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09/18/2020 - 3:00am

This week, the Michigan House of Representatives introduced Resolution 314: A resolution to affirm the right of patients and families to direct health care decisions. Among other things, the Resolution addresses medical futility conflicts:

"Whereas, The fundamental rights of life and liberty in the Bill of Rights demand that a robust and protective legal due process be guaranteed when a decision to withhold or withdraw life-sustaining treatment is in dispute. If notice to withdraw life-sustaining care is contested by a patient advocate or family member, care should not be withdrawn until a full and fair hearing is conducted by an impartial decisionmaker to protect the patient’s rights."...

09/17/2020 - 9:32pm

Join me on Wednesday, September 30, 2020, 3:30 PM - 5:00 PM Central for Hot Topics: Cool Talk - Physician Assisted Suicide. I will debate John B. Kelly, Director of Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide and New England Regional Director of Not Dead Yet. Register for free.

09/17/2020 - 11:00am

By Kimani Paul-Emile

When considering those on the front lines of the coronavirus pandemic response, most people likely envision doctors and nurses. However, there is an often forgotten, front-line workforce comprised of orderlies, nursing facility workers, and nursing assistants (“NAs”) that earns very little money, has few protections, and is largely Black and Brown and female. Many individuals in this group are also subject to a unique form of discrimination: rejection on the basis of their race or ethnicity by some of the very patients they are assigned to aid.

The millions of people who make up this group of essential workers constitute a substantial portion of the health care workforce and earn an average of $13.48 per hour despite the risks they take. Their work, which involves bathing, dressing, and feeding patients; brushing their teeth, and assisting with their use of the toilet, puts these workers at high risk of contracting COVID-19. Nevertheless, early in the pandemic, many of these workers lacked or had inadequate personal protective gear due to the tiered system used for distributing this equipment. Doctors and nurses were first in line for smocks, masks, and other essential gear; last were members of this underappreciated group of front-line health care workers.

According to the CDC, as of September 8, 2020, more than 156,562 health care workers have contracted the novel coronavirus, and more than 694 have died. These numbers are rising every day. The CDC also reports that a majority of health care workers who contracted the virus believe that they were exposed through their work. Still, these undervalued front-liners are often compelled to use their sick leave or vacation time when they become ill, and very few receive hazard pay. This is so even though virtually every hospital in the country received millions of dollars from the CARES Act, which is the coronavirus relief package passed by Congress in March 2020. In fact, some people in this underappreciated workforce have relied upon GoFundMe campaigns to raise money for a hotel room or an Airbnb in which to self-isolate as a means of protecting their families from the virus that they are exposed to at work.

In addition to these COVID-19-related risks, this group of largely Black and Brown workers also faces a particular type of discrimination that is difficult to address, and which occupies a legal gray area. This discrimination occurs when patients reject their assigned health care worker based on the worker’s race or ethnicity.

While this fairly common, but until recently, little-discussed phenomenon affects doctors and other health care providers, it has a disproportionate impact on those on the front lines of patient care. Think of the scenario where the patient declares, “I don’t want that Chinese nurse’s aide in my room. Get me a white American one!” Indeed, patients in the age of COVID-19 are increasingly announcing that they don’t want to be treated by health care workers who present as East Asian due to racial bias and unfounded fears that they are more likely to carry the coronavirus.

These prejudices and stigma have been stoked by President Donald J. Trump, who has called the virus the “Kung Flu” and the “China Plague.” And this type of patient discrimination is familiar to other, particularly Black, front-line health care workers of color, who have long been the target of patient prejudice.

When this patient discrimination occurs in an emergency department, hospitals are often at a loss for how to respond because this phenomenon implicates several, often conflicting laws. For example, patients have a right to informed consent, which includes the right to refuse wanted treatment from an unwanted health care worker. Individuals also have a right to receive a medical screening and stabilizing treatment in accordance with the Emergency Medical Treatment and Active Labor Act (EMTALA) when they arrive in an emergency department.

