Barriers to Universal Advance Directives

Health care advance directive laws vary quite a bit from state to state.  That’s not new news to anyone, but why is it so?

The idea of using a legal document to communicate one’s wishes about future health care decisions is an idea that took root in the 1970s, first in California, and quickly spread to all states in the form of legislation creating living wills and health care powers of attorney-- documents we now generically call health care advance directives.  One of the negative consequences of this evolution is a hodgepodge of differing legal requirements for the forms themselves and their language, execution requirements, permissible options, and prerequisites for effectiveness.  Not surprisingly, the National Academy of Medicine in its seminal 2015 report, Dying in America, found that. “The many and varied requirements embedded in state laws covering advance directives also discourage their completion.”¹   The Uniform Law Commission attempted to break through the Balkanized terrain of laws by creating a remarkably simple, consumer-friendly Uniform Health Care Decisions Act twenty-five years ago in 1993, but states have largely ignored it.  Nevertheless, there have been small steps taken by states toward simplifying their laws.

In a recent issue of the Journal of Law, Medicine and Ethics,[1] Charles Sabatino reviewed state advance directive legislation with the goal of measuring of how far we have come in creating user-friendly state advance directive laws.  This was done by identifying the range of prerequisites and formalities imposed by state laws for a valid advance directive.  The more state advance directive laws impose detailed, form, language, and detailed execution requirements, the more intimidating and confusing advance directives become for the average adult and the more difficult it becomes to publish advance directive tools and forms that adults in all states can choose to use without worrying about their validity in other states.  No one documentation approach to advance care planning suits everyone, so having a wide variety of tools and documentation options unencumbered by overly legalistic requirements could greatly expand the public’s willingness to engage in advance care planning and document their wishes in an advance directive.

The review focused primarily on health care powers of attorney (HCPA), documents in which an individual (referred to as the principal) appoints a health care agent or agents (also called proxy, surrogate, representative), authorized to make health care decisions for the individual in the event of incapacity.  HCPAs also allow the principal to include instructions or guidance for decision-making.  

The author reviewed the HCPA laws in the 50 states and the District of Columbia in effect as of January 1, 2018.  A key criteria for measuring the user-friendliness was the extent to which a single advance directive could meet the requirements for validity in every jurisdiction.  The FiveWishes® advance directive was used as the test device for this exercise because it has been in national distribution since 1998 as a universal advance directive and is widely known.

The review discovered six state law requirements in health care power of attorney statutes that pose barriers of varying difficulty to universal validity under state laws.  Three of these elements or barriers were considered surmountable with some effort in drafting: (1) proxy/agent qualifications; (2) witnessing requirements and qualifications, and (3) the timing of commencement of the agent’s authority.  Five Wishes surmounts the first two by including the cumulative list of all state requirements or disqualifying conditions for proxy/agents and witnesses.  The trade-off of course is greater complexity in instructions.  For example, the review found at least 11 different categories of witness disqualifications used across the states, so including the cumulative list and instructions on the form is feasible but more cumbersome than should be necessary.

One venue in which the cumulative list of witness disqualifications does not universally work is an institutional setting such as a hospital or nursing home.  Seven states have idiosyncratic, additional requirements for executing a HCPA in differently defined institutional situations.  Meeting all the requirements in a common document goes beyond workability.

The third barrier, regarding the commencement of the agent’s authority, was addressed by making to agent’s authority commence upon the decisional incapacity of the principal, because that is either required or an option in all states—despite the fact that about half the states permit an immediately effective HCPA if so stated in the document.

The other three barriers were considered insurmountable and directly undercut the possibility of a universally valid advance directive: (4) mandatory forms requiring substantial compliance (six states); (5) unique mandatory notices that must accompany any form (4 states); and (6) mandatory language to enable certain authority (2 states), such as Indiana’s requirement that special language verbatim language - 169 words in length – be included if the document grants authority to withhold or withdraw any health care.

