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Summer 2019

Substitute Decision Making versus Supported Decision Making: What is the Difference?

ABOUT THE AUTHOR

Jennifer Lansing Pilcher, PhD, CMC

Dr. Pilcher was awarded her doctoral degree in Gerontology from the University of Massachusetts in Boston in 2005. Her professional experience has focused primarily on care and housing arrangements for elders with Alzheimer’s disease and related dementias, including policy and fundraising work for the Alzheimer’s Association of Eastern Massachusetts, the Alzheimer’s Association of Utah, and the Massachusetts Association of Older Americans.

Prior to founding Clear Guidance in 2018, Dr. Pilcher has had career long experience working with people with dementia and their families. For seven years, Dr. Pilcher was affiliated with Hearthstone Alzheimer Care Assisted Living programs in Massachusetts and New York, where she held a number of management positions. For 8 years, Dr. Pilcher worked both as a Care Manager and as the Director of Operations for AZA Care Management of Boston, MA.

In 2010, she joined Overlook CARE, a non-profit Care Management practice in Greater Boston, as the Clinical Director. In 2016, Dr. Pilcher was promoted to the position of Senior Executive Director of Care Management and Private Care. In 2018, Dr. Pilcher founded Clear Guidance in order to return to her passion of working directly with clients and their families.

Dr. Pilcher also presently serves as President of the New England Chapter of the Aging Life Care Association and is the Editor in Chief of the Journal of Aging Life Care.

Pamela B. Greenfield, Esq.
Attorney Pamela B. Greenfield is the founder of Greenfield Planning Group, LLC.  Attorney Greenfield’s roots are in elder law and long-term care planning for senior citizens.  She has a passion for helping seniors and their loved ones navigate through the continuum of care as they age and advising them on how to properly finance their options.  Attorney Greenfield focuses her practice in elder law, asset protection planning, and complex MassHealth applications and appeals.  She additionally represents families and skilled nursing facilities in guardianship and conservatorship matters as well as probate and estate administration.

Prior to opening GPG in July 2018, Attorney Greenfield headed up the elder law department at Samuel, Sayward and Baler, LLC in Dedham, Massachusetts, where she continues to see clients and serve as of counsel to the firm.  Prior to joining Samuel, Sayward and Baler in 2015, Attorney Greenfield practiced at Oalican Law Group, LLC (formerly Cohen & Oalican, LLP) since 2007.  She received her law degree from New England School of Law and her J.B.A. with distinction from the University of Wisconsin-Madison, where she majored in journalism.

Attorney Greenfield speaks frequently at nursing homes, assisted living facilities and senior centers in the Metro-Boston area.  She has served as both chair and panelist for various Massachusetts Continuing Legal Education (MCLE) programs.  Attorney Greenfield is an active a member of the National Academy of Elder Law Attorneys, Massachusetts Chapter, where she currently serves as vice president to the Chapter (2019).

Meghan Huber, JD

Ms. Huber is a recent graduate of New England Law | Boston, who recently sat for the July 2019 Massachusetts Bar Exam. Ms. Huber has a passion for planning and helping others in a meaningful way, and sees helping individuals and families plan for their lives as the best way to do that. Ms. Huber currently works as a Law Clerk on estate planning and elder law matters for Greenfield Planning Group.

Prior to Greenfield Planning Group, Ms. Huber clerked for both the Massachusetts Appellate Tax Board and the Law Office of Steven R. Long. In addition, she was a Student Attorney for the New England Law Clinical Office. Ms. Huber’s goal is to gain experience in the areas of both Elder Law and Estate Planning to prepare her for her future career as an Elder Law Attorney.

Jennifer Lansing Pilcher, PhD, CMC, Pamela Greenfield, Esq., Meghan Huber, JD

Older persons are believed to represent a majority of persons under guardianship (Wood, 2006). The aging of the population and the increase in the number of people experiencing Alzheimer’s or dementia means that an even larger number of older adults will be at risk of guardianship going forward. The Alzheimer’s Association predicts that the annual number of new cases of Alzheimer’s and other dementias is expected to double by 2050 (Alzheimer’s Association, 2015). The reality of these statistics is that a substantial number of adults will develop cognitive impairment as they age, rendering them incapable of making health care or financial decisions and placing them at high risk for guardianship in later life.

