Los Angeles, California, United States. June 23, 2021: #FreeBritney rally at LA Downtown Grand Park during a conservatorship hearing for Britney Spears.

There’s More to Decision-Making Capacity than Cognitive Function

The Health Law, Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts. Though the Workshop is typically open to the public, it is not currently, due to the COVID-19 pandemic. However, many of our presenters will contribute blog posts summarizing their work, which we are happy to share here on Bill of Health.

By James Toomey

The doctrine of capacity is a mess.

From Britney Spears’s high-profile struggles to establish her own capacity to the countless, quiet challenges of so many older adults, the doctrine of capacity, which requires people to have the cognitive functioning to understand the nature and consequences of a decision in order for it to be recognized in law, is vague, normatively and medically challenging, and inconsistently applied.

This is a big deal — at stake in every capacity case is whether, on the one hand, an individual may access the legal rights most of us take for granted, to enter into contracts, buy or transfer property, or get married or divorced; or, on the other, whether the legal system will ratify a decision the “real person” never would have made.

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Map of remote execution requirements for advance directives.

Advance Care Planning in an Online World: State Law Activity and Challenges Since COVID-19

By Nikol Nesterenko, Jonathan Chernoguz, and Sarah Hooper

Advance care planning — the process by which an individual documents their wishes for health care in the event that they become incapacitated — has become particularly urgent during the COVID-19 pandemic.

However, individuals that wish to engage in advance care planning, and specifically to document their plans in a written form (i.e., advance directives), have faced significant hurdles due to legal execution requirements. State advance directive law often requires or presumes live, in-person witnessing or notarization, actions which were prohibited by social distancing orders or simply unsafe during the pandemic.

In this piece, we summarize the state of remote execution requirements for advance directives before and during the COVID-19 pandemic. Broadly speaking, while many states took some action in this regard, most did not enact comprehensive changes, and therefore failed to meaningfully facilitate remote execution of advance directives.

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Hourglass

A Medical Student Reflects on the Value of Time During the COVID-19 Pandemic

By Jess Ma

He passed away on the 107th day. After I got home in the evening, I wrote down everything I could remember about him in my journal. For many days after his death, I often dreamed I was standing in that fluorescently bright ICU room. In the dreams, I would be watching him, and then he would wake up and start speaking to me, with those bright blue eyes glittering with animation and life. I always awoke feeling a little unsettled, not by his death, but rather by the fact that I knew so intimately the ways in which he was kept alive, and yet nothing about the life he lived until just hours before his final breath.

He was an existing patient on the unit when I joined the surgical ICU team, and for 10 days I followed him, tracking how every organ system was doing each day. Everyone on the team knew there was only one way this would end; his quality of life had deteriorated so rapidly since the early summer, after a bout of necrotizing pancreatitis and multiple tragic complications; he was barely able to interact with his own body, much less his environment, and his life was propped up precariously by every possible machine that could perform the function of a vital organ. For him, no medical intervention would add more significant chapters to his story. It was just a matter of when his daughter would be ready to close the book.

Because of the pandemic, visitors were only allowed after 12pm each day. When his adult daughter came to visit each afternoon, I was told to avoid intruding on their cherished private time together. I only ever really saw her shadow behind the drawn curtain as I walked past the room; and I knew that one of the surgeons on the service (a group of surgeons rotated between trauma, acute care, and surgical ICU) would routinely give her calls or meet up with her to discuss how her father was doing, even on days he had off. Surgeons are not generally thought off as doctors who can spend a lot of time just talking to patients – after all, in the time he spent on one of those daily conversations, he could complete an appendectomy. Though neither he, nor the rest of the team, could offer a magic solution, what he offered was crucial – his time.

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Dried psilocybe cubensis psilocybin magic mushrooms inside a plastic prescription medicine bottle isolated on white background.

The Myth of Psychedelic Exceptionalism

By Dustin Marlan

The “latest frontier” in drug law reform is the loosening of legal restrictions on psychedelics, such as psilocybin, ayahuasca, and ibogaine. But not all drug reform advocates are thrilled about this development.

Some are concerned that singling out psychedelics for legalization or decriminalization perpetuates the stigma surrounding other illegal drugs. Most prominently, Dr. Carl L. Hart, professor of neuroscience and psychology at Columbia University argues that all drugs “interact on receptors in the brain to produce their effects… we shouldn’t be treating some drugs as if they’re special while others are somehow evil.”

“Psychedelic exceptionalism” describes an ideology that claims psychedelics should be privileged for reform, but other purportedly more harmful drugs, like heroin and cocaine, should remain prohibited. As journalist Madison Margolin frames the question, “Should psychedelics be treated so differently from other drugs, given that any substance may have the power to soothe or scorch the human psyche, and body too?”

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Oxygen mask as part of artificial lungs ventilation machine in surgery room, closeup.

