Dr. Cabrera and team published in ‘Neurosurgical Focus’

Laura Cabrera photoCenter Assistant Professor Dr. Laura Cabrera and co-authors Hayden M. K. Boyce, MD, Rachel McKenzie, and Robyn Bluhm, PhD, have an article in the August 2018 issue of Neurosurgical Focus. “Conflicts of interest and industry professional relationships in psychiatric neurosurgery: a comparative literature review” stems from the authors’ Science and Society at State (S3) project, “Psychiatric Interventions: Values and Public Attitudes.”

Abstract: Objective: The research required to establish that psychiatric treatments are effective often depends on collaboration between academic clinical researchers and industry. Some of the goals of clinical practice and those of commercial developers of psychiatric therapies overlap, such as developing safe and effective treatments. However, there might also be incompatible goals; physicians aim to provide the best care they can to their patients, whereas the medical industry ultimately aims to develop therapies that are commercially successful. In some cases, however, clinical research may be aiming both at improved patient care and commercial success. It is in these cases that a conflict of interest (COI) arises. The goal of this study was to identify differences and commonalities regarding COIs between 2 kinds of somatic psychiatric interventions: pharmacological and neurosurgical.

The full text is available online via Journal of Neurosurgery (MSU Library or other institutional access may be required to view this article).

To learn more about this study, listen to Laura Cabrera, Robyn Bluhm, and Rachel McKenzie on the Center’s podcast, No Easy Answers in Bioethics: Public Perception of Psychiatric Interventions: Cabrera, Bluhm, and McKenzie – Episode 5.

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Dr. Stahl presents at International Academy for Bioethical Inquiry

Devan Stahl photoOn July 16, Center Assistant Professor Dr. Devan Stahl presented “Ethics Beyond Autonomy: The Case of Snapchat Surgeons” at the International Academy for Bioethical Inquiry (IABI) Summer Symposium, held at Saint Louis University. Based on her recent publication in AMA Journal of Ethics, Dr. Stahl discussed the rise in vaginal cosmetic surgery performed on the social media platform Snapchat and its implications for our cultural conceptions of ‘normal genital appearance.’ Dr. Tobias Winright offered a response to the paper, which was then thoroughly discussed by the conference attendees.

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Patient dumping: why are patients disposable?

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Karen Kelly-Blake, PhD

A public uproar ensued when a video revealed hospital staff literally dumping a woman wearing only a gown and socks in frigid weather on the streets of Baltimore. Imamu Baraka, a psychotherapist, witnessed the incident and recorded it on his cellphone. In the video, we see Mr. Baraka questioning the security personnel about their activity, and then we see them silently walking away.

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Image description: a crumpled hospital gown is pictured on the edge of a concrete ledge. The background is a concrete sidewalk. Image source: Lynn Park/Flickr Creative Commons.

The fact that the public appeared to be surprised by this event was bewildering. Patient dumping is hardly a new phenomenon, and in fact, it should not come as a surprise that those being dumped in this fashion are predominately non-white, poor, homeless, mentally ill, uninsured, and drug users. So, what is patient dumping? It is when hospitals that are capable of providing necessary medical care fail to screen, treat, or appropriately transfer a patient, or alternatively, when they turn the patient away because of the patient’s inability to pay for services.

Hospitals have long relied on this tactic as a way to offset care for those patients who cannot cover their costs, and so the hospital then is not reimbursed—it is an economic profit-loss decision. But, this blog is not about blaming hospitals. It is about recognizing that patient dumping is a symptom of larger healthcare system and societal ills. Consider the following:

Thirty million people in the U.S. remain uninsured after Affordable Care Act (ACA) implementation. Forty million adults experience mental illness in a given year. 554,000 people in the U.S. are homeless. Forty-three million live in poverty. Every day, the opioid epidemic claims 175 lives. These many data points speak to the U.S.’ combined lack of healthcare and social safety nets. Filling those gaps alone could potentially avert patient dumping.

By default, public, not-for-profit hospitals are charged with caring for such vulnerable patients. In the era of value-based, pay-for-performance, and accountable care organization (ACO) reimbursement models, those hospitals consequently will struggle to meet Centers for Medicare & Medicaid Services quality care metrics.