Health care workers, however, have employment rights that must be respected. This includes the right to a workplace free from certain types of discrimination, including discrimination on the basis of race and ethnicity. Therefore, if a health care institution continually reassigns workers without their consent in response to a patient’s discriminatory demands, then it may be found to have created a hostile work environment in violation of Title VII of the 1964 Civil Rights Act.

These seemingly incompatible rights and obligations can create problems for a health care institution. If it accommodates the patient’s wish for an NA of a different race or ethnicity, it may be discriminating against the assigned NA and opening itself up to legal liability. But if it doesn’t accommodate the patient’s demands it may violate laws against battery by forcing the patient to be treated by an unwanted NA without consent. But if it doesn’t screen and stabilize the patient, it could be liable for violating EMTALA.

The U.S. has a very patient-centered culture of care, which is important, but we should not forget our front-line health care workers. Ethical guidelines can suggest ways to deal with these difficult patient encounters. Any long-term solution, however, must involve the health care industry acknowledging the vulnerability of these workers and recognizing explicitly that both health and health care are undermined by the racism and structural inequality that cause these workers to be underpaid and undervalued despite being deemed “essential.”

 

Kimani Paul-Emile is a Professor of Law; Associate Director and Head of Domestic Programs and Initiatives at Fordham Law School’s Center on Race, Law & Justice; and faculty co-director of the Fordham Law School Stein Center for Law & Ethics. 

The post COVID-19 and the ‘Essential’ Yet Underappreciated Front-Line Health Care Worker  appeared first on Bill of Health.

09/17/2020 - 7:00am

By Michele Goodwin

Years before George Floyd begged to be released from under the knee of Officer Derek Chauvin, Barbara Dawson, a fifty-seven year old Black woman, died begging a police officer, John Tadlock, not to remove her oxygen mask. Her death occurred right outside the Calhoun Liberty Hospital in Blountstown, Florida, shortly before Christmas in 2015.

Just before Officer Tadlock’s arrival, Ms. Dawson arrived at the hospital seeking oxygen. The hospital’s response to Ms. Dawson’s request was to call law enforcement. Photographs show Ms. Dawson slumped next to the police car. A police recording captures the tragic end of Ms. Dawson’s life. Officer Tadlock reprimands Ms. Dawson: “Falling down like this and laying down, that’s not going to stop you from going to jail.”

Ms. Dawson’s life ended on the pavement, feet away from the entrance of the hospital that phoned the police on their patient — because she refused to leave. She lay there nearly twenty minutes before being pronounced dead. It turns out she had a blood clot in her lungs.

In some sense, there is nothing extraordinary about the image of Ms. Dawson, or the interactions of the hospital and officer, which further complicates the deadly exchange. Indeed, the interaction was far too normal: Black women fear for their health and safety when they do not seek care and, troublingly, even when they do.

When I first saw a photo of Ms. Dawson, cloaked in her red church hat and Sunday clothes, it reminded me of the sepia-hued images of southern, Black grandmothers lined up for church. All that seemed normal – just as ordinary as being transported to a hospital in an ambulance, complaining of severe pain, and expecting to receive care. Yet, in the case of Black women, what is common is the fear and risk of being denied appropriate medical services and being turned away.

Officer Tadlock says, “You can either walk out of here peacefully or I can take you out of here.” Ms. Dawson, panting while the officer calmly informs her of those terribly constrained options (notably, neither includes giving her the oxygen she needs), fitfully calls on God. Tadlock then reaches to remove her oxygen mask. “Let’s take this off,” he says. Dawson responds, “You can’t take that off.”

My law students are sometimes confused by how they should relate to this. Officer Tadlock speaks in a calm, almost entreating voice. For many of them, this is not what racism sounds like.

