Of course, this involves more than life-sustaining treatment. Choices about the whole range of health care -- whether to do a hip replacement, cataract surgery, selection of medication, etc. -- are affected.
At that time, many legislators were eager -- as I was -- for a bill that would take the sensible next step: recognize the right of a patient's family to stand in if a patient loses, or never had, capacity to make health care decisions and did not fill out a health care proxy. After all, if the family can't speak for the patient about those choices, who should?
In 1987, we had enacted a law that took a small step in that direction. The "Do Not Resuscitate" law allows family members to consent to an "order not to resuscitate" for a patient.
The Governor's Task Force on Life and the Law, which drafted the DNR and Health Care Proxy laws, proposed the Surrogate Decision-making bill in 1992. Over the next several months, the Assembly Health Committee held hearings on the bill around the State. The Governor submitted it as a program bill in 1993; I have introduced it along with 48 co-sponsors in both parties.
The support for A.6791 is overwhelming, from a broad range of patient advocacy groups, senior citizen organizations, religious groups, health care providers, etc. Attached is a list of some of the diverse organizations that support the bill.
Some people call bills like Health Care Proxy or Family Health Care Decision-making "right to die" legislation. But actually, New Yorkers have had the recognized "right to die" -- to refuse life-sustaining treatment -- for decades. It is part of the profound constitutional and common-law right we all have to make our own health care choices.
Legislation is needed because, more and more often, patients live on after they have lost capacity to make health care decisions. Yet decisions about treatment continue to get made for them, but they are made by doctors, hospital administrators, occasionally judges -- strangers. They often consult the family. But the family -- astonishingly -- really has no legal role.
Under New York law, family members can only speak up for the patient if they were appointed under a Health Care Proxy or if they can prove by "clear and convincing evidence" (just short of "beyond a reasonable doubt") what the patient's wishes were.
The bill would establish procedures authorizing family members or other persons close to patients who lack decision-making capacity to decide about treatment, in consultation with health care professionals and in accord with specified standards.
Many elements in the bill are drawn from the DNR and Health Care Proxy laws.
The bill lists, in order of priority, the persons who may act as surrogate: a court-appointed guardian, spouse, adult son or daughter, parent, adult brother or sister, or close adult friend or relative familiar with the patient's personal, religious and moral views. The highest-ranked available person on the list would act as surrogate. If the patient had appointed a health care agent under the proxy law, that agent would prevail.
The surrogate steps in only if the patient's lack of capacity has been determined by the attending physician (under some circumstances confirmed by a second physician or health care professional) or a court order. At any time, though, the patient may overrule the determination of incapacity or any surrogate decision, unless a court rules otherwise.
The surrogate can make decisions about treatment the same as the patient or a health care agent could, with some limitations. Decisions must follow the patient's wishes and moral and religious beliefs, if known, or be in the patient's best interests.
The surrogate may only refuse or withdraw life-sustaining treatment if it would be an excessive burden to the patient in light of the patient's wishes or best interests, and one of the following exists: the patient is terminally ill or permanently unconscious; the treatment would involve inhumane pain, suffering or other burden; or it is the patient's known wish.
The bill includes extensive procedures and safeguards for various special circumstances relating to minors, patients with no available surrogate, people with mental illness or developmental disability, people in nursing homes, etc. I invite you to read through the bill's memorandum of support and the bill itself.
The Task Force on Life and the Law is an exceptionally able group of physicians, lawyers, religious leaders and lay people from a wide variety of backgrounds and beliefs. The Family Health Care Decision-making bill, like the DNR and Health Care Proxy laws the Task Force drafted, is a thorough, well thought- out and careful piece of legislation.
The Family Health Care Decision-making bill has been before New Yorkers for over two years. There have been public hearings around the State. Every group has had an opportunity to recommend refinements, and many have been incorporated.
A.6791 has won extraordinarily broad support from organizations and interests that frequently disagree on many issues.
I believe it is time to move the bill forward for enactment.
Very truly yours,
Richard N. Gottfried
Chair,
Assembly Health Committee