Pandemic Highlights Need for Quality and Equity in End-of-Life Care

By Elizabeth Clayborne

I was a little less than six months pregnant when the COVID-19 pandemic hit in 2020. As an Emergency Physician, I am well aware of additional risks that my job often exposes me to on a daily basis. We frequently face physical and emotional strife from unstable psychiatric patients, critically ill nursing home residents, sexual assault victims, and newly diagnosed cancer patients.

People who work in an emergency department tend to understand what comes with the territory: a lot of hard work, unexpected outcomes, and daily traverses of the human experience, from the best emotions you can imagine, to lowest depths of human despair. This is what accompanies caring for every ailment for people from all walks of life. I actually love this part about my job! I never know what I’m going to see when I walk through the doors.

That said, being a frontline physician during COVID-19 has provided me with a profoundly different lens on the pressures surrounding health care workers. And experiencing this while pregnant was pretty terrifying.

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Healthcare workers carrying signs protest for improved Covid-19 testing and workplace safety policies outside of UCLA Medical Center in Los Angeles,Dec. 9, 2020.

Beyond 20/20: The Post-COVID Future of Health Care

By Cynthia Orofo

There are two experiences I will never forget as a nurse: the first time I had to withdraw care from a patient and the first day working on a COVID ICU.

Both were unforgiving reminders that the ICU is a demanding place of work that will stress you in every way. But the latter experience was unique for a few particular reasons. Before the end of that first shift, I had overheard several staff members on the floor speak about their fears, thoughts of the unknown, and their version of the “new normal.” As I realized that life would almost certainly not be the same, I developed my own vision of the “new normal” of health care.

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Emergency department entrance.

Pandemic Lays Bare Shortcomings of Health Care Institutions

By Lauren Oshry

In 1982, when AIDS was first described, I was a first-year medical student in New York City, the epicenter of the epidemic in the U.S. To the usual fears of a medical student — fears of failing to understand, to learn, to perform — was the added fear of contracting a debilitating and universally fatal infection, for which there was no treatment. But our work felt urgent and valued, and the camaraderie among medical students and our mentors is now what I remember most.

Nearly forty years later, my experience as an attending oncologist during COVID-19 has been different. Yes, I am older and less naïve, but also this pandemic has been managed in fundamentally different ways. Aside from the obvious federal mismanagement, my own institution has deeply disappointed me. The institutional shortcomings we had long tolerated and adapted to were laid bare by the COVID-19 pandemic, and massively failed our patients and morally devastated those of us on the frontlines.

As a provider in a large safety net hospital, I care for a predominantly minority population in the lowest economic bracket. These would be the individuals disproportionately affected by COVID-19, with highest rates of infection and worse outcomes. My patients have the additional burden of cancer.

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Senior citizen woman in wheelchair in a nursing home.

Seniors’ Perspectives on Dementia and Decision-Making

By James Toomey

In order to make a decision recognized in law — to enter into or enforce a contract, buy or sell property, or get married or divorced — an individual must have the mental capacity the law requires for the decision. As people, especially older adults, develop dementia, their decision-making abilities are increasingly compromised, and the law begins to find that they lack capacity for particular decisions.

The standards governing capacity determinations, however, are notorious for being vague, inconsistently applied, and excessively curtailing the rights of those with dementia. Part of the problem, I think, is the lack of an agreed-upon normative theory for when in the course of dementia the law ought to intervene in individual decision-making. That is why, here on Bill of Health, I’ve previously called for understanding the perspectives of seniors — the population affected by the doctrine of capacity most closely and most often — on this normative question.

In my recent publication “Understanding the Perspectives of Seniors on Dementia and Decision-Making” in AJOB Empirical Bioethics, I’ve begun to do so, reporting the results of an empirical study that I conducted with the Petrie-Flom Student Fellowship in the 2018-19 academic year. The study, which involved an online survey of and interviews with older adults, revealed a heterogeneity of ways of thinking about the problem, supporting a flexible legal doctrine that would assist people in making their own choices. Notwithstanding the diversity, however, the data reveal several conclusions and tensions of interest to academics and healthcare and legal practitioners.

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Empty hospital bed.

Addressing Health Inequities in End-of-Life Care in the Era of COVID-19

By Megan J. Shen

Inequities in end-of-life care have been exacerbated by the COVID-19 pandemic, but have yet to receive the same level of attention as some other health disparities brought to the fore recently.

Quality end-of-life care is focused on reducing human suffering and aiding patients in receiving support during the dying process.

Traditionally, poor quality end-of-life care involves the overtreatment of patients, as in the case of continuing to treat incurable cancer aggressively. However, COVID-19 has introduced new challenges in achieving quality care at the end of life. Specifically, it is now more challenging to reduce human suffering at the end of life because of limitations in providing access to two critical resources: (1) medical care that can relieve physical suffering in the dying process and (2) support, such as loved ones, as well as needed psychological, spiritual, and physical support to cope with the existential threat of dying. COVID-19 has made access to both of these a greater challenge for underrepresented minorities.

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