Testimony on Family Health Care Decisions Act
Carl H. Coleman
Professor of Law and Director, Health Law & Policy Program, Seton Hall Law School
Steering Committee
Member, Family Decisions Coalition
December 8, 2005
The legislation would enable family members and others close to the patient (a surrogate) to decide about treatment for incapacitated patients who have not signed a health care proxy or left specific oral or written treatment instructions (such as in a living will).It would also cover treatment decisions for patients who have no available family or friends to decide for them.
The proposal is consistent with statutes already on the books in the District of Columbia and 35 other states.Most states that do not have statutes like the Family Health Care Decisions Act have case law that grants family members and others close to the patient similar authority.
Currently, family members in New York have no legal authority to consent or object to medical treatment for a patient who lacks decision-making capacity.Although hospitals and other providers customarily turn to close family members for agreement, only courts, court-appointed guardians, and health care agents (i.e., persons appointed by a health care proxy) have real legal authority. Otherwise, the physician is the effective decision-maker for a patient who cant give consent.
Moreover, caselaw in New York law provides that life-sustaining treatment can be withdrawn or withheld from an incapacitated patient only if the patient signed a health care proxy or left clear and convincing evidence of his or her wish to forego treatment.Otherwise, no one not the patient's family, not the patient's physician, not even a court has authority to withhold or withdraw life-sustaining treatment for a patient who lacks decision-making capacity.Most people never sign a proxy or leave this kind of evidence.
As a result of current New York law, some incapacitated patients are denied appropriate treatment, while others are subjected to burdensome treatments that violate their wishes, values, or religious beliefs.
The proposal was developed by the New York State Task Force on Life and the Law, a nationally recognized interdisciplinary commission created by Executive Order in 1985. The Task Force is a nonpartisan commission made up of physicians, nurses, lawyers, bioethicists, religious leaders, patient advocates, and community representatives.New Yorks health care proxy law and do-not-resuscitate laws were both based on Task Force proposals.
The Task Force spent approximately four years developing the Family Health Care Decisions Act.During this time, the Task Force members met monthly to discuss the relevant issues and consider draft language, with their work supported by a full-time professional staff.In addition, throughout this process, the members and staff regularly sought input from a broad range of interested parties.The Task Forces proposal was first released in the spring of 1992 as part of a comprehensive 288-page report.Following extensive public hearings, the proposal was modified in 1993, and the Task Force published a shorter report explaining the reasons for these modifications.Additional changes to the bill have been made over the past 12 years in response to concerns raised by legislators and other interested parties.
The bill enjoys widespread support among patient advocates, health care providers, religious leaders, and other interested parties.Nearly 50 organizations are now members of the Family Decisions Coalition, and the list is growing.
While the proposal has had longstanding support in both houses, for most of the bills history there have been small differences between the Assembly and Senate versions. Last session, those differences were resolved, and late in the session identical bills were submitted.
Most of the changes made to resolve the Assembly and Senate versions of the bill dealt with minor, technical issues.However, two of the changes deserve specific discussion.
First, the bill now includes language addressing incapacitated patients who are pregnant and whose wishes about treatment are unknown.(If the patients wishes are known, the bill is clear: those wishes must be respected.) The new language provides that if the patients wishes are unknown, the surrogates assessment of the patients best interests shall include the impact of treatment decisions on the fetus and on the course and outcome of the pregnancy. For example, if there is a choice of medications, and one of them has a potential adverse effect on the fetus, the surrogate should consider this in deciding which medication would be appropriate just as the patient would undoubtedly do herself, if she had decision-making capacity.
It is important to keep in mind that the language about pregnancy appears in the section of the bill that defines the patients best interests, the standard that governs decisions for patients whose wishes are not known and cannot reasonably be determined.The purpose of the best interests definition is to make clear that, if the patients wishes are unknown, the surrogate should consider factors that a reasonable person in the patients position would be likely to consider.The definition includes numerous factors that surrogates would almost certainly consider even if they werent mentioned in the bill, such as the dignity and uniqueness of every person and the possibility and extent of preserving the patients life. The reference to the impact of treatment decisions on the fetus and the pregnancy is just like these other factors: it is something that any responsible surrogate would consider regardless of whether it was specifically mentioned in the statute, since it is something that the patient, if she had decision-making capacity, would consider herself.