Guardianship, Power of Attorney, and Health Care Proxy are all examples of our traditional model in elder care of assigning a “substitute decision maker” when an elder no longer has the capacity to make decisions for themselves. Until recently, this has been seen by many as the primary remedy for situations when an elder’s capacity is in question.

However, Supported Decision Making (SDM), an emerging nationally recognized alternative to adult guardianship, may provide another possibility for thinking about and managing decision making in later life (National Center for Supported Decision-Making, 2014). SDM has been recognized by scholars as having the strong potential for promoting favorable outcomes in the lives of people with disabilities and older adults, and studies are underway to further verify such outcomes (Blanck & Martinis 2015; Whitlatch 2017).

That being said, although SDM has gained traction in advocacy for adults with disabilities, it has only recently begun to expand its model to include helping older adults. As a result, it has not yet taken hold in the elder care field in the United States. However, that may be changing thanks to efforts by groups like the National Resource Center for Supported Decision-Making, the American Bar Association, the Uniform Law Commission, the National Council on Disability, the National Guardianship Association, and Quality Trust for Individuals with Disabilities. In addition, in a November 2018 report, the United States Senate Special Committee on Aging specifically recommended that, among other reforms, states promote less-restrictive alternatives to guardianship, including Supported Decision-Making (United States Senate Special Committee on Aging, 2018).

The following is a discussion about the differences between our traditional models and SDM, the benefits and limitations of both, and how this model might be incorporated into future models for decision making for older adults.

The Traditional Model: Substitute Decision Making

Proactive Substitute Decision Making – Health Care Proxy and Power of Attorney

Health care proxies and durable powers of attorney are examples of proactive ways of voluntarily appointing or assigning a substitute decision maker. When developing such legal tools, the individual must have capacity to knowingly and voluntarily execute these documents. Usually, the individual appoints one or more persons to act as his or her decision maker in the event he or she does not have capacity to do so in the future. While this does empower the individual to choose the person they want to make decisions, these documents are often only invoked once an individual becomes incapacitated.

Reactive Substitute Decision Making: Guardianship

(Note: Different states have labels and requirements for Guardianship of Person versus Guardianship of Estate or Property. For the purposes of this article, we will simply refer to both as Guardianship).

Guardianship is a reactive state law process which occurs in court. It is the legal system’s response to an adult who is alleged to be mentally incapacitated or deemed unable to make legally binding decisions. Guardianship is frequently seen as a means of protecting the incapacitated adult through the court appointment of a substitute decision maker. Examples of people who may be subject to guardianship include older adults with cognitive decline, people with intellectual disabilities, and people with psycho-social disabilities, among others.

Guardianship has serious consequences. If a guardianship is deemed necessary, the individual loses some-to-all decision-making power, which frequently includes the right to choose where they live, how to spend money, with whom they spend their time, and with whom they have relationships (National Council on Disability 2018). An individual who has a guardian frequently cannot enter into contracts, authorize access to their own medical records, or make health decisions.

In our experience, guardianships are typically sought for older adults when a relative, friend, or institution believes either some legally binding decision needs to be made and the person is thought not able to make it; or the person is making decisions that are thought to be irrational and/or harmful to themselves.

When Guardianship functions as intended, substitute decision makers act responsibly and in keeping with the individual’s wishes. If done consistent with best practices, guardianship can be used to increase well-being and encourage preferences and choice. In fact, the National Guardianship Association promotes as one of its standards that the guardian shall “identify and advocate for the person’s goals, needs, and preferences” (National Guardianship Association, 2015).

