Can True Parity Really Be Achieved? A Proposal for Behavioral Health Advance Directive Statutes with Bite

By David C. Jung

 

I. Introduction

Consider the following scenarios:

You are thirty-six years old and frightened. You were diagnosed with schizoaffective disorder five years ago and have been admitted to public psychiatric hospitals several times since. During your most recent hospitalization, your treating psychiatrist barely spoke English. No matter how hard you tried to explain that taking certain antipsychotic medications would exacerbate your tardive dyskinesia,[1] the psychiatrist either could not understand or dismissed you as someone who was incapable of making informed decisions; he prescribed Aloperidin—one of the antipsychotics you did not want to take. You know you need treatment but are so afraid of the possibility of being subjected to terrifying and dehumanizing experiences again. What can you do?[2]

Now imagine yourself a parent of John, your twenty-five year old son, who suffers from schizophrenia. You know John just stopped taking his medication. You also know that this time will be no different from the previous times John decided to stop—he will gradually deteriorate until he becomes so ill that he finally meets the standards for civil commitment. The ever-looming possibility of John committing suicide or being hurt by others makes you sick to your stomach, but so does going to court to get him committed.  When well, John has often said he understands that he needs treatment and thanks you for intervening when he becomes incapable of helping himself. Yet when he goes off his meds, he pushes you away and refuses treatment. Why do you and John have to constantly endure these destructive and taxing cycles?[3]

These questions are most germane to all who struggle with psychiatric disorders—the afflicted and their families or caretakers. Self-determination and autonomy are doctrines that have long been recognized by society and accepted by the medical community,[4] but only recently has society begun extending the application of those doctrines to people with mental disabilities.[5] All fifty states have enacted legislation permitting medical advance directives (MAD).[6] However, most of this legislation does not apply directly to future decisions regarding an individual’s mental health care.

Arkansas, like many other states, does not give equal effect to behavioral health advance directives (BHAD) as it does to general MADs. Merely enacting a statute similar to one of the twenty-six state laws specifically addressing BHADs would be insufficient. Most of those lack the force given to the traditional counterpart—pragmatically speaking, people with mental health issues are still at the mercy of medical health providers. Consequently, Arkansas and other jurisdictions should statutorily enact meaningful BHAD statutes.

After a brief, general overview of advance directives, this proposal will discuss the current status of BHAD in various states. Next, recommendations regarding implementation of new legislation will be made, followed by both immediate and extended impacts thereof—including effects on health care costs, quality, and access. Finally, a conclusion will be drawn by discussing predictions on whether BHADs will actually achieve equal footing with MADs.

II. Background

A.     History of Advance Directives

Luis Kutner is often credited with introducing the idea of a living will in the United States.[7] In the years after his 1969 article was published, many states began enacting legislation formally recognizing living wills and other similar forms of advance directives.[8] Although Kutner’s theories were rooted in estate law, today’s prevailing notions behind advance directives emanate from the widely accepted right to refuse medical treatment.[9] This concept is best illustrated by the United States Supreme Court’s opinion in Cruzan v. Director, Missouri Health Department,[10] where the Court recognized that an incapacitated person’s wishes to refuse treatment could be given effect so long as clear and convincing evidence of those wishes existed. Following Cruzan, Congress enacted the federal Patient Self-Determination Act of 1990 (PSDA)[11] to promote the use of written advance directives—seemingly to ensure that the clear and convincing hurdle would always be met.[12] The PSDA firmly supplanted the legitimacy of MADs in all United States jurisdictions.