When Ms. Dawson refuses to surrender the oxygen mask, hospital staff gesture to the wall, informing Officer Tadlock that the oxygen supply hose could be disconnected from a port located there. The officer does so; he disconnects the hose. Afterward, Ms. Dawson wails, “Leave me alone, leave me alone … I can’t even breathe … I beg you.” Her options were constrained; there was not much she could do except to beg, in essence, for her life. Within a short while, she would be dead.

Ms. Dawson’s death reveals the troubling ways in which Black women are marginalized again and again, even as they seek medical care. Their health suffers under systemic racism, exacerbated by sexism.

Dire maternal mortality rates bear this out. On a national level, Black women are nearly four times as likely to die as white women due to maternal mortality. At the local level, their death rates compared to white counterparts may be ten or fifteen times as high. Such a system not only snatches women’s lives, but also causes them to suffer in the process.

Indeed, racism in health care, expressed through implicit and explicit biases, is the ultimate form of suffocation. Such racism, often compounded by sexism — not only impedes access, but it stifles the ability to properly advocate for oneself — sometimes, tragically, to a suffocating, deadly effect.

 

Michele Bratcher Goodwin is a Chancellor’s Professor at the University of California, Irvine and founding director of the Center for Biotechnology and Global Health Policy. 

The post Black Women Can’t Breathe appeared first on Bill of Health.

09/17/2020 - 2:30am

The summer issue of the Dutch Journal of Medicine focuses on the self-chosen end of life (het zelfgekozen levenseinde). The articles discuss how euthanasia has developed in the Netherlands since 1975. 

As Joeri Tijdink and Bert Keizer write in an opening editorial, "one of the most striking aspects of euthanasia practice is the constant shifting of the boundaries within which euthanasia is considered justified."...

09/23/2020 - 11:04pm
IEET Fellow Kevin LaGrandeur has recently been appointed to the editorial boards of two new journals dealing with ethics and emerging technology: AI & Ethics, and The Journal of Posthumanism.  He has also been appointed to the Advisory Board of the Lifeboat Foundation, whose mission is “encouraging scientific advancements while helping humanity survive existential risks and possible misuse of increasingly powerful technologies, including genetic engineering, nanotechnology, and robotics/AI…’
09/16/2020 - 10:34am

By Craig Konnoth

In the 1980s, a vanguard of critical race theorists debated their contemporaries as to whether law could or should play a role in achieving equity — in particular, racial equity. Scholars such as Kimberlé Crenshaw and Patricia Williams argued that while legal discourse historically had been used to oppress Black, Indigenous, and people of color (BIPOC), history had shown that in the law also lay the seeds of empowerment. Conceptualizing BIPOC as persons endowed with legal rights, and as a community subject to heightened legal solicitude because of the historical injustices they have faced, has helped undergird their selfhood, dignity, identity and activism. Law could thus be a discourse of despair — but also one of hope.

Whether or not the years have proved those claims correct as to the law, today, a similar debate unfolds in the context of race, medicine, and health care. Today, medicine and the health care system embody discourses of power that rival the law. Will these discourses inevitably serve to oppress BIPOC — and if not, how can we harness their power to achieve justice? Those are the questions that this symposium seeks to answer.

Medicine and the health care system engage power discourses that can harm or help. The pronouncements of doctors, nurses, insurers, hospital administrators, school counselors, social security adjudicators, and many more, delineate the relationship between the health system and race. They frequently determine the life course of those they address: whether a child gets a fair education or suffers discipline, whether a person living with a disability gets access benefits, or is denied, and indeed, in many cases, whether someone lives or dies.

Further, medical discourse, and the power it exudes, is no longer limited to medical institutions. Consumers are increasingly conceptualizing of themselves using constructs developed in medical contexts. Their self-understandings and those of their families and communities are shaped through genetic profiles easily obtained through consumer testing kits. Their existence and behaviors are biometrically quantified through apps that measure their heart rate, brainwaves, and sleep and ovulation patterns. Their emotions and moods are partially — or fully — encompassed by medical concepts.

