PERSPECTIVE ON MEDICINE : Go Easy on Patient Empowerment : Being hospitalized now means hearing about life-support options; this shouldn’t be a bureaucratic terror.
People who enter hospitals and other health-care facilities are experiencing something new: admissions personnel asking whether they have a “living will” or other advance directive about what should be done if they are near death or permanently unconscious.
For patients having routine tests or surgery, or for mothers giving birth, these new questions--and accompanying information about patients’ rights to refuse treatment and to make advance decisions--may be puzzling, even alarming. Why this question about refusing life support from a clerk who usually just asks about insurance? Am I that sick?
The questions are required by the federal Patient Self-Determination Act, which went into effect Sunday. Despite the possible alarm that may be created by the first impression, this isn’t a “right to die” law. It only aims to make people aware of the rights they already hold under state laws. Its success will depend on how it’s implemented.
One of the act’s sponsors was Sen. John Danforth (R-Mo.), who saw up close the anguish of the Cruzan family as they faced the refusal of a Missouri hospital to discontinue the tube feeding that had kept their daughter, Nancy, alive in a vegetative state for years. The state’s highest court said that the Cruzans lacked “clear and convincing evidence” of what their daughter would have wanted. The U.S. Supreme Court upheld the decision, affirming that states have wide latitude to set rules and procedures concerning life support for people who can’t speak for themselves.
Most states have adopted laws that allow competent adults to execute advance directives. California’s law, one of the most wide-ranging, allows residents to direct doctors to forgo life-sustaining measures, including tube feeding, in the event of terminal illness or permanent unconsciousness. Californians may also, under the Durable Power of Attorney in Health Care statute, appoint an agent to make decisions about medical treatment, including life support, if they are incapacitated.
The problem, Congress saw, was not an absence of legal rights, but too little public awareness. Most Americans say that they would like to have some sort of living will, but few have written one. That’s why the new law requires all hospitals, skilled nursing facilities and health-maintenance organizations that take Medicare or Medicaid to give patients written information about their rights in health-care decisions, and to disclose the institution’s own rules about implementing such advance directives.
So, there’s no reason to be alarmed by this line of questioning; it doesn’t indicate a poor prognosis and it doesn’t oblige a patient to fill out any directive. Indeed, the law forbids discrimination in care or in provision of health insurance on the basis of whether people have made advance declarations.
However, the new law will be effective only if the information is given clearly and in a manner that doesn’t further upset people who may already be scared and confused. The people who provide the information must believe in what they are doing, not just speak words to satisfy a law.
In California, the task is made a little easier because a statewide group of health-care providers, health professionals, patients and state health officials has put together a basic brochure, titled “Your Right to Make Decisions About Medical Treatment,” that must be given to every patient. This assures that every one gets the same accurate information in a simply written question-and-answer format. It is also being translated into Spanish and 10 other languages.
The brochure alone, however, isn’t enough. Hospital personnel need training to answer patient’s questions. Better yet, doctors should have the brochures in their offices and talk about health-care choices with patients before they’re hospitalized. Leaving the job entirely to hospitals won’t do much good for patients who enter already unconscious or critically ill--precisely the people who may have need of advance directives.
The prospect of a lingering death distresses most people. But tens of thousands of Americans are in this condition every year, supported by respirators and feeding tubes, without prospect of ever recovering. The people who care for them are simply paralyzed by not knowing what the patient would have wanted.
But under the new law, once patients get over the surprise of being asked about their plans, they can assure themselves that they won’t end up like Nancy Cruzan.