Peace-of-Mind Laws Near the End of Life

Today we hear from Kathy L. Cerminara and Carline Vidal Martinez who shed a light on the peace-of-mind laws of advance care planning and advance directive statutes through a TJ lens.

In two previous blog posts, one of us, with another co-author, defined “peace-of-mind laws” and provided examples. A recent bioethical debate about the value of advance care planning (“ACP”) for end-of-life medical decision-making prompts a therapeutic-jurisprudence-based analysis of advance directive statutes (“AD statutes”) as peace-of-mind laws.

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ACP involves “conversations between patients and clinicians about patients’ goals and values.” AD statutes work hand in hand with ACP. They authorize the execution of written documents memorializing medical treatment wishes in case of later loss of decision-making capacity. They also recognize verbal statements a person makes about medical treatment wishes as advance directives, to be considered along with written documents as part of in-the-moment medical decision-making after the person’s incapacity. Both the written documents and the verbal statements are properly considered advance directives (“ADs”).

At one time ACP focused on completing the written documents, but now it focuses more broadly on “helping people make complicated decisions when they become seriously ill.” Very near the end of life, such decisions may be memorialized not only in ADs but also in Physician Orders for Life-Sustaining Treatment (POLSTs). This post refers to laws authorizing both ADs POLSTs when using the term “AD statutes.”

History illustrates that one purpose of AD statutes was to quell conflict. They have been passed in many countries in the aftermath of highly publicized, tragic, end-of-life decision-making conflicts. For example, Italy passed an advance directive statute a few years after the long-litigated death of Eluana Englaro in 2008. In the United States, California passed the nation’s first AD statute in the 1970s, at around the same time that the parents of Karen Ann Quinlan (a young lady in a vegetative state) obtained an order from the New Jersey Supreme Court authorizing the foregoing of ventilator support, which it permitted as “Karen’s choice, if she were competent to make it.” Years later, the United States Congress passed a statute intended to increase completion of and compliance with advance directives after a case involving Nancy Cruzan, another young lady in a vegetative state whose parents had to go to court to discontinue her treatment. In deciding her case, the United States Supreme Court had implied that determination of her wishes, which would govern, would have been much less contentious had she executed an advance directive. The hope was that the presence of an advance directive would bring peace of mind to those making decisions on her behalf and to the doctors being asked to comply with those decisions. All 50 states now have AD statutes.

ACP is the process of discussing a person’s wishes that should either accompany execution of ADs or elaborate on and provide context for the text of an already-existing AD. Experts in palliative care, however, recently have questioned the value of ACP (Morrison et al., 2021). They point out, accurately, that too often patient preferences are not actually documented, either in advance directives or in medical charts. Moreover, they cite well-conceived studies finding that ACP had not impacted subsequent health care decisions on behalf of the patients involved. They characterize the goal of ACP as being “goal-concordant care near the end of life for patients who lack decisional capacity” and argue that the data demonstrates that goal is not being achieved.

We suggest that the goals of both ACP and AD statutes are better viewed through a therapeutic jurisprudence lens. Rather than focusing solely on whether decisions about care match those of the patient, the goals of ACP and AD statutes should be broadened to include mental health as a consideration. A focus on the mental health effects of AD statutes reveals that the statutes are peace-of-mind laws and ACP assists in creating that peace of mind.

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Advance Directive Statutes As Peace-Of-Mind Laws

As explained previously, peace-of-mind laws are those (a) whose absence creates constant worry and concern, (b) over the long term, (c) for the quality of life of defined groups of people. Presence of a peace-of-mind law (a) reduces stress and improves quality of life, which (c) brings about peace of mind.

Given the history of AD statutes, whose very raison d’être was to quell conflict, it is self-evident that citizens electing legislators, as a broad group, worry that conflicts over their end-of-life treatment may arise at a future date. Such worry continues over the years, sometimes at the surface of consciousness but more often as a subliminal, unnoticed concern. It affects the quality of life of at least two defined groups of people: those executing ADs and those who will be making medical decisions in case of a patient’s incapacity. While there is no universal application or implementation of ADs, their creation has helped many cope with complicated emotions surrounding the reluctance to discuss future pain or death.

Additionally, individuals who have shared experiences with ACP with a family member have noted that the process accompanying that family member’s completion of ADs gave the family a profound source of comfort (Curtis, 2021). These stories are examples of the ways in which ACP can support “resilience, understanding, feelings of peace, and recovery from grief.” The presence of the AD statutes, coupled with ACP, greatly improved the quality of life for both defined groups.

Proper execution of ADS in conjunction with good ACP leads to peach of mind

A considerable number of experts question the value of ACP in its current form in conjunction with  AD execution. It is true that ACP may not serve the purposes outlined above if it is structured methodically as a series of responses to series of scenarios unaccompanied by an exchange of information about goals and values underlying the responses. Instead, to serve the peace-of-mind goals of AD statutes, ACP must be used as a tool to encourage in-depth discussion about how future medical decisions might affect the patient’s quality of life.

It is also true that even ADs executed after such thoughtful discussion might lead to false hope that the care decisions they memorialize will be carried out. Each state has its own variation of AD statute. Some AD statutes and forms incorporate vague terms and facilitate conflicting understandings. Even if precisely written, a patient’s preferences may seem inconsistent or difficult to apply in real-life situations. For instance, a patient may state a clear preference for refusing mechanical ventilation but not address other types of breathing support. Expressly discussing the values underlying the refusal of mechanical ventilation may shed light on the patient’s probable decision regarding another type of breathing support.

ACP should not be discarded, however, because of that potential for false hope. As demonstrated above, even if future care decisions will not precisely reflect a patient’s concrete statements, ACP is essential for serving the peace-of-mind purposes of AD statutes. AD statutes exist not simply to enable patients to memorialize end-of-life treatment wishes, but also to provide both those executing ADs and those who may be bound by them in the future with peace of mind about facing the end of life. Goal-concordant care is important, but even if it is not always achieved, the peace of mind that can result from the ACP/AD execution process is worthy of pursuit alone.

Sources:

Curtis, J. Randall. “Three Stories About the Value of Advance Care Planning,” J. Am. Med. Assoc. 2021; 326(21):2133-2134.

Morrison, R. Sean, Meier, Diane E., & Arnold, Robert M. “What’s Wrong With Advance Care Planning?” J. Am. Med. Assoc. 2021; 326(16):1575-1576.

About the authors