However, many guardianships are not ideal. Despite major reform in many states in the late 1980s and late 1990s, efforts to improve the system seem to have had, at most, limited success due to a lack of implementation (Frolik, Lawrence A, 1998). Among the reforms, two important ideas were introduced. First was the idea of using “least restrictive alternatives,” and leaving guardianship as the option of last resort. This reform means that, in general, courts should reject guardianships when a person has in place sufficient alternatives, such as a Power of Attorney or other resources, services, and support to meet their needs. Second was the movement to change the standard for decision making by guardians from “best interest” to “substituted judgment.” In other words, guardians should be making decisions based on what the person would have decided if he or she were capable of doing so, rather than what the guardian believes is in the person’s best interest. However, questions have been raised as to whether reforms like these have actually been adopted into practice (National Council on Disability, 2018).

But what are the alternatives? Historically, for many older adults, there haven’t been any.  While assigning a surrogate decision maker while an individual has capacity is clearly preferable over guardianship, it still requires the appointed person to “substitute” their judgment for that of the elder, rather than supporting the older adult to make their own decisions.

What is Supported Decision Making (SDM)?

Supported Decision Making (SDM) is a method for supporting adults with disabilities and elders in making their own decision. The National Resource Center for Supported Decision Making describes supported decision making as:
…where people use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions – is a means for increasing self-determination by encouraging and empowering people to make their own decisions about their lives to the maximum extent possible.” (National Resource Center for Support Decision Making, 2016).

Supported Decision Making is a way for an adult with a disability to use their appointed decision makers to:

  • Help understand the issues and choices
  • Ask questions
  • Receive explanations in language he or she understands
  • Communicate his/her decisions to others

(Black & Martinis, 2015; Dinnerstein, 2012; Salzman, 2011; Whitlatch, 2018).

Supported Decision Making is not meant to replace measures such as Health Care Proxy or Power of Attorney. Rather, SDM provides a way for the individual to participate in the process for as long as possible. Through adoption of a Supported Decision Making model, older persons would appoint legally recognized supporters to help them make their own decisions, while also being able to plan for their future through advance planning documents. These supporters may be family members, professionals (Aging Life Care Managers, social workers, attorneys, etc.), and others the older person trusts. These advisors are tasked with explaining the facts and issues, offering non-controlling advice, making recommendations, and helping the person communicate his or her choices. Supported Decision Making may be formal or informal and may be documented through the use of release-of-information forms (e.g., HIPAA forms), written plans, and, in some states, statutorily recognized Supported Decision-Making Agreements.

Supported Decision Making is hugely important as it has the potential to increase the self-determination of people with disabilities. Multiple studies have shown that people with greater self-determination are more independent, more integrated in their communities, healthier, and better able to recognize and resist abuse (Powers et al, Shogren, Wehmeyer, Palmer, Rifenbark & Little, 2014; Wehmeyer & Schwartz, 1997 & 1998; Wehmeyer & Palmer, 2003; Khemka, Hickson & Reynolds, 2005; Wehmeyer, Kelchner & Reynolds, 1996). When denied self-determination, people can feel helpless, hopeless and self-critical (Deci, 1975). In addition, people without self-determination experience low self-esteem, passivity, feelings of inadequacy and incompetency, and decreased life outcomes (Winick, 1995; Wright, 2010). As a result, Supported Decision Making has the power to make a distinct improvement on a person’s quality of life.

The concept of Supported Decision Making is also related to the idea of Patient Centered Care, a theory well supported throughout most of the health care system in the United States. Patient Centered Care focuses on the particular preferences, values, and wishes of an individual in health care and life planning. Patient Centered Care has come to connote a process in which a disabled individual plans for the future by identifying goals and needed support to reach those goals with the assistance of others (Diller, 2016). Thus, this concept laid much of the groundwork for the development of Supported Decision Making in the United States.

Essentially, Supported Decision Making is something that most people utilize every day without realizing it. When adults make decisions regarding issues with which they are not familiar, such as taxes or car repair, they find a trusted individual or professional to inform their decision making. Although the formalized idea of SDM is somewhat new to the United States, the concept is gaining traction (see www.SupportedDecisionMaking.org).Thus, SDM is something that all professionals who work with individuals who have cognitive impairments should become familiar with and strive to incorporate into their practices. As the National Guardianship Association has recognized, SDM should be considered before guardianship and incorporated as part of a guardianship, if guardianship is necessary (National Guardianship Association, 2015).

