End-of-Life Decisions for Incapacitated Adults: Caught Between a Conflict of Laws

Jennifer Cona

The common law principle is well-settled that every individual of sound mind and adult years has a right to determine what should be done with his or her own body. The right to accept or reject medical treatment has long been recognized for competent adults. 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 and 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.

Signed into law in 2010, the Family Health Care Decisions Act (FHCDA) (N.Y. PUB. HEALTH LAW §2994-d) reflected a major departure regarding the standard under which life sustaining treatment may be terminated for a mentally incompetent person. The FHCDA flipped the switch from the prior "presumption of life" to a "presumption of termination" (absent indication from the principal to the contrary), and did so especially in the context of artificial nutrition and hydration. See In re Zornow, 919 N.Y.S.2d 273, 31 Misc.3d 450 (Sup. Ct. Monroe Cty. 2010).

Intending to fill a gap in New York law by establishing a decision-making process applicable for patients lacking decision-making capacity in hospitals and nursing homes who do not have advance directives, the FHCDA allows surrogate decisions regarding the withdrawal or withholding of life-sustaining treatment based on a best interests standard, subject to the medical standards set forth in the statute. See N.Y. PUB. HEALTH Law §2994-d(4); see also In re Doe, 37 N.Y.S.3d 401, 53 Misc.3d 829 (Sup. Ct. Kings Cty. 2016). Guardians pursuant to Article 81 of New York's Mental Hygiene Law are given the highest priority to act as a surrogate decision maker, followed by a priority order of family members and other persons close to the patient.

In enacting the guardianship statutes codified in Article 81 of the Mental Hygiene Law 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 set forth in the FHCDA, which has become problematic in various circumstances.

Two Standards

The authority of a guardian of the Person under Article 81 of the Mental Hygiene Law extends well beyond the authority to make medical decisions as granted by the FHCDA. As such, the appointment of a guardian is often warranted to ensure the complete protection of an incapacitated individual's interests. The courts generally favor the appointment of a family member as guardian, particularly with regard to personal needs. See, e.g., In re Naquan S., 767 N.Y.S.2d. 906 (N.Y. App. Div. 2003). As guardian, a family member is in the first position of possible surrogate appointees under 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.

In practice, the FHCDA has been interpreted differently across the counties throughout the state regarding end-of-life decisions. As the FHCDA states that a guardian is authorized to make decisions regarding health care pursuant to Article 81 of the Mental Hygiene Law, some court jurisdictions 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 "best interests" and medical standards set forth in the FHCDA. See N.Y. PUB. HEALTH LAW §2994-d(1)(a).

With the passage of the FHCDA, §81.29 of the Mental Hygiene Law was repealed and the "personal needs" provisions in §81.22 was amended. See FHCDA, A. 7729-D, 2009-2010 Leg., Reg. Sess. (N.Y. 2009); N.Y. MENTAL HYG. LAW §§81.22, 81.29. Pursuant to amended section 81.22, 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 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.

Case Study

Consider this fact pattern: Mrs. Crake's husband was named the guardian of her personal needs and property management. However, the court limited Mr. Crake's powers regarding the withholding of life-sustaining treatment, requiring further Court order in such event. Mrs. Crake was a woman in her sixties diagnosed with early onset Alzheimer's disease who exhibited end-stage dementia. Mrs. Crake required increased levels of residential care as her condition was quickly deteriorating and she required frequent hospitalizations. Mr. Crake, as Mrs. Crake'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. Crake did not have authority to execute a MOLST 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. Crake 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. Crake 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. Crake was intubated and subject to care that her family believes she would have rejected based on her condition, even though all of Mrs. Crake's family members were in agreement with Mr. Crake 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." See FHCDA, A. 7729-D, 2009-2010 Leg., Reg. Sess. (N.Y. 2009) (citing Memorandum in Support of Legislation).

Even though Article 81 of the Mental Hygiene Law specifies that personal needs decisions are subject to the standards of the FHCDA, Mrs. Crake'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 that 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.

Although the statute purports to make the requirements clear, the misapplication of the clear and convincing standard with the best interests and medical standards 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 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, it is essential that the courts be provided further guidance to ensure these standards are uniformly applied across the state.

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End-of-Life Decisions for Incapacitated Adults: Caught Between a Conflict of Laws