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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abortion protest outside supreme court.

Abortion and the Law in America: Video Preview with Mary Ziegler

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.

The workshop is led by Professor I. Glenn Cohen, and presenters come from a wide range of disciplines and departments.

In this video, Mary Ziegler gives a preview of her paper, “Abortion and the Law in America: Roe v. Wade to the Present,” which she will present at the Health Law Policy workshop on October 19, 2020. Watch the full video below:

Illustration of a senior woman walking with modern robot dog

Exploring Elder Care Robotics: Emotional Companion Robots

By Adriana Krasniansky

This article is the first post in a four-part series looking at robots being developed for aging care, as well as their ethical implications. In this first article, we explore the rise of emotional companion robots such as the now-famous Paro, which are designed to soothe and comfort. 

What are Emotional Companion Robots?

Emotional companion robots deliver on a very basic definition of the term “companionship:” they provide emotional soothing and a constant presence for users. Many emotional companion robots are modeled after animal-assisted therapy (AAT) pets, which are trained to calm and support individuals with Alzheimer’s, dementia, and cognitive impairments.

AAT in elder care can be challenging; animals risk injury to patients, trigger allergies, and require regular exercise (and bathroom breaks). Animals may also refuse to cooperate, which can further agitate patients. Emotional companion robots have similar demonstrated outcomes to AAT—reducing stress, improving mood, and stimulating conversation—without the logistical hang-ups of animal care.  Read More

Pregnant woman sitting across desk from doctor wearing scrubs and holding a pen

Opioid Claims for Fetal Opioid Exposure Alarm Pregnancy Advocates

By Alexa Richardson

Lawyers calling themselves the “Opioid Justice Team” are pushing forward in their mission to certify babies exposed to opioids in utero, as well as “all women in the United States capable of becoming pregnant,” as distinct classes in the multi-district opioid litigation now unfolding in federal court in Ohio. Last week, lawyers filed an amended complaint on behalf of the legal guardians of individuals diagnosed with neonatal abstinence syndrome (NAS), and a list of “experts” with the court. Their claims misrepresent the science regarding fetal exposure to opioids and position fetal rights in opposition to those of pregnant people. National Advocates for Pregnant Women (NAPW) has issued a statement and fact sheet denouncing the claims.

In a series of court filings, sweeping claims about the impact of prescription opioid exposure on fetuses are being made. The lawyers falsely claim “[a]nything a pregnant woman ingests or breathes is transmitted to her baby by the placenta” and that “[i]n-utero opioid exposure leaves most children with physical, social, educational disabilities that require constant and regular interventions. Most of these disabilities are considered permanent.” In actuality, the American College of Obstetricians and Gynecologists states that the available data show “no significant differences” in long-term outcomes for individuals exposed to opioids in utero versus those who are not. The Centers for Disease Control (CDC) finds there may be early childhood impacts on cognitive or developmental abilities from prenatal opioid exposure. However, available studies struggle to separate the physical effects from environmental and social variables. There is not enough data to conclude whether any long-term consequences of fetal opioid exposure exist, the CDC finds.

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An embryologist pulls out of the dewar with liquid nitrogen straws with frozenn embryos and egg cells in infertility treatment clinic - Image

The Legal Limbo of Lost Embryos

Last summer, a group of cancer survivors and others struggling to have children held a memorial service for their “hopes and dreams lost.” That’s the message they had engraved on a bench in the Ohio cemetery where these would-be-parents-who-won’t mourned.

More than 4,000 of their frozen embryos and eggs were destroyed when a high-capacity freezer tank failed at University Hospitals Fertility Center in Cleveland one Saturday in early March 2018. Another thousand were lost the same weekend, after a similar malfunction at an unrelated clinic across the country, Pacific Fertility Center in San Francisco.

Some of those affected had made appointments to try to initiate pregnancies the very next week. All had undergone painful procedures and paid, in some cases, thousands of dollars to keep their materials suspended in liquid nitrogen at a constant −196°C. But that weekend in March, tank temperatures began rising, and by the time the Ohio lab technicians returned for their next shift, everything inside had thawed beyond rescue or repair. It’s not clear why remote alarms were turned off; investigations are ongoing. So far, only coordinated cyberattacks have been ruled out. Read More

human embryos under a microscope

A Lawsuit Involving an Alabama Man and a Fetus Is Particularly Threatening to Reproductive Rights

Last week Alabama passed the most restrictive abortion law in the country, criminalizing abortion of “any woman known to be pregnant,” with very limited exceptions that do not include rape or incest. But a recent case in Alabama presents an even more threatening challenge to reproductive rights.

In a new paper published in JAMA, the Journal of the American Medical Association, authors Dov FoxEli Y. Adashi, and I. Glenn Cohen, discuss a recent Alabama state court case involving a man suing an abortion clinic and the manufacturer of a pill that enabled his then-girlfriend to terminate her pregnancy at 6 weeks.

In a troubling decision, the court permitted the fetus be a co-plaintiff alongside the man in a “wrongful death” lawsuit. Read More