B.     Advent of Behavioral Health Advance Directives

Unlike MADs, BHADs did not begin emerging until the late 1990s. Though limited to a portion of the Americans with Disabilities Act, in Olmstead v. L.C., the United States Supreme Court held that individuals with disabilities could not be discriminated against, and needless isolation of such individuals is a form of discrimination.[13] Olmstead questioned standard practices of the American mental healthcare industry, thereby lending support to the legal recognition of BHADs. Later cases better evidence the expansion of rights with respect to the ability of healthcare providers to override BHADs. In Hargrave v. Vermont, the Second Circuit affirmed a lower court’s decision invalidating a Vermont law that “established a procedure for overriding [advance directives] of certain patients who are committed or imprisoned.”[14] Specifically, the state statute violated Title II of the ADA.[15] The key takeaway from Hargrave is courts today will probably find that Title II of the ADA prevents states from allowing providers to override BHADs in non-emergent situations if similar laws prevent them from overriding MADs.[16] After Olmstead and, more importantly, Hargrave, many states enacted legislation that sought to remedy the disparity in the effects given to MADs and BHADs.

C.     Types of Advance Directives

As alluded to previously, a BHAD is really just a more specific form of an advance directive—legal devices that give individuals the ability to self-direct aspects of their own health care in the event of future cognitive impairment. Generally, advance directives come in one of two forms: (1) a living will or something else that provides explicit instructions for treatment; and (2) a healthcare proxy—designated individual entrusted with making health care decisions on the patient’s behalf.[17] A BHAD may, in fact, use the same living will or healthcare proxy systems or an entirely new system with characteristics that distinguish it from the others. Two common forms of BHADs include Ulysses contracts[18] and voluntary commitment contracts.[19]

Ulysses contracts advance patient autonomy, albeit in an unusual manner. Using self-limiting principles, Ulysses contracts allow individuals with recurring mental illnesses to determine future healthcare decisions but do not permit them to withdraw or otherwise modify those decisions later, sometimes even after reaching capacity.[20]

Rather than focusing on whether a patient meets the requirements to be civilly committed, voluntary commitment contracts allow patients to develop a plan via BHADs that will be given effect prior to involuntary commitment.[21] Some argue that “this concept short-circuits self-determination by removing decision-making power before incompetence occurs.”[22] However, if a voluntary commitment contract is truly voluntary, it still supports patient autonomy in that it allows patients to exercise their rights to treatment on their own terms.[23]

III. Current Status

A.     State Laws Specifically Recognizing BHADs

As of today, twenty six states and the District of Columbia have enacted statutes specifically authorizing the use of BHADs.[24] All of these jurisdictions can be loosely “divided into five categories based on the level of competency required for a patient to execute a PAD.”[25] One end of the spectrum is represented by three states that create a presumption of competency.[26] The other end is supported by the laws of Louisiana and Indiana, which require a mental status exam or a psychiatrist’s attestation.[27] In between are three additional categories: one that requires witness attestation as to the individual being of sound mind,[28] a second that requires a witness attestation of competence,[29] and the last category requires that the individual is competent or not incapacitated.[30]

Though the laws of all twenty-seven jurisdictions may differ to some degree, generally, they allow mentally disabled citizens to consent to or refuse treatment such as electroconvulsive therapy, administration of specific medication, and admission to specific hospitals.[31] Another area in which they are similar is instances in which a BHAD would not be followed: when it conflicts with generally accepted community practice standards, when the treatments are not feasible or available, when it conflicts with emergency treatment, and when it conflicts with applicable state laws.[32]

B.     Arkansas Law

Currently, Arkansas does not have a statute specifically enacted for the purposes of addressing BHADs. However, Arkansas, like every other state, has enacted statutes providing for a Durable Power of Attorney for Health Care.[33] Nothing in this statute precludes it from being used for BHAD purposes.[34] To create a Durable Power of Attorney for Health Care, a person must appoint a healthcare proxy in a written document that must be signed by the principal, agent, and two witnesses.[35] The statute is also silent on duration of validity—suggesting that a valid Durable Power of Attorney for Health Care would remain until legislatively superseded or revoked by the principal.[36]

The use of the health care power of attorney as a BHAD has potential to be seriously flawed. First, people are not permitted to create a freestanding list of procedures they wish to consent to or refuse—which would be the best way to safeguard the principals’ wishes. Second, although agents of the principals are able to make those decisions, an absence of additional requirements evidencing the principals’ wishes increases the risk of neglecting those wishes through physician coercion or agent apathy. Finally, limiting Arkansas’s offering of BHADs to just Durable Powers of Attorney for Health Care potentially limits application of the BHAD until a principal has become civilly committed. Even though some practitioners are critical of voluntary commitment statutes, many consider them a proactive means of managing a mental disability.

