Tag: autonomy

Human Microchip Implantation: A Bridge Too Far?

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

By Sabrina Ford, PhD

Technology. It invades every corner of our lives and for the most part improves the quality of life. From typing on a flat panel with a little TV screen attached, to a smartphone enabling users to share with others collected data that lives in the cloud. A CT/X-ray image of a C2 spinal fracture (aka Hangman’s Fracture) taken in the middle of the night at a small Midwestern rural hospital is sent to a West Coast spine surgeon, and within minutes, an expert opinion is returned to that rural hospital. Technology is convenient, pervasive, and unavoidable.

In the past 15 years, discussion and related controversy has taken place about a Radio Frequency Identification Device (RFID) or microchip that can be implanted in human bodies. That chip would contain, store, and update data about us. Might such an implant be a benefit or a risk? Some investors are betting on its appeal. The compound annual growth rate (CAGR) from 2020-2027 of the healthcare microchip is expected to grow by 22% and be valued over $6.4 million by 2027. RFID microchips (herein referred to as microchips) are already used for many things from your credit/debit card, to those efficient logistics used to move your Amazon package.

Illustrated cyborg eye with electronic circuits
Image description: An illustrated cyborg eye with electronic circuits. Image source: jemastock/Vecteezy.

Getting to the bridge

Implanted microchips are a terrifying idea to some of us—sufficiently frightening to harken images of robots and androids—the stuff of science fiction. For some of us, implanting something foreign in our bodies for the management of big data and convenience is disturbing. Another concern might be the potential breach of privacy and the surveillance of our daily life. If the chip contains medical, personal, social information, and GPS data, could we lose all autonomy? Do we maintain our autonomy if, with sufficient information, we consent to the decision? What will all the information be used or misused for? What if our employer, insurer, or a government entity decides to check on us?

These questions raise other concerns about autonomy. Enough employers considered compulsory microchips for their employees that in 2020, Michigan and several other states introduced and passed bills designed to prevent employers from forcing employees to accept microchip implants. This pre-emptive strike was against a growing technology, utilized perhaps to track safety, productivity and movement. As with many things in the United States, some vulnerable employees with microchips might be targeted, either unintentionally or intentionally, thereby putting them at further economic and social disadvantage.

Some have already crossed the bridge

It is estimated that currently approximately 10,000 people in the world have implanted microchips. Perhaps that doesn’t sound like many, but if investors are hedging their bets correctly, the technology is on its way to widespread adoption. A large number of those “cyborgs” reside in Sweden and employ the technology not for health care reasons, but instead use microchip implants to unlock their car doors, buy a coffee, or swipe into the gym. That rate of chip adoption makes sense in a society like Sweden, which is the second most cashless society (after Canada) in the world.

Photo of microchip being held between two fingers
Image description: A photo of an RFID implant held between two fingers. Image source: Dan Lane/Flickr Creative Commons.

Many argue that an RFID tag and implanted microchips can increase cybersecurity. Not being able to log into your computer without first swiping into the building and into your office door might offer a level of comforting protection against physical hacking in the workplace. In addition, many in healthcare delivery believe medical mistakes would be greatly reduced and quality of care increased if our medical charts were loaded on microchips, monitoring disease states like heart disease and diabetes, improving management of medications, and reducing surgical mistakes. If, with microchips, first responders or doctors had real-time access to accurate medical information there is potential to save lives in medical emergencies. The HITECH Act—or Health Information Technology for Economic and Clinical Health Act—calls for the interoperability of electronic health information for privacy and safety of the patient. As it is now, it doesn’t make sense for an individual to have different electronic health records in a number of physician offices. If our world were to be efficiently hyperconnected, one can argue that everyday life could be improved and streamlined.

A bridge too far

But would it be? We are covered, watched, followed, and violated through our digital footprint on a daily basis. Perhaps not necessarily with microchips, but pause to consider your actions today. You took your morning walk as public cameras captured your movement down the block, into the convenience store for a cup of coffee, where you used your debit card or smartphone to pay for the transaction, and that transaction was caught on the store camera. You then check your fitness wearable for heart rate, steps, route, and all that other good stuff. Later, you swipe in and out of the building as you stop into your office for a few hours, in and out of several doors, and log on to your computer—accessing various applications in the cloud—all the while answering your email and checking your calendar. Later in the day, you visit your doctor, either in person or via telemedicine, and she enters your ailments, diagnostic tests ordered, and electronic prescriptions into the electronic health record. As you wind down for the evening you make your market list in your favorite grocery store app, use your smart television to access your favorite shows, and access your books on a reading app. All of this is accomplished in the cloud, and on the “grid” in huge databases. Is this trek through the digital world so much different than a microchip that holds your digital footprint? You’ve left a day’s breadcrumb trail on almost every aspect of your life, and not even as consciously as Hansel and Gretel. As for implants in general, clearly Americans accept them, as witnessed by artificial joints, IUDs, cochlear implants – and don’t forget about those implants for hair and breasts.

