Patients Gain Control Over Extent of Care

In an effort to resolve ethical dilemmas raised by advanced medical technology, patients in hospitals and other health care institutions nationwide beginning Sunday will be able to make life-and-death treatment decisions in advance, or designate a relative or guardian to do it for them.

A new federal law, the Patient Self-Determination Act, goes into effect that day. It has been enthusiastically embraced by California health care leaders, who have developed what many authorities say is a model program for implementation.

The law requires that written information be provided to patients, acquainting them with their right to make decisions about the type and extent of medical treatment. Besides hospitals, other health care institutions required to provide such information include nursing homes, hospices and home health care agencies that receive Medicare or Medicaid funds.

In California, patients will be handed a simply worded brochure, “Your Right to Make Decisions about Medical Treatment.” It covers questions patients might ask, including: Who decides my treatment? How do I know what I want? What if I am too sick to decide? What if I change my mind?

The brochure provides general answers and urges patients to discuss specific treatment possibilities, risks, side effects and long-term consequences with their doctors. If a patient decides he or she does not want certain treatments--say, artificial nutrition during an irreversible coma--the patient can request a second document, called a durable power of attorney for health care.

Patients can use this legally binding document to designate a family member or other individual to make life-or-death treatment decisions for them. They can also specify conditions under which life-sustaining treatment should be withdrawn.

“In a medical environment that has provided increasingly less control, the (law) is about taking back control of your life,” said Charles P. Sabatino of the American Bar Assn., which backed the legislation and is tracking state preparations to implement it.

Congress passed the law just as the parents of a Missouri woman, Nancy Cruzan, were winding down a long legal battle to have their comatose daughter disconnected from feeding apparatus. The 33-year-old woman had existed in a vegetative state for eight years after an auto accident left her severely brain-damaged. Missouri law required proof of a patient’s treatment wishes under such circumstances, and Cruzan’s casual remarks to friends and family about such matters initially were not persuasive to the state courts.

The family appealed to the U.S. Supreme Court, but the justices declined 5 to 4 to overrule the Missouri court. Last December, provided with additional evidence that Cruzan would not have wanted to continue such an existence, a Missouri probate judge granted her parents’ request to stop artificial feeding. She died on Dec. 26.

Each state must come up with its own plan to implement the law. California, with a long history of leadership in right-to-die legislation, has put together what is widely considered the most comprehensive and “user friendly” of all of the plans. A broad-based coalition, headed by the Pacific Center for Health Policy and Ethics at USC, developed the plan.

“It is excellent,” said Fenella Rouse, executive director of the New York-based Choice in Dying. “We are recommending it for other states to follow.”

Those who wrote the instructive documents for patients in California hospitals and nursing homes say they have fielded more than 25 requests from other states and health care organizations for copies of the material.

“We are very enthusiastic about it,” said Robin Tucker, legal counsel to the Kaiser Foundation Health Plan, the nation’s largest health maintenance organization and one of 25 members of the coalition that drafted California’s plan. “It empowers patients to participate in decisions about their health care, and it encourages them to think about these issues and discuss them with their families.”

Handing out a brochure as an anxious, possibly pain-racked patient is admitted to a hospital can only be considered a first step, advocates say, toward the kind of thoughtful dialogue about life-and-death issues that may face patients.

Susan Harris, vice president for professional and clinical services at the California Assn. of Hospitals and Health Systems, said seminars are being held for hospital and nursing home staff to prepare them to help patients understand their options, and to make sure the patients’ “advance directives” are not ignored. Besides the durable power of attorney, such directives include living wills, natural death act declarations, and even instructions written by a patient on a piece of paper.

In addition, the statute calls for health care institutions to launch community education projects so people can learn about their medical decision-making rights before being hospitalized with life-threatening injuries or illness.

These requirements were built into the law to prevent it from ending up as a mere paper shuffling exercise, said Alexander M. Capron, an expert in law and medicine and co-director of USC’s Pacific Center.

Capron said that in developing the patient brochure and policy manual for health care institutions, his group sought to avoid intimidating legalistic language. Patients already are confronted with that when they are asked to sign so-called informed consent documents--indicating that they are aware of every possible thing that could go wrong with surgery or other treatments.

“It’s often being (presented) to them right before surgery,” said Capron of the consent forms, reducing their meaning to “the legal equivalent of a Fleet’s enema.”

Capron and others are optimistic that health care institutions will take greater care in implementing the patient self-determination act. Self-interest, if nothing else, provides the motivation. Said Capron:

“This is an opportunity to increase patient education and avoid some of the nightmares down the road: having patients lie for days and months with families wringing their hands and saying: ‘We don’t know what Uncle Joe wants. We never talked to him about it.’ ”