And medical institutions themselves encourage this dynamic, often for magnanimous reasons. Many institutions have started to engage lay individuals in developing medical policy and practices. Further, it has become clear that health and welfare is governed as much by social and environmental forces — so-called social determinants of health (SDoH) — as by inherited characteristics. Accordingly, medicine has turned for assistance to the law, social work, housing policy, and the like, thus imbuing those systems with medical logic and rationales.

Many of these changes have generated what I call “medical civil rights” that, at a general level, provide benefits to numerous individuals. Advocates rely on the language of medicine to seek rights, protections, and benefits for clients, using a range of state and federal statutes. The push to acknowledge and address social determinants has gained steam, with insurers from Aetna to Medicaid covering certain kinds of housing and even (in the case of Medicaid) employment assistance.

And yet, as this symposium shows, BIPOC are often left behind. Within medical institutions, BIPOC receive worse treatment, experience worse outcomes, and die at higher rates than their white counterparts. Such discrimination is embedded within medical institutions in deep and intersectional ways. In this symposium, Kimani Paul-Emile, for example, shows how lower status workers within medical institutions, such as orderlies and nursing assistants, who are disproportionately BIPOC, are generally an afterthought. In the COVID-19 crisis, such workers have received limited protections and support from the institutions where they work.

Outside traditional medical institutions, race remains an afterthought. As Ruqaiijah Yearby writes, racism, which determines life outcomes, is often left out of enumerated social determinants of health. Both she and Lindsay Wiley make robust cases for including race as such a determinant in this symposium. Wiley, in turn, anticipates and addresses objections to the inclusion of racism as a determinant. Indeed, blindness towards race colors which determinants SDoH scholars focus upon. For example, until a few years ago, policing, which disproportionately affects BIPOC, was not a major area of study for SDoH scholarship. Keon Gilbert’s contribution shows those links.

Indeed, invoking medical frames can often counteract the ability of BIPOC to invoke SDoH discourse. Genetic understandings of self can extend to genetic understandings of others. And, as Dorothy Roberts’s pioneering work has shown, genetic understandings of race revive old and dangerous chestnuts about race’s biological situatedness. For example, in the COVID-19 crisis, as Colleen Campbell’s contribution to this symposium shows, vaccination debates have fixated on notions of genetic and biological difference between race. This, in turn, shifts focus away from the gross social disparities that far better explain the dismal health outcomes among BIPOC during the pandemic.

BIPOC are thus in a no person’s land — generally left unprotected, and often, actively persecuted — by both law and the health care system. Michele Goodwin’s contribution to this symposium poignantly exposes that intersection, describing how, instead of attending to a patient who relied on an oxygen mask to breathe, medical personnel called a police officer whom they helped to disconnect the patient from her mask. Legal prejudice was backed by medical prejudice. Collaboration between these institutions resulted in the death of the patient.

Law and medicine thus interlink to create a robust power discourse that continues to enmesh BIPOC within systems of oppression they have long endured. But is there hope? Just as activists, advocates, and scholars have fought for — in certain times, contexts, and places, successfully — the liberatory potential of law, it may be possible to agitate so that the power discourse of law/medicine can be redirected into creating equity. We continue to explore those themes in future installments of this symposium.

 

This post will be updated with links to the symposium contributions as they are published.

Craig Konnoth is an Associate Professor of Law and Director of the Health Law Certificate Program at the University of Colorado Law School. Konnoth is the guest editor of Understanding the Role of Race in Health, a Bill of Health digital symposium.

The post Understanding the Role of Race in Health: A New Digital Symposium appeared first on Bill of Health.

09/16/2020 - 7:00am

By Sebastián Soto

Chile is heading into a constitutional change.

After 40 years, the Chilean 1980 Constitution, enacted under Pinochet’s rule, but subsequently amended over fifty times, will probably be replaced. On October 25th, a referendum will decide whether or not to call a constitutional convention to change the Constitution.