Federal legislation such as the Hill-Burton Act and later the Emergency Medical Treatment and Labor Act (EMTALA) were instituted to address legal and ethical concerns about patient dumping. Signed in 1946 by President Truman, Hill-Burton directed hospitals to make services available to anyone living in the geographic region of the hospital and to provide care free of charge to those individuals unable to pay. Signed in 1986 by President Reagan, EMTALA was enacted to protect all individuals seeking treatment at Medicare-participating hospital emergency departments. In addition to federal statutes, states also have passed legislation requiring hospitals to provide care irrespective of ability to pay and require that patients be medically stable before transfer. Regrettably, federal and state laws have not performed as was intended. Statutes designed to prevent patient dumping are criticized for 1) having narrow and unclear definitions of what constitutes a medical emergency; 2) failing to clarify what it means to stabilize patients before a transfer; and 3) failing to adequately provide the means for monitoring and enforcement (Ansell & Schiff, 1987).

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Image description: An aerial photo of a medical waiting area shows rows of blue chairs, and three seated individuals dispersed throughout. Image source: Erwin Morales/Flickr Creative Commons.

It would seem that patient dumping is symptomatic of larger macroeconomic and macrosocial issues. What possible solutions exist?

Suppose we actually provided health care to everyone? The ACA has greatly expanded insurance coverage by extending Medicaid, but many people remain uninsured due to prohibitive costs. Imagine having access to health insurance that was not employment dependent. Imagine that people with mild, moderate, and severe mental illness received comprehensive health services. Imagine a system of care that recognized that social determinants of health profoundly influence health outcomes. Imagine having food assistance folded in as part of a medical treatment.

Suppose we eradicated poverty and homelessness? Imagine a time when people could actually support themselves and their families because they made a living wage. Imagine that support was available for people to simultaneously work and pay for childcare.

Suppose we actually utilized comprehensive discharge planning for patients? Imagine planning documents that were easy to read and comprehend because health literacy was important. Imagine patients understanding the medications they needed to take when they got home. Imagine that prior to discharge patients had appointments scheduled for follow-up visits and had the transportation in place to get them there. Imagine providing support visits for elderly patients to make sure they were living in decreased fall risk environments.

Suppose we made the profession of medicine responsible for caring for our most vulnerable—the sickest sick and poorest poor? Imagine that all provider-patient panels included a significant number of homeless, poor, mentally ill, and uninsured individuals. Imagine an equal, fair, and just distribution of medical care service to the underserved that lightened that specific expectation on under-represented minority physicians (URMs). We know that URM physicians bear a disproportionate burden of providing care for the most vulnerable patients. Such a burden might substantially constrain their ability to meet quality care metrics for reimbursement.

Patient dumping is a harsh, cruel response to a healthcare and social system that can also be harsh and cruel. The goal for the U.S. healthcare system is to “ensure that every patient is a wanted patient regardless of ability to pay”.

Incidents of patient dumping such as the one recorded in Baltimore should not be cause for public consternation. The public protestation should instead be about macro-level systems and social ills that make such responses unsurprising. The above suppositions are probably wild-eyed idealist notions. But for a moment, just suppose they weren’t?

Karen Kelly-Blake photoKaren Kelly-Blake, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, August 9, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

More Bioethics in the News from Dr. Kelly-Blake: Incarcerated AND Sick: At Risk for Pain, Injury, and DeathWhite Horse, White Faces: The Decriminalization of Heroin AddictionRacism and the Public’s Health: Whose Lives Matter?Concussion in the NFL: A Case for Shared Decision-Making?

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Drs. Eijkholt and Fleck present at International Bioethics Retreat in Paris

Marleen Eijkholt photoLeonard Fleck photoCenter Professor Len Fleck and Marleen Eijkholt, former Assistant Professor with the Center, recently presented at the 2018 International Bioethics Retreat, held in Paris, France on June 27-29. The conference has been sponsored by Cambridge University for the past eighteen years.

Dr. Fleck presented on “Personalized Medicine? Precision Medicine? What is Just Enough?” He addressed a question raised by Warwick Heale in an article in the Journal of Medical Ethics.

Heale was writing about the use of a quality-adjusted life year (QALY) cost-effectiveness methodology to make allocation decisions in health care. Heale identifies himself as a utilitarian. He generally wants to obtain the most medical good for a population group at the lowest cost. However, Heale notes that the use of this methodology is about averages for a population group. He wants to argue that if a population group cannot be treated cost-effectively with some very costly cancer drug, then it would be unjust to deny that drug to any individuals in that group whom we could identify before the fact who would benefit very significantly and cost-effectively from that drug. This has a certain intuitive moral reasonableness about it.

