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July 21, 2023 Feature

New Legal Support Emerges for End-of-Life Decision Making

Megan S. Wright

Many of us will face cognitive impairments as we age. We may survive a stroke that results in permanent neurological damage that affects our ability to speak. Or we may get Alzheimer’s disease and experience memory loss.

These impairments can affect our decisional ability, including our ability to communicate our decisions, to understand information, to appreciate the significance of our decisions, and to reason. They can also affect the types of end-of-life decisions we can make by excluding some choices.

Medical aid in dying, or MAID, is one of the choices that can be impeded because, in the United States, it requires contemporaneous decisional capacity.

Cognitive impairments can also affect how we make medical and end-of-life decisions by precluding us from making those choices when they need to be made. They also threaten autonomy, a foundational value to many of us.

But recent developments in disability law, namely the facilitation of supported decision making, may help us prolong our autonomy despite our decisional impairments, including when we need to make end-of-life decisions.

How laws aid in decision making

For a long time, we’ve relied on advance directives, such as living wills, do-not-resuscitate orders, and health care proxy appointments to plan for the possibility of our future incapacity and to communicate the medical treatments we want or don’t want. But there are exciting new legal developments that can facilitate contemporaneous decision making for individuals with decisional impairments. And they can use these tools to access more end-of-life options.

Specifically, many states have adopted or are in the process of adopting supported decision making legislation. It’s an alternative to substitute or surrogate decision making, including guardianship, for persons with cognitive impairments.

With supported decision making, individuals seek support from others whom they trust to gather information relevant to a decision, to understand the information, to think through their decision, and to communicate their decision to others. They can seek and receive such support for many types of decisions, including choices about medical treatment or where to live.

This decision-making model is consistent with the UN Convention on the Rights of Persons with Disabilities, which declares that individuals with disabilities should “enjoy legal capacity on an equal basis with others in all aspects of life.”

The most recent version of the Uniform Guardianship, Conservatorship, and Other Protective Proceedings Act also incorporates aspects of supported decision making. It directs that adults shouldn’t be placed under guardianship without considering how decisional supports can help them show capacity.

Supported decision making can be informal. Indeed, when it comes to many significant decisions, most people seek help. For example, when we’re faced with important medical treatment decisions, we consult with our physicians and family members. Receiving such assistance is a form of supported decision making, which is not only for individuals with cognitive impairments.

Laws provide contract templates

But supported decision making can also be formalized through contract. Nearly a quarter of states have adopted legislation that provides supported decision-making agreement forms that allow for some customization based on the preferences of the principal—the supported person.

The forms must be signed and witnessed or notarized. They typically define the term of the agreement, the scope of the supporter’s authority, and their access to the principal’s confidential information. The forms instruct third parties to rely on the agreement unless they suspect the principal is being abused or neglected. And there are limitations of liability for good-faith reliance on the supported decision-making agreement.

With formal supported decision making, legislatures are explicit that supporters don’t decide for the principal. They’re also clear that principals can make decisions without their supporters.

Some have expressed concerns that supported decision making will subject individuals with disabilities to abuse or neglect. They also worry that it may facilitate the exercise of undue influence on the decisions of individuals with disabilities.

Supported decision-making legislation anticipates these concerns, however. Laws prohibit individuals convicted of certain crimes from serving as a supporter. Many forms also provide a warning to third parties presented with a copy of the agreement to report suspected abuse, neglect, or exploitation.

While some have argued that supported decision making should never be formal, the formality is what provides some of these safeguards.

Supported decision making can be used to assist older adults who acquire cognitive impairments, such as dementia, to maintain contemporaneous decision-making authority for as long as possible. This is especially beneficial with end-of-life decision making, and perhaps supported decision-making documents soon will become a routine part of estate planning.

Here’s how that could work. Imagine that during a recent appointment, your doctor tells you about different treatment options for your recurrent cancer, but you can’t quite understand everything she says. She’s using jargon, and you’ve recently found it harder to understand complex information.

Your spouse is also present, however, and so after the appointment, you compare notes. Your spouse also finds some articles about the treatments that are easier to understand. When talking over the options, you’re reminded about how terrible the nausea and fatigue from the last treatment were but also how excited you are for the upcoming birth of your grandchild. You decide on a conservative course of treatment.

On your next appointment with your doctor, you tell her what you’ve decided. When your doctor questions whether you really understand your decision given that you have a mild cognitive impairment, your spouse reiterates your choice.