If the referendum passes, in April 2021 the convention will be called and will have nine months (extendable for three more, if needed) to write a new constitution. If the convention reaches an agreement on a new constitution by 2/3 of its members, a new referendum to approve it will be called during the first semester of 2022.

Social rights are expected to be one of the most contested topics discussed during the process.

The current Constitution recognizes the most common social rights as the right to education, the protection of health, the right to social security, and the protection of the freedom to work.

However, there are several criticisms regarding the specific constitutional clauses which recognize these rights. First, they are not justiciable, which means that people cannot make applications to courts for relief if their social rights are violated. Second, some have argued that the constitutional recognition of these rights does not give enough power to the state to ensure their satisfaction. A final criticism states that the constitutional clauses are “too thin” and lack the depth needed to guide policies protecting these rights.

Apparently, the discussion will follow the Latin American trend regarding social rights. And this is not good news. If we focus on the right to health, we can see that South American constitutions are extremely “thick” and aspirational.

For example, consider some of the newest constitutions in the region: the Constitution of Colombia (1991) addresses the issue in 307 words; Brazil’s constitution (1988), in 565 words; and Ecuador’s (2008), the longest, in 1225 words. Several topics are regulated, or at least mentioned, in health care clauses: the aim of health, the role of government and private sector, funding, community participation, access, sanctions, the existence of a single health system, guiding principles (as “solidarity, efficiency and co-responsibility” in Bolivian constitution), maternal healthcare services, indigenous health care, among others.

What should Chile do? In my opinion, following this trend is not advisable. Constitutions, as Cass Sunstein wrote almost twenty years ago, “are pragmatic instruments, not outlines of a just society, and hence there is a gap between what constitutions say and what justice requires.”

I think we Chileans, as well as the international community, should hear this call when thinking about our process. A long and dense enumeration of social rights, common in Latin American constitutions, would create high expectations, which could injure the credibility of the new constitution. It would transform those rights, not in the sense of Dworkin’s “rights as trumps,” but as mere aspirations. This trend eclipses and leaves behind what is really important to improve our wellbeing: good policies and political consensus to make important changes.

The right to health in the current Chilean Constitution could be a good example. The clause is relatively thin (no more than 100 words) and it is not justiciable. It states the right to protection of health, the state’s duty to ensure the implementation of health-related actions, and the existence and coordination of both a state-owned and private system, among other specific regulations. Many have called to write a longer clause to insure the improvement of health and reinforce state capacity.

Nobody can deny that our health system needs urgent reforms. Although it is rated highly in comparison with others in the region, it is still far from being acceptable, especially for the poorest. But these problems are closer to policies than to constitutional provisions. Constitutions must leave room for politics and policies to do their job.

We cannot forget another important feature of Chilean constitutionalism. As with most constitutions in the world, the Chilean Constitution is a living constitution; we have neither an originalist nor a textualist interpretation. The interpretation of our enumerated individual and social rights evolves in connection with our own constitutional development, international human rights law, and global constitutionalism.

The right to health is, again, a good example. Although it is not justiciable, courts have invoked the right to life and physical integrity to spread protection to health. Under this interpretation, several decisions of the Supreme Court have required public funding of expensive medical treatments, or have limited the freedom of the private sector to raise the cost of health programs. These decisions show an evolution in constitutional interpretation that is common not only in health protection, but also in other rights.

The Chilean constitutional moment is in its very first steps. The following years will be crucial to building our next decades. We must not forget that the current constitution, undoubtedly, has granted the best thirty years in the history of our country from a political, social, and economic perspective. Whether the new constitution can improve this record depends, on some important level, in the capacity we have to look at the constitution as a pragmatic instrument to progress and political stability.

 

Sebastián Soto is a constitutional law professor at Universidad Catolica de Chile and the Director of the Public Law Department at the Law School. He is a former visiting scholar at the David Rockefeller Center for Latin American Studies, Harvard University.