Note that the bill does not tell the surrogate how to consider the impact of treatment decisions on the fetus and the pregnancy; it simply lists this as one of many factors that a reasonable person in the patients position would consider for herself.Thus, if the surrogate concludes that, despite a medications potential adverse effect on the fetus, the medication would improve the patients medical condition, the surrogate has the authority to consent to it.Moreover, the bill clearly states that it is the patients best interests that are being considered. It specifically provides that in all cases, the surrogates assessment of the patients wishes and best interests shall be patient-centered; health care decisions shall be made on an individualized basis for each patient, and shall be consistent with the values of the patient, including the patients religious and moral beliefs, to the extent reasonably possible.
Thus, while some people have raised concerns that the bill would constitute a precedent for fetal rights, it in fact does no such thing.Instead, it affirms the rights of all patients, including pregnant women, to receive the treatment they would choose if they were capable of doing so directly.
Another change made towards the end of the last session has to do with the process of identifying the surrogate decision-maker.Earlier versions of the bill contained a priority list, beginning with the spouse, moving down through other blood relatives (such as adult children or siblings), and then and only then a close friend of the patient who is not related by blood or marriage.A few years ago, the Assembly version of the bill was modified to include domestic partners on the list at the same priority level as spouse.The Senate sponsors were reluctant to make this change.
Supporters of the bill therefore began exploring alternative approaches that would protect the rights of persons in non-marital relationships.To this end, we looked at how other states have dealt with this issue, and we found that, in a few states, the law does not contain any priority list; instead, the statute simply directs the hospital to appoint the person best suited to representing the patients wishes and best interests, without giving any presumptive preference to spouses, domestic partners, or anyone else.While we had concerns with the specific language of these statutes, we found the idea of eliminating the rigid hierarchical list appealing not just because it might help overcome the political problem with the Senate, but because there are many situations in which following a rigid hierarchy could lead to inappropriate results. This would be true even if the list included domestic partners on the same level of spouse.For example, consider an unmarried couple living separately, or lifelong friends who consider each other family. In fact, there are many couples, whether same-sex or opposite-sex, who consider themselves partners but who do not live together, do not own property together, and are not financially co-dependent. Under the hierarchy approach, persons in such relationships would probably not qualify as domestic partners, and would therefore automatically have been lower in priority than any of the patients blood relatives, even relatives who have been estranged from the patient for decades.
The bill was therefore changed as follows:If the patient has a court-appointed guardian, the guardian would be the surrogate.If there is no guardian but, before losing capacity, the patient indicated orally who should act as the surrogate, that person would be the surrogate.For all other patients, the surrogate would be a close relative or close friend of the patient whose designation as surrogate reasonably appears to accord with the patients wishes or, if the patients wishes are not reasonably known, the patients best interests.
Some Assemblymembers have raised concerns that, as modified, the bill essentially lets the hospital pick whoever it wants to act as the surrogate.That is not accurate.First, health care providers and patient advocates agree that, in the vast majority of cases, hospitals, family members, and friends agree about who should be speaking for the patient; under those circumstances, that person would be designated the surrogate. In reality, disputes like the Terri Schiavo case are extremely rare. In the unusual situation where such a dispute arises, the bill requires the hospital to choose the person who is best able to advocate for the patients wishes and best interests.Moreover, hospitals would have to provide a mechanism for a close relative or a close friend who is not designated surrogate to demonstrate that his or her appointment as surrogate would better accord with the patients wishes or, if the patients wishes are not reasonably known, the patients best interests. Hospitals could not deviate from these standards even if they have religious or moral beliefs that favor certain types of family relationships.Finally, anyone dissatisfied with the designation of the surrogate would have the right to seek mediation in the hospital ethics committee or to challenge the decision in court. This option was also available even when the bill had a priority list. Therefore, in the real world, the present version of the bill would operate much the same as the older versions that contained a priority list.