A Shift in Thinking

Early roots of Supported Decision Making can be traced to the 1990s in Canada. At the time, proponents envisioned it as a method for removing legal barriers created by issues of capacity which prevented people with intellectual disabilities from participating in decision making. At this time, advocates proposed a system of support that would assist persons with disabilities in making decisions, even if that person would have been considered to lack the ability to make a decision under traditional legal standards (Bach & Kernzner, 2010; Brownin et al, 2014 Diller, 2016).

In recent years, there has been discussion about whether or not persons with disabilities should retain the right to legal capacity, even if they need support in decision making. Diller (2016) argues that people with disabilities should have the legal right to make decisions, regardless of his or her perceived ability to make decisions on their own.

One of the biggest indications of this shift in thinking on the international stage was the adoption of Article 12 of the United National Convention on the Rights of Persons with Disabilities (CRPD) in 2014.

Article 12 specifically states: “Parties [to this treaty] shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” (G.A. Res, 2006). Further, the Committee on the Rights of Persons with Disabilities issued General Comment to explain how Article 12 should be adopted and implemented (CRPD General Comment, 2014). The General Comment specifically states:

The Committee reaffirms that a person’s status as a person with a disability or the existence of an impairment…must never be grounds for denying legal capacity or any of the rights provided for in article 12. All practices that in purpose or effect violate article 12 must be abolished in order to ensure that full legal capacity is restored to persons with disabilities on an equal basis with others.”

This statement by the CRPD was an important first step in establishing the right to legal capacity for people with disabilities. The CRPD implies a shift from a system of substitute decision making, to a system of supported decision making. Proponents of Supported Decision Making see it as a “liberation” for people with disabilities who have up to now not been able to participate in the decision-making process (Bach & Kerzner, 2010; Diller, 2016). Although the United States has not ratified this treaty, the CRPD has been used to promote SDM in legal advocacy discourse (e.g., Dinerstein, 2012) and case law (e.g., In re Dameris L., 2012, available at  https://caselaw.findlaw.com/ny-surrogates-court/1619828.html).

This shift in thinking has also begun to be statutorily recognized in U.S. states which have adopted laws regarding supported decision making. As of May 2019, the states that now formally recognize SDM agreements include Alaska, Delaware, Wisconsin, Texas, D.C., Missouri, North Dakota, Indiana, and Nevada (Whitlatch 2019). Texas was the first state in U.S. to pass a Supported Decision Making Statute. This statute allows an individual with a disability to authorize a supporter who can assist the individual in making and communicating decisions. The statute is clear that the supporter may not make decisions for the person, but rather, is authorized to help obtain information to help the individual understand the decision.

Older adults and SDM – The Benefits

To date, Supported Decision Making has not taken hold with older adults to the same degree as it has with adults with non-age-related disabilities, either in theoretical discussions or in practice. For example, in Canada, while Supported Decision Making agreements have become popular in the intellectual disability community, it has not been as readily embraced by elder law practitioners or by the aging community (Diller, 2016).

In a 2016 article, Diller makes the argument that a shift away from guardianship to a right to legal capacity and the development of supported decision making should apply to older adults. Diller argues maintaining legal capacity and developing Supported Decision Making models for older adults will also preserve the autonomy of older adults as it has for younger disabled adults.

As with younger people with disabilities, older adults can benefit from greater autonomy and self-determination. Empirical literature on decision making and older adults shows that maintaining control over decisions of daily life is correlated with better physical and mental health outcomes (Diller, 2016).

Supported Decision Making could reduce the number of older adults under guardianship based on capacity determinations that are inconsistent at best. In order to have a guardianship put in place, often a determination of incapacity is required which can be subjective, not entirely accurate, costly, and time consuming.

Further, wider availability of SDM could reduce the number of guardianships that are pursued in order to solve practical problems. For example, guardianship can be used by a nursing home to deal with obstacles to discharge planning, personal fund management, Medicaid eligibility, or payment disputes with relatives. Diller (2016) argues that by using support like SDM, these issues may be able to be solved without stripping older adults of their rights.