IV. Recommendations

The Arkansas General Assembly should enact new legislation allowing its citizens to create BHADs in which they specifically consent to or refuse certain medication, treatment, or hospital admission. Additionally, the legislation should allow people to create a more generalized disability management plan—whereby they could elect to receive treatment prior to civil commitment status. The formalistic requirements should not vary distinctly from those of the Durable Power of Attorney for Health Care, save requiring the two witnesses to also attest to the person’s competence.

Apart from enacting BHAD legislation, the Arkansas General Assembly should also amend existing legislation to maximize individual autonomy in instances of involuntary civil commitment. Current legislation leaves the balance of power firmly in the grasp of the judiciary and the physicians.[37] Clearly establishing the parameters of psychiatrists’ ability to exercise their power to override BHADs would also reduce the instances of questionable treatment decisions. Determining whether the situation represents an emergency should be a minimum threshold requirement before a psychiatrist is allowed to override a BHAD. “Emergency” should be limited to mean situations where individuals represent a danger to others or themselves. Even if a patient is committed due to this type of emergent situation, once the immediate danger is removed, BHADs should be given full consideration and deference, continued commitment notwithstanding.

V. Impacts

 The immediate impact of enacting the proposed recommendation primarily addresses mental health parity. Parity is the single biggest issue facing mental health treatment. Historically, mental health has a unique beast that the standard medical model does not—the state can almost always commit people if they pose a danger to themselves or others. Possibly this and other reasons have cast a dark cloud over those afflicted, resulting in a widespread social stigma that cannot be overcome without legislative intervention. Congress is trying to do just that with the Paul Wellstone and Pete Domenici Mental Parity and Addition Act, which went into effect in July of 2010. The act helps improve parity by requiring certain insurers to provide equitable coverage for mental health treatment. Parts of the Affordable Care Act attempt to achieve parity as well. One portion requires mental health coverage be included within plans sold through state exchanges while another part raises the standards of Medicaid mental health coverage “benchmark” plans—which were originally set up as comparators of inadequate private insurance plans.

The proposed recommendations do not relate to parity in insurance coverage, but they do share a common theme—giving the mentally disabled the rights they are due. By embracing patient autonomy and self-determination as fundamental rights, enacting the proposed BHAD recommendations will attempt to achieve parity on the foundational level.

Though they cannot be predicted with absolute certainty, enacting BHAD laws could have some significant long-term effects on the iron triangle (cost, access, and quality) of our healthcare system. While impossible to guarantee that the cost of treatment will be reduced by a BHAD, the BHAD may specify medications that do not work for a patient—thus alleviating the “trial and error” process often seen in psychiatric treatment. Medications and treatments have considerable costs associated with them; a BHAD can help facilitate an informed approach to treatment, helping to reduce the cost burden on the system. Through a BHAD, a patient could specify a facility for treatment, including one closer to home. Treating a patient closer to home so that family members have the opportunity to be involved can be a cost effective measure as well—possibly reducing length of stay.

Knowing what a person prefers ahead of time can help with access in terms of admission and discharge. Mental health hospitalization is only one small piece of the treatment process. After discharge, patients often need to address issues like access to services, housing, medications, and continued treatment. BHADs give people an opportunity to review these options ahead of time and uncover care providers that were previously unconsidered. This touches on quality as well. Quality is not limited to health care services in general; it also encompasses the preferences of the consumer. Being able to choose where one wants to be treated and what treatments one wants to submit to embodies the idea of attaining quality care.