How MAID fits in

If you develop a cognitive impairment, some end-of-life options may be unavailable to you. Medical aid in dying laws in the United States restrict their eligibility to terminally ill adults who voluntarily request and can self-administer a lethal medication.

They also require patients to have contemporaneous decisional capacity. A terminally ill person who can’t demonstrate capacity when requesting medical aid in dying is ineligible. And patients can’t use advance directives or rely on surrogate decision makers for MAID.

That means that ordinarily, a requirement that the patient have contemporaneous decisional capacity would preclude a terminally ill adult with a cognitive impairment, such as moderate dementia, from receiving medical aid in dying. This has led some to argue that MAID laws should change to permit the use of advance directives. But advance directives may lock individuals into preferences that may have radically changed since the loss of capacity.

For example, you may be unable to contemplate that your life would be worth living with dementia. But it’s possible that if you acquired dementia, you might find your life still has value and meaning to you. But if you’ve completed an advance directive designed to hasten your death if you develop dementia, you may be locked into prior wishes that conflict with your current interests.

Supported decision making can help avoid that type of lockin while increasing access to medical aid in dying. If a terminally ill individual with cognitive impairments could demonstrate decisional capacity with decision-making supports, MAID may still be available to them, should they desire it and are otherwise eligible. This is preferable to relying on advance directives because it allows current preferences to be the basis of the decision to use MAID or not.

There’s a natural fit between supported decision making and existing MAID laws, which are designed to facilitate collaboration between patients, physicians, and families. Medical aid in dying laws require extensive conversations between patients and multiple physicians, which demonstrates the value of expert consultation on a decision of such significance.

These laws recognize the importance of our family relationships. They require individuals seeking medical aid in dying to inform the state of whether they’ve notified their family and considered family input on their decision, whether they’ve chosen not to inform their family, or whether they have no family to inform.

The legal requirements to consult or collaborate with others and reminders to consider others’ interests can be considered “relational nudges,” in which the law promotes the exercise of relational autonomy.

Some worry that facilitating access to MAID through supported decision making will lead to vulnerable individuals being pressured to hasten their death. But there are many eligibility requirements in medical aid in dying as well as supported decision making that may assuage some of these concerns.

Most important is the terminal illness requirement for MAID. An individual with a cognitive impairment who’s not terminally ill but who has only minor physical ailments, for example, wouldn’t be eligible.

Further, laws authorizing medical aid in dying require the involvement of multiple physicians who can ensure the voluntariness of any requests. The laws also require that two witnesses attest that the individual making a written request isn’t “under duress, fraud or undue influence.”

There are thus many people who can intervene in the MAID process if they have concerns about the welfare of the supported person. Medical aid in dying laws balance respect for patient autonomy with protecting vulnerable individuals.

Looking ahead

With supported decision making, we can retain contemporaneous autonomy despite cognitive impairments we’ve acquired. We no longer have to rely solely on advance directives. With support, we can make decisions when they need to be made, and more end-of-life options may be available.

Colorado, Washington, and the District of Columbia have both medical aid in dying and supported decision-making, or SDM, laws. That means that terminally ill adults with decisional impairments that would otherwise disqualify them from MAID may still be able to access this end-of-life option. We don’t yet know if supported decision making is being used to expand access to medical aid in dying in these jurisdictions, however, especially given how recent the adoption of supported decision-making legislation is.

For supported decision making to facilitate medical aid in dying for adults with impaired decisional capacity, more states would need to adopt SDM legislation. Otherwise, physicians and healthcare organizations would be unlikely to permit individuals with cognitive impairments to receive MAID without the assurance of good-faith limits to their liability contained in supported decision-making laws, even though such limits to liability exist in MAID laws.

While some may be skeptical that states will relax their contemporaneous capacity requirements to access MAID, states have recently modified other common requirements. For example, residency has always been a requirement. But recent lawsuits in Oregon and Vermont have led to nonresidents receiving MAID from doctors in those states.

Additionally, MAID laws typically required a 15-day waiting period between requests for this end-of-life option. Some states have recently reduced this to 48 hours.

It’s not unreasonable to think that states may also allow individuals with cognitive impairments to access this end-of-life option with supported decision making. There are many reasons to extend access to this population—the importance of respect for the agency of all people, including individuals with cognitive disabilities; equal treatment under the law; and relief of suffering at the end of life.

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Megan S. Wright

Pennsylvania State University

Megan S. Wright is a professor of law, medicine, sociology, and bioethics at the Pennsylvania State University.