New York -- Tens of millions of health-care dollars are spent each year tending comatose patients on life-support systems who will never recover. A high percentage of these people would probably have rejected the care, had they had the choice.
For this reason, the new Patient Self-Determination Act should, if properly used, be a potent force for cost control. The question is whether it will be used properly. At present, less than half the hospitals are complying with the new law, estimates Arthur Caplan of the Center for Biomedical Ethics at the University of Minnesota.
Since last Dec. 1, the following information is supposed to be given to all competent adults who enter a health-care facility that receives any Medicare or Medicaid funds:
* Written information explaining your rights under state law to accept or refuse treatment, and to prepare an advance directive about what you want.
* Written information about the facility's policies that might supersede your wishes.
Hospitals and nursing homes have to provide this information when they take you as an inpatient. When to talk with patients admitted unconscious hasn't been resolved. The law also applies to health maintenance organizations, hospices and home-health workers such as visiting nurses. Whether you have an advance directive must be noted in your medical record.
When asked, large majorities of people would pull the plug on themselves. A recent study of 405 outpatients at Massachusetts General Hospital in Boston found that 79 percent would refuse life-sustaining treatment if they had dementia, 87 percent if dementia were combined with a terminal illness, and 85 percent if they were in a persistent vegetative state.
A living will informs your doctors of your preference. You may also empower someone to decide on your care, through a durable power of attorney for health care.
Many hospitals have strong patient self-determination programs. At the University of Chicago Hospitals, patients are asked when admitted whether they have a health-care directive. If so, it's noted on their charts and a copy is placed on the chart. If not, they get an explanatory brochure and two free blank forms -- one for executing a living will, one for naming a durable health-care power of attorney.
But there are many impediments to reaping the full benefits of this new law and of health directives in general:
* The hospital needn't have health-directive forms on hand. You may be given a brochure and not encouraged to express an opinion.
* The hospital may not comply with the law. The director of critical care at a major New York hospital said that, strongly as he supports patients' rights, his hospital lacks the money and personnel to implement the program.
* Some state health departments have prepared cumbersome information packages, which the health providers have to rewrite for patients. That can take a while.
* The hospital may have a policy against, say, removing feeding tubes. If you're brought in by ambulance, inserting the tube makes perfect sense. If your case is hopeless, however, your family may be unable to get you unplugged.
* In emergencies, hospital personnel may not look at a patient's directive. Or the directive may be left behind when a patient goes from a nursing home to the hospital.
* The directive may be ignored deliberately. That could happen when the doctor's judgment deviates from that of the patient or when relatives override the wishes of a comatose patient. A study last year of 175 nursing home residents in North Carolina found that doctors went against patients' wishes 25 percent of the time. In a few cases, they treated more aggressively; in the majority of cases, less aggressively.
Still, the more people who execute advance directives, the more attention will be paid to end-of-life procedures. So when the hospital talks to you about self-determination, take the time to think it through.