DIRECTIONLESS DIRECTIVES: WHY MINNESOTA SHOULD ESTABLISH AN ADVANCE DIRECTIVE REGISTRY

By: Kaitie Eke, Volume 104 Staff Member

In recent decades, advance care planning[1] (“ACP”) has gained momentum in the United States.[2] Through advance directives, a person can communicate their preferences and designate agents to make healthcare decisions on their behalf should the individual become incapacitated.[3] Those who complete advance directives may experience several benefits, including care that is less costly and better conforms to their preferences, a lower likelihood of death in the hospital, and improved communication between healthcare agents and physician staff in end-of-life care.[4]

Despite increased awareness and promotion of ACP, however, advance directives have fallen short of their promise.[5] Among the barriers to effective communication of individuals’ healthcare wishes is ineffectual record keeping and communication of the information contained in advance directives.[6] To combat this problem, a number of private organizations and state legislatures have established advance directive registries.[7]

I.  ADVANCE DIRECTIVE REGISTRIES PROVIDE SUPPORT FOR EFFECTUATION OF ACP

Individuals who complete advance directives may not consider the logistics of the documents’ ultimate use, despite the fact that such documents are of little use if their existence is unknown or they are inaccessible when needed.[8] While those who execute ACP documents are encouraged to discuss their wishes with their designated healthcare agents, such communication does not always take place.[9] Some individuals, particularly among the elderly, lack relationships within which they feel comfortable discussing their healthcare wishes.[10] Further, while individuals are encouraged to file their advance directives with healthcare providers, ACP documents may not be readily accessible within a specified practice setting or transferable to another health care setting or provider.[11]

Private[12] and legislature-established advance directive registries endeavor to strengthen the accessibility of executed ACP documents.[13] While complex laws that vary between states frustrate attempts to implement universal advance directive documents and present challenges for the establishment of a central ACP document repository,[14] several states administer legislatively authorized registries.[15] States’ provisions vary in the documents eligible for registry, procedures for filing documents, and forms of access available.[16] For example, California’s law makes information from advance directives registered with the state available “upon request to any health care provider, the public guardian, or the legal representative of the registrant.”[17] Advance directive information submitted to Arizona’s registry, in contrast, is accessible for non-healthcare providers only by entering a file number and password on the registry website.[18]

Although utilization rates of such registries are unclear, generational change may signal greater comfort with internet-based registries.[19] Regardless of the utilization rate, such registries may provide valuable peace of mind and help effectuate the healthcare wishes of individuals who have undertaken ACP.

II.  MINNESOTA SHOULD IMPLEMENT AN ADVANCE DIRECTIVE REGISTRY

Unlike states such as California and Arizona, Minnesota has no legislation implementing an advance directive registry. This does not appear to stem from a lack of concern—on the contrary, Minnesota has myriad laws regarding citizens’ understanding and communication of health care and end-of-life wishes. For example, the state has several laws concerning availability of organ donation information, including provisions for donor designations to be printed on driver’s licenses or identification cards,[20] a requirement that the Department of Public Safety provide donor information to registries established or recognized by the state,[21] and a condition that driver education curricula must include opportunities for students “to become informed about becoming [] organ donor[s].”[22]

Similarly, the concept of central repositories for significant legal documents is not unfamiliar within the state. Minnesota law provides that testators may deposit their wills directly with court administrators “for safekeeping.”[23] However, while Minnesota’s legislature has recognized both living wills[24] and health care directives,[25] in addition to providing for “Living Will/Health Care Directive” designation on interested citizens’ driver’s licenses or Minnesota identification cards,[26] there is no state-recognized analogous repository for these documents, which have important applications for decisions made regarding healthcare and quality of life before death.[27] Instead, Minnesotans who execute living wills and health care directives are instructed to keep the documents in “safe place[s]” and provide copies to family members, nominated agents, and their health care providers.[28]

While Minnesotans are free to use any of the private advance directive registries available to file their ACP documents, these registries are susceptible to many of the same problems as sharing copies of advance directives with health care agents, family members, and physicians: there is no central, top-of-mind place for loved ones and health care providers to look in a time of emergency. Indeed, the sheer variety of private registry options available reduces the likelihood that an incapacitated person’s health care agents or providers will be able to locate privately-registered ACP documents. Although many private and legislature-established registries issue emergency wallet cards in an effort to solve this issue,[29] reliance on such mechanisms may be of little comfort to individuals anticipating potential incapacity.

State-established and state-recognized advance directive registries offer a solution to this issue by providing a single centralized source to which health care agents and providers can turn in emergency situations. Such a source may, in turn, lend support to the significant public health efforts targeted at increasing awareness and completion of ACP.[30] Given Minnesota’s demonstrated efforts to educate citizens about end-of-life decisions and enable their communication of wishes, establishment of an advance directive registry by the state legislature is a logical next step.

[1] Advance care planning is “the whole process of discussion of end-of-life care, clarification of related values and goals, and embodiment of preferences through written documents and medical orders.” Inst. of Med., Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 122 (2015). In addition to the individual whose healthcare ACP concerns, the process may include the involvement of some combination of health care professionals, legal professionals, and the individual’s selected health care agent(s), family, and friends. See id.Legal documents prepared as part of ACP can be divided into two categories:  advance directives and medical orders (e.g. Physician Orders for Life-Sustaining Treatment (POLST)). See id. at 122–23. Medical orders, which pertain to seriously ill patients and constitute actual doctor’s orders, are beyond the scope of this Post. See id. at 22. Advance directives are patient-initiated documents that include living wills and durable powers of attorney for healthcare. Id.

