End-of-Life Decisions for Isolated Patients Under New York's Family Health Care Decisions Act

Photo ID 6232629 © Mykola Velychko | Dreamstime.com ABSTRACT The most challenging end-of-life cases involve patients who lack capacity and have no surrogate decision-makers. New York's Family Health Care Decisions Act provides alternative criteria for withdrawing or withholding treatment in such cases, including the requirement that the patient "will die imminently, even if the treatment is provided." This article clarifies the interpretation of "imminent" and offers recommendations to improve end-of-life policies, including greater reliance on Ethics Review Committees (ERCs). INTRODUCTION Probably the most distressing end-of-life cases involve patients who lack capacity and who are socially isolated – that is, who do not have a health care agent, family member, or friend who knows them, cares about them, and will make decisions for them.[1] Health care professionals caring for these socially isolated patients struggle with exceedingly difficult professional, ethical, and legal issues.[2] Several states have enacted laws with standards and procedures for such decisions.[3] In New York, the Family Health Care Decisions Act (FHCDA) governs end-of-life decisions for most socially isolated patients.[4] This article examines the provisions for socially isolated patients in the FHCDA. While the FHCDA is just one state’s statute, the clinical, ethical, policy, and even interpretive issues addressed here will be instructive to health care professionals and policymakers in other states as well. Special attention is given to the FHCDA provision that requires, as a basis for withdrawing or withholding treatment from socially isolated patients, a finding that the patient “will die imminently, even if the treatment is provided.”[5] That critical phrase is a source of uncertainty, both with respect to time period that qualifies as “imminently” and to the application of the phrase to DNR orders.[6] A clear, uniform understanding of the “will die imminently clause” will reduce both undertreatment and overtreatment of socially isolated patients at the end of life. But an additional policy change is needed. This article recommends that, once standards for ethics review committees are strengthened, the FHCDA should be amended to allow the attending physician to decide to withhold or withdraw life-sustaining treatment for a socially isolated patient based on the standards that now apply to surrogate decisions, subject to approval by an ethics review committee. The FHCDA already allows decisions on this basis for socially isolated patients in hospice;[7] the approach should be broadened. I. The Family Health Care Decisions Act The FHCDA governs decisions for patients in hospitals, nursing homes, and hospices who lack capacity and who did not, prior to losing capacity, make the decision personally or appoint a health care agent.[8] The statute governs consent to treatment and decisions to withdraw or withhold life-sustaining treatment. In general, the FHCDA provides for the designation of a surrogate decisionmaker from a priority list. The highest priority category on that list is a court-appointed guardian when there is one. After that, the list proceeds through levels of close relatives and ends with the category “close friend.”[9] a. A Surrogate Decision to Withdraw or Withhold Life-Sustaining Treatment Under the FHCDA, a surrogate may decide to withhold or withdraw life-sustaining treatment from the adult patient who lacks decision-making capacity based on the patient’s wishes, if known or ascertainable through reasonable efforts or when the patient’s wishes are unknown and not reasonably ascertainable, on best interests. Whether the patient’s wishes or the best interest standard is applied, certain clinical ethical standards must be met. For example, either: (i) treatment would be an extraordinary burden to the patient and the patient has an illness or injury which can be expected to cause death within six months, whether or not treatment is provided; or the patient is permanently unconscious; or (ii) the provision of treatment would involve such pain, suffering, or other burden that it would reasonably be deemed inhumane or extraordinarily burdensome under the circumstances, and the patient has an irreversible or incurable condition.[10] This standard, referred to in this article as the “surrogate decision-making standard,” does not require a finding that the patient is imminently dying. b. FHCDA Provisions Regarding Socially Isolated Patients FHCDA section 2994-g governs decisions for most incapable adult patients without surrogates. Subsections 5 and 5-a establish the three alternative bases for ordering the withdrawal or withholding of life-sustaining treatment for socially isolated adult patients. As explained further below, life-sustaining treatment can be withdrawn or withheld from a socially isolated patient based on: (1) judicial approval; (2) the “will die imminently” test; or (3) decisions regarding hospice care. c. Judicial Approval First, the FHCDA allows treatment to be withdrawn or withheld from a socially isolated patient if a court finds that the decision meets the surrogate decision-making standard (terminally ill, permanently unconscious, or extraordinary burden).