Easing the Burden: Putting End-of-Life Decision-Making in the Hands of Family
A bill going before the New York State Senate this session could be described as 'keeping it in the family,' and perhaps ‘easing the burden': easing the burden of proof and the potential burden of facing court proceedings while making difficult, emotional end-of-life decisions for family members. The bill, which the City Bar has long supported, would change state laws so that end-of-life health care decision-making is in the hands of loved ones and not state courts.
The Family Health Care Decision Act (A.7729-D/S.3164-B) would ease the restrictions on surrogate decision-making for withholding or withdrawing life sustaining measures, while balancing the constitutional need for protecting an incapacitated patient’s rights. The City Bar’s Committees on Health Law and Bioethics have issued a report strongly endorsing the “urgently needed” legislation and urging the Senate to follow the Assembly in passing it.
Current New York Public Health Law Art. 29-C sets up what the Committees call a “powerful and extremely useful instrument” setting standards for “compassionate” delivery of health care to competent adults. It allows for a surrogate to make an end-of-life decision in only five circumstances: (1) When a health care agent has been appointed by the patient or a court, (2) when the patient has completed a written directive, (3) when a family member is acting as a guardian of a mentally handicapped patient, (4) when the decision is to refuse cardiopulmonary resuscitation, and (5) when the decision is made on behalf of a mentally handicapped or developmentally disabled individual. However, without "clear and convincing" proof of surrogacy, family members must often go to court to win such rights.
Sam Servello, Chair of the Health Law Committee, calls the legislation “a needed humanitarian law.” The bill has been around, in various forms, for eighteen years, but has never been passed by the Legislature. This year, it passed the State Assembly and is pending before the Senate.
“It’s a humanitarian and ethical issue, something that deserves to be understood by New Yorkers and deserves our support,” said Servello. “People are suffering who can’t speak for themselves. This legislation would help a very vulnerable population.”
The report presents research showing that many people who would benefit from preparing an advance directive do not do so, nor do they fully understand the need for it. A 2001 study in New York by Sarah Lawrence College showed that even after an educational program explaining the laws, two-thirds of senior citizens responding had not created an advance directive for care, and more than half still thought that family members could make decisions. Seventy-nine percent said that they trusted a family member above all else to make tough end-of-life decisions.
Legal and medical academia has recognized that the courts are ill-equipped to handle end-of-life cases. The process can be slow and prolong suffering of the patient and family, and judges are not usually trained in the medical nature of these decisions. The City Bar’s report explains, "[t]he Bill brings decision making out of the courtroom and to the patients’ bedside," with the courts as a "last resort."
“The imposition of judicial intervention on the deliver of care to an incapacitated patient without a health care proxy is an added unnecessary burden,” said Servello. “This bill is about putting decision-making power in the hands of the family, not the court.”
Read the Health Law and Bioethics Committee’s report here.