VI. Conclusion

Over half of the states have already enacted some type of BHAD legislation. However, I believe Arkansas’s immediate future for the mentally disabled does not look as bright. It would seem possible that some day, mentally disabled Arkansans and their families could receive rights equal to those electing to use MADs. But for now, the financial climate seems to guide legislative appropriation;[38] programs traditionally thought of as non-essential, especially those that may extend rights to a disenfranchised class, are bound to be moved to the back burner.


[1] Tardive dyskinesia is a neurological syndrome characterized by repetitive, involuntary movements with features such as grimacing, lip smacking, rapid movements of appendages, and tongue protrusion, among others. Treatment is highly individualized and symptoms can persist indefinitely. Tardive Dyskinesia, Nat’l Inst. of Neurological Disorders and Stroke, http://www.ninds.nih.gov/disorders/tardive/tardive.htm (last updated Oct. 4, 2011).

[2] See Ronald S. Honberg, Mental Health and the Law: Advance Directives, 11 J. NAMI Cal. 3 (2000), available at http://www.nami.org/Content/ContentGroups/Legal/Advance_Directives.htm.

[3]  Id.

[4] The landmark United States Supreme Court decision of Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990), marked the judiciary’s recognition of a constitutional right to die. The right to refuse medical treatment, even life-saving treatment, prior to the necessity of such treatment is the primary basis for extending that right to those suffering from psychiatric illness.

[5] See Paul S. Appelbaum, Advance Directives for Psychiatric Treatment, 42 Hosp. & Community Psychiatry 983, 983 (1991) (suggesting that mental health advance directives were “on the verge of having a major impact on psychiatric care”).

[6] Norman L. Cantor, The Real Ethic of Death and Dying, 94 Mich. L. Rev. 1719, 1729 (1996).

[7] See Luis Kutner, Due Process of Euthanasia: The Living Will, a Proposal, 44 Ind. L.J. 539, 550-54 (1969).

[8] California is considered the first state to enact such legislation. 1976.

[9] See Justine A. Dunlap, Mental Health Advance Directives: Having One’s Say? 89 Ky. L.J. 327, 331-32 (2001).

[10] Cruzan v. Dir., Missouri Dept. of Health, 497 U.S. 261 (1990).

[11] Omnibus Budget Reconciliation Act of 1990, Pub. L. No. 101-508, §§ 4206, 4751 (codified in scattered sections of 42 U.S.C.). The act requires many Medicare and Medicaid providers to give patients information regarding advance directives, including the right to be involved in their own healthcare decisions, the right to accept or refuse medical treatment, the right to have an advance directive, and information about the providers’ policies regarding a patient’s rights. Id.

[12] See Edward J. Larson & Thomas A. Eaton, The Limits of Advance Directives: A History and Assessment of the Patient Self-Determination Act, 32 Wake Forest L. Rev. 249, 250 (1997).

[13] Olmstead v. L.C., 527 U.S. 581, 597-98 (1999).

[14] Hargrave v. Olmstead, 340 F.3d 27, 31 (2003).

[15] Id. at 39.

[16]Id. at 37.

[17] Although many sources make mention of a third option, that option just combines elements of both the living will and the health care proxy models.

[18] Dunlap, supra note ix, at 351.

[19] Rebecca S. Dresser, Ulysses and the Psychiatrists: A Legal and Policy Analysis of the Voluntary Commitment Contract, 16 Harv. C.R.-C.L. L. Rev. 777, 777-78 (1982).

[20] See generally Kurt Eggert, Lashed to the Mast and Crying for Help: How Self-Limitation of Autonomy Can Protect Elders from Predatory Lending, 36 Loy. L.A. L. Rev. 693, 736-37 (2003); see also Dunlap, supra note ix, at 351.

[21] Dresser, supra note xix, at 777-78.

[22] Dunlap, supra note ix, at 354.

[23] Id.

[24] Do All States Specifically Have PAD Statutes?, Nat’l Res. Ctr. on Psychiatric Advance Directives, http://www.nrc-pad.org/faqs/do-all-states-specifically-have-pad-statutes (last visited Aug. 26, 2013).

