Press Release:

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Provides for Life-Sustaining Treatment Options For Persons with Mental Retardation

Governor George E. Pataki today announced that he has signed into law the Health Care Decisions Act for Persons with Mental Retardation, legislation that will allow for court appointed guardians of persons with mental retardation to "withhold or withdraw life-sustaining treatment" in order to alleviate extraordinary suffering when there is no hope of recovery for the individual.

"This legislation will help ensure that people with mental retardation and their families will be able to make decisions on their own behalf that are in the best interest of terminally ill people", Governor Pataki said. "The Health Care Decisions Act will provide the mechanism through which the most difficult health care and end-of-life decisions can be made on behalf of people who were never capable of expressing their personal wishes and who might otherwise suffer prolonged and painful deaths."

The bill amends Section 1750 of the surrogate's court procedure act and creates a legal process so that individuals who lack the capacity to have ever completed an advance directive or to have left clear and convincing evidence of their wishes regarding end-of-life decisions can have their interests represented and carried out. The law also provides for appropriate safeguards designed to ensure that authority for making decisions to withhold or withdraw life-sustaining treatment is exercised only in rare and appropriate cases.

Prior to the enactment of the Health Care Decisions Act, life-sustaining treatment could be withheld or withdrawn from a patient only if the patient left "clear and convincing evidence" when he/she was competent that he/she would have wanted to terminate life-sustaining treatment under the circumstances. Many people complete an advance directive, such as a living will, that will serve as a statement of their wishes should they become incapacitated. Unfortunately, many persons with mental retardation lack the capacity to have ever completed such an advance directive.

Senator Kemp Hannon said, "The Health Care Decisions Act allows guardians of people with mental retardation to make the full range of health care decisions for the people under their care. It ensures people with mental retardation have the same rights as anyone else when it comes to health care."

Senator Thomas Libous said, "We're compassionately ensuring that the families of persons with mental retardation have the ability to make decisions that are best for them in tough situations. Governor Pataki has once again shown his commitment to protecting and helping vulnerable New Yorkers by signing this legislation into law."

Thomas A. Maul, Commissioner of the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) said, "This is a compassionate law that takes into account the fact that the parents and family members who will be making these difficult decisions have cared for every need and every desire for their loved one since birth. Until now, they could make decisions about how their family member would live, but, even under the most extraordinary circumstances, could not make decisions about how they would die. Governor Pataki has once again demonstrated a deep sense of commitment and understanding for individuals with disabilities in signing this legislation. He has given people with mental retardation a chance for dignity in death."

Through the Health Care Decisions Act, court-appointed guardians can make decisions to terminate life-sustaining treatment on behalf of persons with mental retardation when it is in the "best interests" of such persons and not contrary to their wishes. Under the bill, life-sustaining treatment could be terminated only if the patient's attending physician, with the concurrence of another physician, determines to a reasonable degree of medical certainty that: (1) the patient lacks the capacity to make such a decision; (2) the patient has a terminal or irreversible condition; and (3) the continuation of life-sustaining treatment would impose an "extraordinary burden" on the patient.

A guardian's decision to terminate life-sustaining treatment would be suspended, pending judicial review, if an objection was made by the attending physician, a parent or adult sibling of the patient or certain other interested parties listed in the bill.

Joan Taylor, a parent who fought for the passage of the Act applauded the Governor's action saying, "This is a most significant piece of legislation, because it changes the State's ability to allow mercy where none could be allowed before. I will forever be grateful to Governor Pataki for his empathy, for taking the time to really understand the issues, and for acting on behalf of those who don't have a voice of their own. Thanks to the Governor, teamwork with NYSARC, and grassroots advocacy at its best, we parents now have hope for the future of our loved ones. For me, this is very personal issue, since my son, who has mental retardation and has been dependent on a G-tube for 18 years as his only source of nourishment, could well be the next person in need of this compassionate law. I now have peace of mind, knowing that, even if I am no longer around, my daughter can step in, and together with the courts and through this law, make decisions on his behalf."

The law further asserts that the first responsibility in these situations is to sustain life, stating that "the guardian shall have the affirmative obligation to advocate for the full and efficacious provision of health care, including life-sustaining treatment." Therefore, the Health Care Decisions Act would apply only after such efforts to sustain life had been exhausted.

Mark Brandt, Executive Director of NYSARC (formerly the NYS Association for Retarded Citizens) said, "Thousands of parents and families across the State are deeply indebted to Governor Pataki for the most profoundly important piece of legislation benefiting persons with mental retardation in decades. We believe that this establishes a national model for making all health care decisions in the best interest of these individuals. It will allow parents and families, subject to appropriate oversight, to continue a pattern of life-long care and devotion for their children with mental retardation during their child's neediest moments. It re-establishes their families as the focus of the most important decisions that can be made on their behalf."

Contact:
NYS OMRDD
Deborah Sturm Rausch
Director of Public Affairs
518-474-6601