Roseanne Beovich, Esq.
Almost two decades into the twenty-first century, it is easy to take for granted our rights to self-determination in the context of our own personal health care. As a result of the “common law principle that ‘every individual of sound mind and adult years has a right to determine what should be done with his [sic] own body,’” a “firmly established right to accept or reject medical treatment” has long been recognized for “competent adults.”[i] However, for individuals who lack capacity, this right was not always recognized, often times forcing individuals to be subjected to treatments that went against their beliefs and desires. Unfortunately, the imposition of unwanted medical treatment still happens today in the context of incapacitated patients who reside in hospitals or nursing homes due to an apparent conflict between limitations placed on the powers of a guardian in some court jurisdictions versus the standards set forth under the Family Health Care Decisions Act.
New York’s Family Health Care Decisions Act (FHCDA) was first introduced to the New York Legislature in 1993. After various attempts, reintroductions, and amendments in the years following, the FHCDA was signed into law on March 16, 2010.
The FHCDA reflects a major departure in who and under what standard life sustaining treatment may be terminated for a mentally incompetent person. The FHCDA statute reflects a major change from the prior “presumption of life.” Previously, absent indication from the principal to the contrary, a “presumption of life” applied. Here, absent such indication, a “presumption of termination” applies, especially by deprivation of artificially administered food and water.[ii]
The intent of the FHCDA was to “‘[fill] a gap that remains in New York law’ and establish a decision-making process applicable for patients lacking decision-making capacity and without advanced directives in hospitals and nursing homes.”[iii] The FHCDA allows surrogate decisions regarding the withdrawal or withholding of life-sustaining treatment based on substituted judgment/best interests subject to the standards set forth in the statute.[iv] Guardians pursuant to Article 81 of New York’s Mental Hygiene Law (MHL) are given the highest priority to act as a surrogate decision maker, followed by various family members and other persons close to the patient.
In enacting the Guardianship statues in the early nineties, the legislature found that “the personal wishes, preferences and desires of the person” should be followed when making determinations on behalf of individuals with incapacities. Historically, decisions to withdraw life-sustaining treatment made by court-appointed guardians have been held to the clear and convincing standard. However, this standard is at odds with the legal and medical framework standards set forth in the FHCDA, which has become problematic in various circumstances.
Reconciling the “Clear and Convincing” and “Medical-Legal” Standards
Guardians are generally appointed for a variety of reasons and, as the authority of a Guardian of the Person extends well beyond the authority to make medical decisions as granted by the Family Health Care Decisions Act, the appointment of such a Guardian is often warranted to ensure the complete protection of an incapacitated individual’s interests. In some instances, it is a family member that has been appointed as a guardian for an incapacitated individual. Being appointed as Guardian, a family member is put in the first position of possible surrogates listed in the FHCDA. Although one would suppose that holding the top priority as the surrogate decision maker would expand one’s powers, in some counties within the state, it has actually limited a family member’s ability to make health care decisions, in particular decisions with regard to life sustaining treatment.
As an elder law attorney practicing across various counties within New York, it has become evident that in practice, the FHCDA has been interpreted differently across the counties throughout the state. When dealing with end of life decisions, because the language in the FHCDA states, “[a] guardian authorized to decide about health care pursuant to article eighty-one of the mental hygiene law,”[v] some counties have interpreted this to mean that such decisions must comply with the standards expressed under Article 81, therefore holding guardians to the common law “clear and convincing” standard while other counties apply the statutory, less restrictive legal and medical standard set forth in the FHCDA.
With the passage of the FHCDA, in addition to the adoption of new standards for decisions regarding life sustaining treatment, the bill repealed section 81.29 of New York’s Guardianship statutes and amended the “personal needs” provisions in section 81.22.[vi] According to the amended section 81.22 regarding personal needs powers, for decisions in hospitals and residential health care facilities, “the court . . . may grant to the guardian . . . the power to . . . act as the patient’s surrogate pursuant to and subject to [the FHCDA].” Based on the inclusion of the changes to the Guardianship statutes with the passage of the FHCDA, it would appear that the “clear and convincing” standard no longer applies to personal needs decisions.
However, present day experiences with Guardianship Courts across the state of New York reveal that the counties are interpreting these rules in different ways. Some counties, for example, include a limitation on decisions regarding the withholding of life-sustaining measures. For example, the language included in one such county’s Guardianship Order states that the guardian may “Consent to or refuse generally accepted routine or major medical or dental treatment on behalf of [the incapacitated person], except for the power to consent or authorize, in the absence of further order of the Court, withholding or withdrawal of life sustaining treatment or to the implementation of either a Do-Not-Resuscitate or Do-Not-Intubate Order.” Arguably, this goes against the FHCDA which states that there is a presumption in favor of termination unless there is evidence to the contrary.
