A year ago, the bipartisan efforts of Republican Sen. John Danforth and Democratic Sen. Daniel Patrick Moynihan resulted in a law that should help give Americans more control over health-care decisions at the end of life.
The Patient Self-Determination Act (PSDA), which goes into effect Dec. 1, requires that people entering health-care facilities be informed of their rights to refuse medical treatment, as well as whatever rights their state provides for drawing up advance directives such as living wills or health-care proxies.
The intent of the new law is to educate people -- not to require people to sign living wills or other documents.
That might sound like just another half-hearted attempt to get a message across to the public. But medical institutions around the country seem to be taking this mandate seriously. Their efforts to inform and educate patients will undoubtedly do more to make Americans aware of their rights and responsibilities in preparing for end-of-life decisions than all the headlines about Jack "Dr. Death" Kevorkian's suicide machine or the publicity about voter referendums on physician-assisted suicide.
Even though government regulations for implementing the law have not yet been issued, the law's provisions are simple enough. Advance word is that the regulations will be equally simple, and the delay in issuing them is not expected to effect the implementation of the law.
But the law also requires the Department of Health and Human Services to develop a national education campaign on the subject and to assist each state in providing a summary of its laws regarding advance directives and refusal of treatments. So far, not much has happened on this front; it looks now as if the success of the law will depend on efforts by states and health-care institutions themselves.
In brief, here's what the PSDA means for you:
When you are admitted to a health-care facility -- such as a hospital, nursing home or hospice -- you will be given written information about your state's laws regarding living wills or the appointment of a family member or friend with the legal power to make decisions about your treatment in the event you become unable to do so yourself.
If you do not have such a document, you will be given an opportunity to draw one up -- but only if you want to. No one is required to have one, but your medical records must indicate your decision. If you do choose to have such a document, it should be included in your record.
You will also be given written information about the facility's policies about implementing advanced directives. These procedures may vary.
The law also stipulates that the existence or non-existence of an advanced directive should not affect the care offered to patients or become the basis for discrimination. In other words, if you have indicated in a living will that you do not want the hospital to prolong your life if your chances for recovery appear to be non-existent, the hospital cannot use the document to rush to judgment about your condition.
Each year, about 2 million Americans die. Approximately 80 percent of those deaths take place in institutions, and 70 percent are the result of a decision made by someone other than the patient.
More and more Americans have learned the hard way how these end-of-life decisions can turn into nightmares for families and friends. By ensuring that each patient is given an opportunity to make his or her wishes about life-sustaining treatment known in advance, Congress may have done a great deal to ease some of the well-founded fears about the American way of institutional death.