[2] See id. at 121–24 (detailing a shift in patient behavior away from unquestioning reliance on physician recommendations and national and regional initiatives designed to promote and facilitate advance care planning). But see Robert H. Blank, End-of-Life Decision Making Across Cultures, 39 J.L. Med. & Ethics 201, 210 (2011) (noting that among twelve countries examined “the U.S. stands alone in terms of attention paid to advance directives . . . but even in the U.S. advance directives are utilized in a very small proportion of deaths, contrary to what one might believe given all the media attention.”).

[3] See Alberto B. Lopez & Frederick E. Vars, Wrongful Living, 104 Iowa L. Rev. 1921, 1923 (2019).

[4] See Kuldeep N. Yadav et al., Approximately One in Three U.S. Adults Completes Any Type of Advance Directive for End-of-Life Care, 36 Health Affairs 1244 (2017).

[5] See Inst. of Med., supra note 1, at 117.

[6] Id.

[7] See Preston Holmes, Commission on Law & Aging Research: A Tour of State Advance Directive Registries, A.B.A. (Oct. 15, 2018), https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_6_august2016/tour-of-state-advance-directive-registries.

[8] See Charles P. Sabatino, Advance Care Planning Tools that Educate, Engage, and Empower, 24 Pub. Policy & Pol’y & Aging Rep. 107, 110 (2014).

[9] See Megumi Inoue et al., Making Your Wishes Known: Who Completes an Advance Directive and Shares It With Their Health Care Team or Loved Ones?, 38 J. Applied Gerontology 1746 (2019) (finding that while 73% of respondents had advance directives, 28% had not shared those directives with anyone).

[10] See Inst. of Med., supra note 1, at 132.

[11] See Kelly Arnett, et al., Advance Care Planning: Understanding Clinical Routines and Experiences of Interprofessional Team Members in Diverse Health Care Settings, 34 Am. J. Hospice & Palliative Med. 946, 948–49 (2017) (finding that 64% of surveyed health care practices had electronic storage capabilities for ACP documents and 46% of surveyed practices could systematically transfer or make available ACP documents to another health care setting).

[12] E.g., U.S. Advance Care Plan Registry, https://www.usacpr.net; America Living Will Registry, https://www.alwr.com/index.cfm; DocuBank, https://www.docubank.com; MyDirectives, https://mydirectives.com.

[13] See Sabatino, supra note 8, at 110–11.

[14] See Charles P. Sabatino, Overcoming the Balkanization of State Advance Directive Laws, 46 J. Law, Med. & Ethics 978, 982–85 (2018).

[15] Holmes, supra note 7.

[16] See id.

[17] Cal. Prob. Code § 4800 (West 2019); see also Advance Health Care Directive Registry, Cal. Secretary St. (2020), https://www.sos.ca.gov/registries/advance-health-care-directive-registry.

[18] Ariz. Rev. Stat. Ann. § 36-3295 (2020); see also Advance Directives, St. Ariz. Secretary St., https://azsos.gov/services/advance-directives.

[19] See Sabatino, supra note 8, at 110.

[20] See Minn. Stat. § 525A.05 (2019).

[21] See Minn. Stat. § 525A.20 (2019).

[22] See Minn. Stat. § 7411.0515 (2014).

[23] Minn. R. 418 (2020).

[24] See Minn. Stat. § 145B.03 (2019) (“A competent adult may make a living will of preferences or instructions regarding​ health care. These preferences or instructions may include, but are not limited to, consent to or refusal of​ any health care, treatment, service, procedure, or placement. A living will may include preferences or​ instructions regarding health care, the designation of a proxy to make health care decisions on behalf of the​ declarant, or both.​”).

[25] See Minn. Stat. § 145C.02 (2019) (“A principal with the capacity to do so may execute a health care directive. A health care directive may​ include one or more health care instructions to direct health care providers, others assisting with health care,​ family members, and a health care agent.”).

[26] See Minn. Stat. § 171.0701 Subd. 7 (2019).

[27] See Lopez & Vars, supra note 3, at 1923–24 (noting that “advance directives protect individual autonomy under circumstances where an individual is most vulnerable to violations of dignity and autonomy”).

[28] Questions and Answers About Health Care Directives, Minn. Dep’t Health (Mar. 7, 2019, 10:06 AM), https://www.health.state.mn.us/facilities/regulation/infobulletins/advdir.html; see also Completing Your Honoring Choices Health Care Directive, Honoring Choices Minn. 5, https://honoringchoices.org/images/pdf/Guide-to-completing-your-HCM-Health-Care-Directive.pdf (providing advice regarding to whom individuals should distribute copies of their ACP documents); Probate and Planning: Health Care Directive, Minn. Att’y Gen., https://www.ag.state.mn.us/Consumer/Handbooks/Probate/CH6.asp.

[29] See, e.g., About DocuBank, DocuBank, https://www.docubank.com/index.cfm?event=about; End of Life Registry Programs, La. Sec. St. (2020), https://www.sos.la.gov/OurOffice/EndOfLifeRegistries/Pages/default.aspx (“When a living will declaration is filed, a laminated wallet ID card [is] . . . provided to the declarant, indicating that the living will declaration is on file in our office.”).

[30] See Inst. of Med., supra note 1, at 121–24.