The following Table breaks down the states that pose these three serious barriers that are fatal to the possibility of flexible, consumer friendly “universal” forms such as Five Wishes The states that require substantial compliance with their statutory form could eliminate the restrictive impact of that mandate without legislative change if a court or an attorney general’s opinion were to render a practical interpretation of substantial compliance to mean compliance with the signature, dating, and witness requirements under their statute. But to date, there has been no interpretive guidance.

Oregon has partially solved the problem in its law by providing a savings, stating that a non-compliant advance directive “shall constitute evidence of the patient’s desires and interests.” This eliminates the legal barrier to using other forms, but it still leaves uncertainty about how compliant health care providers will be with a non-statutory form in practice.

The mandatory notice and prescribed language barrier states will need legislative change to eliminate those barriers.  The good news is that a carefully drafted multi-state HCPA complaint with the law in 41 States and the District of Columbia is currently possible.   But, the mantra for progress should be “simplify, simplify, simplify.”  In health care decision-making, a goal of creating precise legal forms misses the mark.  The goal is to create tools that make it easy for individuals to communicate their wishes in whatever way is most comfortable, genuine, and effective for that unique individual. To do that, let a thousand flowers bloom.

The journal article on which the above summary is based can be found at https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-jlme-universal-ad-barriers.pdf The opinions expressed therein represent the views of the author and not the American Bar Association.[1] Charles P. Sabatino, “Overcoming the Balkanization of State Advance Directive Laws,” 46(4) J. Law, Medicine and Ethics, 978 ( 2018).

The Checklist

The Checklist is divided into three stages: pre-meeting, first client meeting, and second client meeting.  The Checklist is a counseling tool and not a checklist for drafting the client’s advance directive.  The latter task is too state-specific to prescribe in a nationally usable checklist.

The heart of the Checklist focuses on health care agent selection and client values, priorities, and wishes, borrowing from an online advance care planning tool developed by Rebecca Sudore, MD, and colleagues at the University of California San Francisco.  Research on the tool, called Prepare for Your Care, has shown that it increases patient-reported engagement and documentation of advance care planning. However, a key emphasis of the Checklist is to encourage clients to do more on their own, because an extended meeting with legal counsel is not something most clients will pay for.  The Guide recommends that lawyers offer clients one or more advance care planning tools to use on their own and in discussion with family and health care providers.  The resource list included with the Checklist references a variety of effective tools, because no one tool will likely appeal to every client.   

Also, part of the Checklist is a sample letter from the lawyer to the client’s physician to serve as a model for connecting the planning process to the client’s health care provider and getting the advance directive into the medical record.  Many barriers prevent advance directives from being present in the medical record when needed, so this initial conveyance of the directive, which requires client consent, does not solve all problems.  But it takes an important first step.  In addition, providing multiple copies of the advance directive or an electronic copy to the client enables the client to share it significant others.

A final key element of the Checklist is the emphasis on the continuing nature of advance care planning.  Too often, when an advance directive is signed, the client assumes that the task is done.  In reality, the planning process continues throughout life as health or living circumstances change, and as the individual experiences serious illness and deaths among one’s friends and loved ones.  Therefore, the Checklist uses a simple mnemonic to communicate this point.  Clients should be encouraged to revisit their advance care plans and documents whenever any of the “six Ds” occur:

(1)   You reach a new DECADE in age.

(2)   You experience a DEATH of a loved one.

(3)   You experience a DIVORCE.

(4)   You receive a DIAGNOSIS of a significant health condition.

(5)   You experience a significant DECLINE in your functional condition.

(6)   You change your DOMICILE or someone moves in with you.

It is hoped that lawyers will test drive the guide, adapt it to their practices, and even improve it as they learn what works best for them.  It is downloadable at: https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/ad-counseling-guideThe web page also includes a Word version of the Checklist so that lawyers can incorporate the text into their own office systems and adapt it as desired.  A published print version of the Guide can be purchased for $19.95 in the ABA Store (https://www.americanbar.org/products/inv/brochure/346598312/). 

[1] This article was published in the Senior Lawyers Division November 2018 issue of Voice of Experience under the title “A New Advance Care Planning Counseling Tool for Lawyers.”

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