Even though SDM has not been embraced officially, many older adults are practicing SDM informally by using family and friends for support in important decisions (Diller, 2016). Many older adults ask advice, seek explanations, or designate someone to interface with an agency on their behalf (Martinis & Blanck, 2015).

Why lack of adoption with Older Adults?

If that is the case, why is it that SDM has not been more widely adopted by older adults and their families? First, there is a lack of advocacy and movement about the struggle for rights of self-determination and legal capacity for older adults. This is understandable given that advocates for older adults may be more focused on the urgent need for research, resources, the demands of caregiving, and the prevention of elder abuse (Diller, 2016). As a result, older adults and their family members may be largely unaware that Supported Decision Making is an option for planning for later life decision making.

Second, older adults at risk of losing capacity are in a different position than younger cohorts. The idea of Supported Decision Making does not always resonate with the experience of older adults who have had decades of exercising and establishing their legal rights. An older adult is experiencing the possibility of requiring support for the first time in their lives, while young adults are developing the skills to become capable of decision making (Diller, 2016). This difference means that the process of setting up SDM may feel more empowering to a younger person with a disability than to an older adult who would rather not discuss the potential of losing their decision-making ability. As a result, older adults and their families may be more reluctant to adopt these practices out of denial or a wish to avoid the topic of risk of guardianship.

Third, Supported Decision Making can be seen as more time-consuming than other legal options. One Canadian study hypothesized that older adults are more likely to turn to advanced directives such as power of attorney because it is quicker and more efficient than the process Supported Decision Making requires (Diller, 2016).

Fourth, older adults can be more isolated and lack family or community support. This can mean they do not have people they can identify as supporters or as a health care agent under a power of attorney (Bach & Kerzner, 2010). Also, it can mean they are not aware of needing to assign a decision maker and will be at greater risk for guardianship due to not having a health care agent or POA in place prior to a finding of incapacity.

Fifth, some raise concerns that Supported Decision Making could make older adults more vulnerable to abuse. With guardianship, guardians are (at least in theory, although perhaps not in practice) (NCD 2018) monitored by the court and required to submit financial statements and plans of care. If an older adult has issues with the way his guardian is operating, he or she likely has the right under state law to ask the court to replace his guardian. With Supported Decision Making, however, there may be limited ways that the older adult can seek remedy for abuse or harm by a decision maker (Diller, 2018). The statutes in both Texas and British Columbia have language and requirements that attempt to address this issue. Still, more empirical data is needed to see how effective these mechanisms will be.

Lastly, there are concerns about how Supported Decision Making works with people who already have a diagnosis of dementia. Some believe that while SDM can work well with people with dementia to a point, it is still a question about how people with cognitive impairment might be able to continue to engage in SDM as their disease progresses. Kitwood (1997,1993), Sabat (2002), and others have urged against making assumptions that people with dementia cannot participate in person-centered care. Similarly, the National Resource Center for Supported Decision-Making also makes the case that people with dementia can participate in SDM. Diller (2016) and Whitlatch (2018) argue that with improved communication techniques and different forms of support, an individual with dementia may be able to participate in SDM for much longer than one might typically expect. Lastly, as dementia progresses, the individual’s supporters will be able to not only look back on a history of decisions and preferences, but also will have had a history of practicing SDM that will prepare them for making decisions when the individual is no longer able to participate in the process. (For more information about how SDM can work for people with cognitive impairment, please see additional submissions in this issue).

In summary, SDM is gaining visibility and traction in the elder care industry. While SDM provides a positive way for people with disabilities and older adults to participate in the decision-making process, there are challenges that need to be addressed before it will succeed in becoming a widespread practice. These challenges include ensuring appropriate safeguards for people with declining capacity, addressing and battling ageism and perfunctory assumptions of incapacity based on solely on diagnosis, and promoting wide-spread availability of advance planning options earlier in older adults’ lives. For Aging Life Care Managers, incorporating Supported Decision Making and similar self-determination principles into their practices should be considered a promising practice, one that is becoming more formally recognized in the United States.

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