[25] Maurice S. Fisher, Jr., Psychiatric Advance Directives and the Right to be Presumed Competent, J. Contemp. Health L. & Pol’y 386, 397 (2009).

[26] Haw. Rev. Stat. §§ 327G-1 to 327G-14 (2004); Ky. Rev. Stat. Ann. §§ 202A.420 to 202A.991 (Lexis 2007); N.M. Stat. Ann. §§ 24-7A-1 to 24-7B-16 (2007); Wash. Rev. Code §§ 71.32.010 to 71.32.901 (2008).

[27] See Ind. Code § 16-36-1.7-2 (2004); La. Rev. Stat. Ann. § 28:222(a) (2001 & Supp. 2008).

[28] Alaska Stat. § 13.52.300 (2006); D.C. Code § 7-1231.06 (2001); 755 Ill. Comp. Stat. 43/1 to 43/75 (2006); Mich. Comp. Laws § 700.5501 to  700.5520 (2000); N.J. Stat. Ann. § 26:2H-105 (West 2007); N.C. Gen. Stat. §§ 122C-71 to 122C-77 (2001); Or. Rev. Stat. §§ 127.700 to 127.735 and 127.995 (2005); S.D. Codified Laws §§ 27A-16-1 to 27A-16-18 (2004).

[29] Idaho Code Ann. §§ 66-601 to 66-613 (2002); Me. Rev. Stat. Ann. tit. 18-A, § 5-802(i) (Supp. 2007); Me. Rev. Stat. Ann. tit. 34-B, §§ 3831, 3862 (2004); Md. Code Ann., Health-Gen. §§ 5-602.1 (West Supp. 2005); Minn. Stat. 253B.03 (2006); Tenn. Code. Ann. §§ 33-6-1001 to 33-6-1015 (2001).

[30] Ariz. Rev. Stat. Ann. §§ 36-3281 to 36-3287 (2003 & Supp. 2008); Mont. Code Ann. § 53-21-153 (2006); Ohio Rev. Code Ann §§ 1337.11, 1337.14, 2135.01 to 2135.14 (Lexis 2006); Okla. Stat. tit. 43A, §§ 11-101 to 11-113 (2001); 20  Pa. Const. Stat. § 5822 (2005); Tex. Civ. Prac. & Rem. Code Ann. §§ 137.001 to 137.011 (Vernon 2003); Utah Code Ann. §§ 62A-15-1001 to 62A-15-1004 (2006); Wyo. Stat. Ann. §§ 35-22-301 to 35-22-308 (2007).

[31] What Does a PAD Allow Me to Do?, Nat’l Res. Ctr. on Psychiatric Advance Directives, http://www.nrc-pad.org/faqs/what-does-a-pad-allow-me-to-do (last visited Aug. 26, 2013).

[32] Are There Conditions when My PAD Would not Be Followed?, Nat’l Res. Ctr. on Psychiatric Advance Directives, http://www.nrc-pad.org/faqs/are-there-conditions-when-my-pad-would-not-be-followed (last visited Aug. 26, 2013). The last conflict with state law category is misleading. Although the premise can be applied or considered as a similarity between the various states, in practice, many state laws regarding instances in which PADs may be overruled differ drastically.

[33] Ark. Code Ann. § 20-13-104 (2011).

[34] See Ark. Code Ann. § 20-13-104.

[35] Ark. Code Ann. § 20-13-104(d).

[36] See Ark. Code Ann. § 20-13-104. It is also likely that in the event the agent is a spouse, a divorce would also render the document invalid.

[37] See, e.g., Ark. Code Ann. § 20-47-218 (2011) (using a “reasonably necessary” standard as opposed to a standard based on emergent or non-emergent situations).

[38] My arguments reflected a positive impact on costs. It is likely that opponents to this proposal could formulate arguments reflecting a burden on the State. The fact of the matter is, it will be difficult to project with any certainty, and furthermore, should cost even be a concern when it comes to basic fundamental rights?

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