However, Fleck argued Heale’s proposal has some morally problematic aspects as well. He asked his audience to consider Laurel and Hardy. Both have the same medical problem; both would benefit from access to a certain costly drug. The quantity of the drug is administered on the basis of weight. It is clear that the drug is cost-effective for the average 70 kilogram person. Laurel weighs 57 kilograms. The drug is even more cost-effective for him. But Hardy weighs 90 kilograms; the drug would not be cost-effective if given to him. The logic of Heale’s position would require denying the drug to Hardy. This would strike most physicians (as well as most patients) as clearly unjust, especially if we were talking about a drug that was not absolutely scarce.

Heale wrote this paper to suggest a better approach to allocating money from the UK Conservative government’s Cancer Drug Fund, which was mostly without ethical moorings for several years. However, Fleck concluded that Heale’s proposal might effectively address the economic challenges faced by the Cancer Drug Fund while adding to the moral challenges intrinsic to the creation of the fund in the first place.

Dr. Eijkholt spoke on “Medicine’s Collusion with False Hope: False Hope Harm.” She proposed a new argument to think about interventions that are offered for consumer demands rather than for medical reasons: i.e. the False Hope Harm. She proposed that hope serves important functions in medicine. Hope can be “therapeutic” and important for patients to “self-identity as active agents.” However, in consumer medicine, like in much of the U.S. health care context, hope could also take on a different role. Scenarios like Jahi McMath and Charlie Gard make us wonder if hope can be harmful too. In fields like stem cell medicine or cancer treatment, where providers justify their support for medical interventions with “it will make them feel better,” we can also identify the risk of such harm. While one might argue that we should not deny anyone such hope in the face of emotionally vivid stories, Dr. Eijkholt argued that the profession has an obligation to avoid false hope harms.

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Drs. Eijkholt and Stahl present at International Conference on Clinical Ethics Consultation

Marleen Eijkholt photoDevan Stahl photoCenter faculty members Marleen Eijkholt and Devan Stahl attended and presented at the 14th International Conference on Clinical Ethics Consultation (ICCEC), held June 21-23 in Oxford, England.

Dr. Eijkholt presented as part of a collaborative panel on “Helpfulness in Clinical Ethics Consultation Notes,” which also included Dr. Stahl, Dr. Stella Reiter-Theil, and Dr. Jugen Wallner, who are respectively from Germany and Switzerland. Dr. Eijkholt presented her paper, “An Empirical View on Helpfulness in Clinical Ethics Consultation Notes,” which outlined the data that she had gathered from analyzing case consultation notes from fellow clinical ethicists. She explored the questions: What made their notes helpful? How should clinical ethics consultation (CEC) chart notes be formulated to be most helpful, while being mindful about professional boundaries, and being mindful about the recipients of these notes, i.e. vulnerable health care providers who are not necessarily philosophers? While medical providers are used to reading notes from their fellow consultants in the form of conclusions–such as, “patient is in kidney failure,” “palliative care recommends x dosages of morphine”–ethics consultants hardly ever find themselves faced with a clinical scenario that allows for such “simple” conclusions. Moreover, such authoritarian conclusions are undesirable according to the framework of the clinical ethics profession. CEC recommendations therefore take a different format. After analyzing several notes, Dr. Eijkholt concluded with an acknowledgement of the tension between quality and helpfulness.

Dr. Stahl presented on the panel “Is there a place for clinical ethics consultation outside of the hospital setting?” alongside Kevin Dirksen, Tyler Gibb, and James Hynds. The group discussed models for doing outpatient clinical ethics consultation at their respective hospital settings. Dr. Stahl presented on new efforts here in East Lansing to bridge the inpatient and outpatient settings using ethics consultation handoffs.

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Worried about your privacy? Your genome isn’t the biggest threat.

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Tom Tomlinson, PhD

It was good news to learn last month that the “Golden State Killer” had at last been identified and apprehended. A very evil man gets what he deserves, and his victims and their families get some justice.

The story of how he was found, however, raised concerns in some quarters. The police had a good DNA sample from the crime scenes, which with other evidence supported the conclusion that the crimes were committed by the same person. But whose DNA was that? Answering that question took some clever detective work. Police uploaded the DNA files to a public genealogy website, GEDmatch, which soon reported other users of GEDmatch who were probably related to the killer. More ordinary police work did the rest.

Most of the concern was over the fact that the police submitted the DNA under a pseudonym, in order to make investigative use of a database whose members had signed up and provided their DNA only for genealogical purposes.

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Image description: a black and white photo of the panopticon inside of Kilmainham Gaol in Dublin, Ireland. Image source: Craig Sefton/Flickr Creative Commons.