A Present Day Case Study
Mrs. Wilson’s husband[vii] was named the Guardian of her Personal Needs and Property Management. However, the Court limited Mr. Wilson’s powers regarding the withholding of life-sustaining treatment, requiring further Court order in such event. Mrs. Wilson was a woman in her sixties diagnosed with early onset Alzheimer’s disease who exhibited end-stage dementia. Mrs. Wilson required increased levels of residential care as her condition was quickly deteriorating and she required frequent hospitalizations. Mr. Wilson, as Mrs. Wilson’s husband and Personal Needs Guardian, was asked by both hospital staff and nursing home staff to complete a MOLST (Medical Orders for Life Sustaining Treatment) form on her behalf in the event of an emergency. However, Mr. Wilson did not have authority to execute a MOSLT because of the provision in the Guardianship order limiting his decision-making authority regarding the withholding or withdrawal of life-sustaining treatment. In contrast, had Mr. Wilson not been appointed guardian for his wife, as her husband and the second surrogate decision maker under the FHCDA, he would have had unquestioned authority to execute the MOLST form on her behalf. Although Mr. Wilson sought the Guardianship to have the authority to assist his incapacitated wife in matters that exceeded her medical needs, the Guardianship Order actually limited his powers in regard to medical decisions. As a result, Mrs. Wilson was intubated and subject to care that her family believes she would have rejected based on her condition, even though all of Mrs. Wilson’s family members were in agreement with Mr. Wilson that their wife/mother/sister would not want life-sustaining measures to be undertaken.
This situation is exactly what the legislature set out to prevent with the enactment of the FHCDA. The Legislature recognized that these personal decisions are best left to the families of incapacitated individuals. According to the Legislature, the trial court “must protect itself from inappropriate involvement in a life-sustaining medical treatment case and should decline jurisdiction if there is no justifiable controversy.”
Even though Article 81 of the Mental Hygiene Law specifies that personal needs decisions are subject to the standards of the FHCDA, Mrs. Wilson’s case makes evident the conflict of laws. The Legislature intended that the provisions of the FHCDA provide “responsible policies” for medical decisions for incompetent individuals as well as a process to review cases and resolve disputes within health care facilities, thereby eliminating the reliance on the courts except in situations of last resort. The Department of Health issued regulations which would further ensure that the standards of the FHCDA are followed in health care facilities such as nursing homes. Furthermore, the MOLST form was updated in June 2010 to align with the standards of the FHCDA and, therefore, the standards for a health care surrogate to complete a MOLST form are the same standards set forth in the FHCDA. As such, based on the provision of the FHCDA that subjects personal needs decisions made by Guardians to the FHCDA, it is clear that the FHCDA has provided the necessary safeguards and procedures to ensure that decisions regarding life sustaining treatment are properly made at health care facilities without the intervention of the courts.
Courts Need Further Legislative Guidance
Although the statute purports to make the requirements clear, the misapplication of the clear and convincing standard with the substituted judgment/best interests standard of the FHCDA by some courts across the state evidences the fact that New York Courts need further guidance on this issue. It is necessary that the Legislature make clear the correct standard to be applied in the circumstances where an Article 81 Guardian makes a decision regarding life-sustaining treatment. As family members or close friends are commonly appointed as guardian to an incapacitated individual, it is suggested that the Legislature further specify the application of the standard in cases where an independent guardian has been appointed versus those cases where a family member/close friend has been appointed. In the latter cases, the guardian is more likely to be knowledgeable about the patient’s beliefs and wishes, knowledge of which an independent guardian would not be privy. As the Legislature has stated consistently, “decisions about life-sustaining treatment are best made in the context of the family or other personal relationships” and as such, the appointment of a family member or close friend as a guardian under Article 81 must not include barriers that would not exist in the event a Guardian had not been appointed.
Finally, it is suggested that the Legislature specify the proper standards to be applied when an Article 81 guardian is asked to complete a MOLST form. Advanced directives ensure that a patient “receives the care and treatment he or she desires.” However, because the form is an “advanced” directive, at the time the MOLST form is completed, the patient has not yet reached the point that they meet the medical standards set forth in the FHCDA. This has caused confusion as to a Guardian’s ability to complete the MOLST form. In my experience, the court is looking for the standards of the FHCDA to be met, specifically that the patient is permanently unconscious or death imminent within six months. However, the MOLST form is not completed at this stage of treatment. Instead, it is completed prior to this stage, to prevent unwanted treatment from being administered in the event that the patient becomes permanently unconscious or death becomes imminent. As an advanced directive, the purpose of the MOLST form is defeated if a guardian is required to wait until a patient’s condition deteriorates, suggesting that further guidance is needed by the Legislature on this matter.
As evidenced by the enactment of statutes such as the Family Health Care Decisions Act and the Guardianship Statutes, New York has taken extensive measures to ensure that individuals’ wishes are appropriately carried out when they are no longer able to make decisions on their own behalf. To ensure that incapacitated individuals are extended the protections that the Legislature recognized were necessary and worked to enact, it is essential that the Courts be provided further guidance to ensure these standards are uniformly applied across the state.
[i] Family Health Care Decisions Act, A. 6791, 1995-1996 Leg., Reg. Sess. (N.Y. 1995) (citing Memorandum in Support of Legislation).
[ii] In re Zornow, 31 Misc.3d 450, 455, 919 N.Y.S.2d 273, 277 (2010) (emphasis added).
[iii] In re Doe, 53 Misc.3d 829, 852, 37 N.Y.S.3d 401, 417 (2016).
[iv] Family Health Care Decisions Act, N.Y. Pub. Health § 2994-d.
[v] N.Y. Pub. Health § 2994-d(a).
[vi] Family Health Care Decisions Act, A. 7729-D, 2009-2010 Leg., Reg. Sess. (N.Y. 2009); N.Y. Mental Hyg. §§ 81.22, 81.29.
[vii] The parties’ names have been changed to protect their privacy.