The post Pragmatism and the Chilean Constitutional Moment appeared first on Bill of Health.

09/16/2020 - 2:00am

Newly available on Netflix is ​​“Cryogenization: Live Twice.” 

09/15/2020 - 3:30pm

By Roberto Gargarella

From the first time that I wrote about the COVID-19 situation in Argentina, June 8, until the date I am writing this, September 7, things have changed significantly.

First, the number of people who have died of COVID-19 in Argentina has risen to nearly 10,000; the 16th highest death toll in the world. The total number of cases is 500,000; which places Argentina among the top 10 countries for infections worldwide.

These alarming statistics are particularly worrying in Argentina, given a number of additional facts mentioned in my original blog.

First, the high number of deaths and infections, which is not unusual worldwide, contrasts with a highly unusual and exceptional quarantine, for its strictness and length. As of today, the country has imposed almost 6 months — 170 days — of strict quarantine, which makes it one of the most prolonged in the world.

The contrast between the extremely extended quarantine and the poor results in containing COVID-19 prompt reflection on some of the problems in the administration of the crisis.

First, these poor results stem in part from the fact that after months of strict confinement, the population began to disobey the lockdown, and evaded the established restrictions in various ways.

As I understand it, that attitude of popular rebellion, after enormous initial social support for the crisis measures, had to do with the recognition that the government’s initiatives were beginning to show themselves as poorly executed or ill-conceived.

According to the consulting firm Poliarquía, in April of this year, President Alberto Fernández had an approval rating of 84% and a disapproval rating of 9% for his handling of the crisis. He was praised, above all, for his decisive and early response to COVID-19.

But, since then, the approval and disapproval ratings have grown closer together, and are now only 14 points apart — 53% approval and 39% disapproval.

Today, the inertia and insistence on a single response — the clumsily managed and extreme confinement — is criticized even on the grounds of its initial justification to prepare the health system for the pandemic. That justification is no longer understood as that initial strict response was not accompanied by such measures as contact tracing, identification of cases, and follow-up.

As I understand it, these growing problems are driven by one overarching institutional factor, which I pointed out in my initial text: a constitutionally unsustainable procedure for decision-making, which has grown increasingly concentrated and elite: the President and a group he has selected take all manner of decisions in the name of everyone else.

In the beginning, some commentators justified concentrated decision-making in the hands of the executive due to the emergency and the perceived impossibility of having Congress take action. But today it has been months since the legislative branch has resumed its functions, which further undermines the constitutionality of the measures that the executive branch has ordered.

The executive “discretion,” which is being reinforced with this government during the perfect excuse of the pandemic, has been illustrated recently by two key examples, one more serious than the other.

First, there was the sudden attempt at expropriation of the agroindustrial group Vicentin SAIC by the President in an arbitrary and capricious fashion with no formal process. This was a surprising initiative that the President found himself obligated to abandon without any good explanation for what his intention was in the first place.

Second, the President has just recently begun a process for judicial reform, which most people consider to be designed fundamentally to ensure the impunity of the Vice President, Cristina Fernández de Kirchner (unrelated to the President), who is facing a number of corruption charges.

Although the judicial reform requires a much more extensive reflection than this space allows, briefly I will say that in comparative terms, this Presidential initiative is both surprising and difficult to justify: Why begin a contentious reform process like this, with huge economic cost implications, amid an emergency that precludes public discussion, and at a time when the country’s economy is severely suffering because of the crisis?

In short, the concerns raised in my initial piece on the rule of law in Argentina have only grown stronger based on what the government has done in the intervening months.

Roberto Gargarella is Professor at the University of Buenos Aires and the University Torcuato di Tella and Senior Researcher at the National Research Council, CONICET.

The post Concerns Mount About Rule of Law in Argentina During COVID-19 appeared first on Bill of Health.