My interest in this story, however, is the way it both feeds and undermines a common narrative about our DNA—that it is uniquely identifying, and that therefore any uses of our DNA pose special threats to our privacy. As The New York Times expressed this idea, “it is beginning to dawn on consumers that even their most intimate digital data—their genetic profiles—may be passed around in ways they never intended.”

It’s true that a sample of DNA belongs uniquely to a particular individual. But the same is true of a fingerprint, a Social Security number, or an iris. More importantly, by themselves none of these pieces of information reveals who that unique individual is.

As the Golden State Killer story illustrates, it’s only when put in the context of other information that any of these admittedly unique markers becomes identifying. If the GEDmatch database contained nothing but genetic profiles, you could determine which genomes the killer was related to. But you’d have no idea who those genomes belonged to, and you’d be no closer to finding the killer.

Although an individual genome can’t by itself be identifying, it can provide a link that ties together different information sources which include that genome. It can then be that collection that points to an individual, or narrows the list of possibilities to increase the odds of identification, and the threats to privacy. Imagine the state police maintains a database of forensic DNA linked to records of criminal convictions, and provides that database to criminologists, stripped of any names or other direct identifiers. Imagine as well that one of the hospitals provides researchers with DNA from their patients along with their de-identified medical records (which can include patients’ age, race, first 3 ZIP numbers, and other demographic information).

If we put those together we can do some interesting research: use the DNA link to identify those who both committed various crimes and had a psychiatric history, so we can compare them to convicted felons without a psychiatric history.

But now it may take very little additional information to identify someone in that combined database and invade their privacy. If I’m a researcher (or hacker) who knows that my 56-year-old neighbor was convicted of assault, I can now also find out whether he has a record of psychiatric illness—and a lot more besides. What he had thought private, is no longer so.

The point of this somewhat fanciful example is that as more information is collected about us, from more sources, the threats to our privacy will increase, even if what’s contained in individual sources offers little or no chance of identification.

For this reason, the prospect of merging various data sources for “big data” health research will challenge the current research regulatory framework. Under both the current and the new rules (which haven’t yet gone into effect), the distinction between identifiable and non-identifiable research subjects is critical. Research using information that can be linked to an individual’s identity requires that person’s consent. To avoid this requirement, research data must be “de-identified”. De-identification is the regulatory backbone on which much of the current “big data” research relies, allowing the appropriation of patient medical records and specimens for use in research without consent; and it provides the regulatory basis for uploading the data collected in NIH-supported research into a large NIH-sponsored database, the database of Genotypes and Phenotypes (dbGaP), which most NIH-supported genomic studies are required to do. Data from dbGaP can then be used by other researchers to address other research questions.

The possibilities of merging such “de-identified” databases together for research purposes will only increase, including facial recognition databases being collected online and on the street. As the mergers increase, it will become more difficult to claim that the people represented in those databases remain non-identifiable. As Lynch and Meyer point out in the Hastings Center Report, at this point there will be two choices. We can require that all such research will need at least broad consent, which will have to be reaffirmed every time a person’s data is used in new contexts that make identification possible. Or we will have to fundamentally reassess whether privacy can play any role at all in our research ethics, as the very idea of “privacy” evaporates in the panopticon of everyday surveillance.

Tom Tomlinson photoTom Tomlinson, PhD, is Director and Professor in the Center for Ethics and Humanities in the Life Sciences in the College of Human Medicine, and Professor in the Department of Philosophy at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 12, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Article from Dr. Stahl in ‘AJOB Neuroscience’

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl and co-author John Banja (Emory University) have a target article in the current issue of AJOB Neuroscience, titled “The Persisting Problem of Precedent Autonomy Among Persons in a Minimally Conscious State: The Limitations of Philosophical Analysis and Clinical Assessment.”

Abstract: Determining whether it is ethical to withdraw life-sustaining treatments (WOLST) from a patient in the minimally conscious state (MCS) recalls recurring debates in bioethics, including the applicability of precedent autonomy and the usefulness of quality-of-life assessments. This article reviews the new clinical understanding of MCS and the complexities involved in detecting covert awareness in patients. Given the diagnostic and prognostic uncertainty surrounding most MCS determinations, we review the ongoing debates concerning precedent autonomy as they apply to making WOLST determinations for patients in MCS. We also consider the moral obligations clinicians might have to understand an MCS patient’s advance directives, current preferences, and quality of life. We argue that an optimal approach for making WOLST determinations requires weighing patients’ previous wishes against their current circumstances but that even here, factual as well as ethical vagaries and disagreements will be relatively commonplace.

The full text is available online via Taylor & Francis Online (MSU Library or other institutional access may be required to view these articles).

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