains and free-range chicken. She went back to teaching English. She was told and she believed she was cured.
Now she is in the hospital, and someone else is here to take more blood. She is told she must have a transfusion and take more chemo. Why? Why do they keep taking blood? No wonder she needs a transfusion!
"Where is my doctor?" she thinks. "I want to see Dr. Beale," she tells the nurse. "Nothing until then. Nothing."
Is more autonomy better?
In medicine, autonomy has changed dramatically over the last 50 years. It has gone from a wrong — meaning it is wrong to experiment on people without their consent — to a right — meaning that patients have a moral right to request physician-assisted suicide.
Autonomy has become the most important ethical principle in modern medicine, more than beneficence, integrity, justice or respect for the person. As patient autonomy has risen — for choices of better pain relief, for choices near the end of life, for choices of no-repeat Cesarean section and breast-sparing cancer surgery — physician autonomy has dwindled. A lot.
Physicians sometimes have to fight hard to do what they think is best in a patient's case. Their clinical judgments and choices are questioned daily — hourly, in fact — and a lot of physicians hate it. Yet without more respect for patients' ability to make their own choices, physicians will cede not only their clinical authority to regulators and politicians, but also their basic livelihoods to business people, some of whom are bandits. And bandits have already stolen issues on which physicians should be leaders.
Relief of pain and suffering near the end of life is one issue for physician leadership. Every physician can prevent the invasion of last-moment medical technology that serves to delay a patient's death only briefly. Every physician can recognize that a devastating stroke, not a decision to honor a family's request to discontinue a mechanical ventilator, is the cause of that patient's death. These are issues that physicians should champion and choose for patients.
A matter of trust
Championing patient values means shared decision-making instead of unilateral judgment. But there can be no shared decision-making without trust, and patients still want to trust. So do physicians. There are often moments in which a patient leans close or averts his eyes and says, "This is just between us, right?" Those moments are times in which putting down the pen allows the physician to listen just a little better, and to decide with the patient what will go in the record and what will not.
Trust seems to be one of the few principles that still anchor physicians and patients and leave room for choice. Managed care seems to narrow choices to those available by contract, not by covenant. Some financial incentives are too much for any physician to bear: small risk pools, large withholds, few colleagues with whom to share risk. No physicians should be subject to these incentives.
If physicians remain patient advocates, they cannot avoid difficult financial decisions and conflicts of interest. Yet professionalism and the self-esteem that comes from doing what is right remain reasons for deserving patient trust.
Physicians are still the best advocates that patients have — and the only ones who care primarily about patient well-being. What is autonomy, physicians reason, if it isn't choice of physician?
To many patients, autonomy is not choice of physician, but of health plan. This is a step backward, for it should not be either/or — but both. Point-of-service plans can solve some problems of autonomy and should be encouraged. Employers in the 1980s, however, spoke loud and clear about outrageous costs, and demanded fewer treatments with fewer choices from health plans.
The tradeoff for patients: choice of physician. The tradeoff for physicians: choice of treatment. For now.
Autonomy: the road ahead
That afternoon, Dr. Beale had messages from the nurse, utilization management, the HMO medical director, Mrs. Clocker's husband, and two of her three daughters. He went back to the hospital at 8 p.m., walked in the room and looked at gaunt, tough Mrs. Clocker staring at him.
"This has been a hard day for you, hasn't it?" Dr. Beale said.
Mrs. Clocker's folded arms and tight jaw eased a little. If he could see what she could see! Her daughters without their mother, her students erring on their present participles, her running shoes sitting empty. Tears gathered in her eyes.
"I would be surprised if someone with a cancer in the lung wasn't frightened," Dr. Beale said, sitting down next to Mrs. Clocker. "We have some choices to make."
Autonomy has had a meteoric rise. Much of this is good — the more patients know about the care they and their employer have purchased, the better decisions they can make about care. But unchecked autonomy is not good — resources are limited, and people cannot lunch every day at a community buffet of endless individual portions.
Inform, ask and document
What can clinicians do to promote patient autonomy and, at the same time, preserve some of their own?
- Honor patient autonomy when it is about personal choices. Make sure the information patients have is not misinformation gleaned from television spots.
- Learn from patients' experiments with over-the-counter treatments, and share information with colleagues about better practices. Document patients' desires to choose their own course.
- Solicit patient preference by asking for the patient's opinion, understanding, interpretation and own words. Say something like, "What do you think it is?" or "Tell me more about that," or "Go on," or "What else?" or "What do you think about taking this new medicine?" Don't wait for patients to ask you. Ask them.