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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Abortion rights protest following the Supreme Court decision for Whole Women's Health in 2016

How Social Movements Have Facilitated Access to Abortion During the Pandemic

By Rachel Rebouché

Before the end of 2021, the U.S. Food and Drug Administration (FDA) will reconsider its restrictions on medication abortion. The FDA’s decision could make a critical difference to the availability of medication abortion, especially if the Supreme Court abandons or continues to erode constitutional abortion rights.

Under that scenario of hostile judicial precedents, a broad movement for abortion access — including providers, researchers, advocates, and lawyers — will be immensely important to securing the availability of remote, early abortion care.

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police cars lined up.

Policing Public Health: Carceral-Logic Lessons from a Mid-Size City

By Zain Lakhani, Alice Miller, Kayla Thomas, with Anna Wherry

When it comes to public health intervention in a contagion, policing remains a primary enforcement tool. And where a health state is intertwined with carceral logics, enforcement becomes coercive; emphasis is placed on the control of movement and behavior, rather than on support and care.

Our experience in New Haven during the first few months of the COVID-19 pandemic well illuminates this, while also revealing a logic of exceptional force lying dormant in municipal health practices.

Attending to the local is all the more important, albeit difficult, for fast moving and intensely quotidian practices, as COVID in the U.S. seems to be settling in as a pandemic of the local.

Our experience as activist-scholars working with a New Haven-based sex worker-led harm-reduction service and advocacy group, SWAN, suggests that by focusing on municipal practices, we can better understand what public health police power actually is. By orienting our scholarship toward the way social movements engage with local politics, we can then address how these police powers complicate the ability of those most at risk of both disease exposure and police abuse to engage with local authorities. Absent this engagement and critique, progressive policies for constructive state public health powers may be more vulnerable to attack from the right.

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Police car.

Blurring the Line Between Public Health and Public Safety

By Jocelyn Simonson

Collective movement struggles during the twin crises of COVID-19 and the 2020 uprisings have helped blur the concepts of public safety and public health.

These movements have shown how all of our public health and all of our public safety suffers when we use the police, prosecution, and prisons to solve our collective problems. Their collective resistance to the status quo underscores how these terms — public health and public safety — too often carry with them an exclusionary understanding of which “public” matters.

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Person typing on computer.

COVID-19 and the New Reproductive Justice Movement

By Mary Ziegler

The COVID-19 pandemic has transformed advocacy for reproductive rights and reproductive justice in what previously had been called an endless, unchanging, and intractable abortion conflict.

The pandemic — and the stay-at-home orders it required — finally shifted the movement’s focus to abortion access, rather than abortion rights, as exemplified by its emphasis on medication and telehealth abortion.

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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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Disability with technology line icon set.

Reflecting on the Struggle for Disability Rights a Year into the Pandemic

By Amalia Sweet

On March 9, the Petrie-Flom Center and Harvard Law School Project on Disability gathered a panel to discuss the extent to which the pandemic has set back progress toward ensuring the rights of persons with disabilities.

Though calls for solidarity in March 2020 declared the emerging pandemic to be a “great equalizer,” the past 12 months have demonstrated how the pandemic has exacerbated existing social inequalities, disproportionately impacting the already marginalized.

The panel discussion, hosted by Petrie-Flom Center Senior Fellow in Global Health and Rights Alicia Ely Yamin and moderated by Harvard Law School Project on Disability Executive Director Michael Ashley Stein, provided voice to the uniquely and acutely devastating impacts of the pandemic on persons with disabilities, who are still struggling to secure protection of their basic rights.

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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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Abortion rights protest following the Supreme Court decision for Whole Women's Health in 2016

Book Review: Mary Ziegler’s ‘Abortion and the Law in America’

By James Toomey

If you want to understand America, you must understand our politics of abortion. And if you want to understand our politics of abortion, you must read Mary Ziegler’s recent legal history, “Abortion and the Law in America: Roe v. Wade to the Present” (2020).

In comprehensive detail and in a singularly fair and thoughtful way, Ziegler tells the story of American regulation of abortion from the Supreme Court’s historic Roe v. Wade decision to the present, and looks ahead to an uncertain future. Through vignettes of activists who have dedicated their lives to one side of the debate or the other, Ziegler shows that, notwithstanding the superficial constancy of the abortion debate — one side proclaiming the constitutional, essential rights of the fetus, the other the similarly irreducible right of bodily autonomy — the character of the debate, and the kinds of arguments made, have shifted over the course of the last fifty years.

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abortion protest outside supreme court.

The COVID-19 Pandemic Reveals the Stakes of the Campaign Against Abortion

By Mary Ziegler

Once again, we’re talking about whether abortion counts as health care. The COVID-19 pandemic has sparked new efforts to limit access, from the government’s unwillingness to lift in-person requirements for medication abortion to the introduction of stay-at-home orders blocking access altogether. The campaign to frame abortion as a moral, not medical, issue began decades ago. The pandemic has revealed the broader stakes of this campaign — and what it might mean for access to care well after the worst of the pandemic is behind us.

For antiabortion leaders, there are obvious strategic reasons to insist that abortion is not health care. The stigma surrounding abortion is real and durable. Notwithstanding recent increases, many obstetric programs do not provide comprehensive abortion training (if they provide any training at all). A 2020 study in Plos One found that a majority of patients believed that they would be looked down upon “at least a little” for having had an abortion. This perceived stigma affects those refused abortions — and causes longer-term adverse mental health outcomes. Stigma has long been an effective tool for the antiabortion movement. The pandemic has done nothing to change that.

But, put in historical context, today’s effort to treat reproductive services as unessential means much more. That campaign is part of a broader agenda to undermine the idea of an autonomy-rooted abortion rights — and lay the groundwork for overturning Roe v. Wade.

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