[11] Prior to the FHCDA, a court had no such authority; it could approve the decision only if it found “clear and convincing evidence” of the patient’s “firm and settled commitment” to forgo treatment under the circumstances.[12] d. The “Will Die Imminently” Test Second, treatment can be withdrawn or withheld from the socially isolated patient where: The attending practitioner, with independent concurrence of a second practitioner, determines to a reasonable degree of medical certainty that: (i) life-sustaining treatment offers the patient no medical benefit because the patient will die imminently, even if the treatment is provided; and (ii) the provision of life-sustaining treatment would violate accepted medical standards.[13] As noted previously, there is uncertainty among clinicians and others regarding the meaning of “will die imminently”[14] — what does it mean and how long a time period is “imminently”? Or to use a legal lens: how would the phrase “will die imminently” be construed in an administrative or judicial legal proceeding? As explained below, the phrase “imminently” clearly includes a period of hours or a few days, probably includes a week and perhaps two weeks, but probably does not include a month or more. i. Administrative And Judicial Definition There is no NYS Department of Health regulation or guidance that further defines the phrase “will die imminently.”[15] Such state agency regulation or guidance would have been entitled to considerable deference if a court found that the interpretation required specialized knowledge or expertise.[16] Moreover, no published judicial opinion interprets the meaning of “will die imminently” in the FHCDA, so there is no binding precedent. The words “imminent” and “imminently” appear in several other New York state statutes. For example, under New York Mental Hygiene Law, confidential mental health information can be disclosed to an endangered individual based on the practitioner’s determination that the patient presents “a serious and imminent danger” to the endangered individual.[17] The Family Court Act defines “neglected child” to mean a child “in imminent danger of becoming impaired....”[18] Several courts have interpreted those words for the purpose of those other statutes. In a child neglect case, the NYS Court of Appeals explained that “’ imminent danger’” must be “near or impending, not merely possible.”[19] However, the interpretation of “imminent” for the purpose of statutes other than the FHCDA is not dispositive of its meaning in the FHCDA. The phrase "imminent death" is also used in Georgia and Vermont laws as a basis for a DNR order.[20] But the phrase is not defined in those statutes either. ii. Principles Of Statutory Construction In the absence of administrative guidance or judicial precedent, a court would define “will die imminently” by using familiar principles of statutory construction.[21] Initially it would look to the plain, customary meaning of the words as well as the statutory context. If the court needed further guidance, it would consider the legislative history and then possibly professional or scholarly interpretations. A court would be mindful of policy implications, but it could not twist the plain meaning of the words to achieve policy ends. iii. Plain Meaning Courts typically start with dictionary definitions “as guideposts to determine a word’s ordinary and commonly understood meaning.”[22] Webster’s International Dictionary, Third Edition (1993) defines “imminent” to mean “Ready to take place; near at hand; impending; hanging threateningly over one’s head; menacingly near.”[23] The Oxford English Dictionary defines “imminent” to mean “Of an event (almost always of evil or danger): Impending threateningly, hanging over one's head ready to befall or overtake one close at hand in its incidence coming on shortly.”[24] Merriam-Webster, a commonly used online reference, defines “imminent” as “ready to take place: happening soon.”[25] Not surprisingly, none of these definitions specify a time period; the term is intentionally imprecise. It is a qualitative, not quantitative, concept. But it unmistakably means “soon.” iv. Statutory Context Courts will also construe a statute as a whole and consider sections together with reference to each other.[26] In this instance, the statutory context is revealing: one of the other bases in the FHCDA for a surrogate decision to forgo life-sustaining treatment is that “the patient has an illness or injury which can be expected to cause death w