Over the bridge

The described dilemma is that implanting a chip has the potential to be a violation of rights, yet the chip might equally offer safety and convenience. The implantable microchip is not fully developed and has a long way to go, but the technology is on its way. Microchips today are not sufficiently powerful to collect and communicate big data or to follow us all over the world the way our smartphones do. As with most technologies, the tipping point for implantable chips will come when they become so very useful that they’re simply hard to refuse.

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Sabrina Ford, PhD, is an Associate Professor in the Department of Obstetrics, Gynecology and Reproductive Biology and the Institute for Health Policy in the Michigan State University College of Human Medicine. Dr. Ford is also adjunct faculty with the Center for Ethics and Humanities in the Life Sciences.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, March 16, 2021. 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. Ford: COVID-19 Vaccine: “Not throwing away my shot”; Contemplating Fentanyl’s Double Duty

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Center faculty present at 20th annual American Society for Bioethics and Humanities conference

ASBH logo blueCenter faculty members Dr. Len Fleck and Dr. Devan Stahl recently presented at the 20th annual American Society for Bioethics and Humanities (ASBH) conference, held October 18-21 in Anaheim, CA.

Leonard Fleck photoDr. Fleck presented on “Parsimonious Precision Medicine: Wicked Problems.” The phrase “precision medicine” refers to targeted cancer therapies and immunotherapies that are aimed at defeating metastatic cancers with specific genetic signatures. There are more than ninety such FDA approved therapies, all of which have costs of more than $100,000 per year with some costing as much as $475,000 (CAR-T cell therapies). To date, none are curative. On the contrary, for the vast majority of patients gains in life expectancy are measurable in weeks or months, not years. These results suggest that for a just and caring society with limited resources to meet virtually unlimited health care needs, we ought to be more parsimonious in how we use these drugs and who we choose to treat.

The key point of the presentation was that whether we choose to be parsimonious in our use of targeted therapies or not, we will generate what the literature has come to describe as “wicked problems” (ethically, economically, and politically speaking). A “wicked” problem is essentially a problem for which every proposed solution (including doing nothing) generates even more problems that are equally, or more, challenging.

Devan Stahl photo

Dr. Stahl gave two panel presentations at ASBH this year. The first, “Theories of Identity and the Problem of Precedent Autonomy,” explored the ethical tensions that arise when patients in disordered states of consciousness appear to have current preferences that contradict their prior wishes. The panelists, including Dr. John Banja (Emory University) and Dr. Nancy Jecker (University of Washington), discussed the limits of philosophical analysis and theory regarding the status of precedent autonomy.

In her second presentation, Dr. Stahl was joined by Darian Goldin Stahl (Concordia University) and Dr. Jeffrey Bishop (Saint Louis University) to discuss their latest book Imaging and Imagining Illness, which explores the effect of medical imagining on patients and ways medical images can be transformed through art and philosophy.

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).

Episode 4: Comparing Chinese and American Bioethics

No Easy Answers in Bioethics logoEpisode 4 of No Easy Answers in Bioethics is now available! This episode features guests Dr. Guobin Cheng, Adjunct Associate Professor with the Center for Ethics and Associate Professor at Southeast University in China, and Center Director and Professor Dr. Tom Tomlinson. Freshly back in East Lansing from the annual meeting of the American Society for Bioethics and Humanities (ASBH) held in Kansas City, Missouri, they sat down together to discuss differences and similarities observed in American and Chinese bioethics. Based in part on work they presented at the ASBH meeting, they discuss specific case examples as they relate to patient autonomy, family and individual identity, and the patient’s right to know or right not to know diagnosis and prognosis.

Ways to Listen

This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full transcript available.

About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.

The face of Zika: women and privacy in the Zika epidemic

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

By Monica List, DVM, MA

A quick online search for “Zika” reveals two kinds of images, those of vectors and those of victims. Images of Aedes sp. mosquitoes, vectors of the Zika, Dengue, and Chikungunya viruses, dominate the virtual landscape, followed closely by images of infants and children with microcephaly, as well as women; some pregnant, some caring for children with Zika-related congenital conditions. This abundance of images of children and mothers affected by Zika is not surprising, as they are, in fact, the populations most seriously harmed by the virus. There is now enough evidence to infer that prenatal Zika virus infection can cause microcephaly and other brain anomalies in the developing fetus (Rasmussen et al 2016). Embedded in public health communiques and media coverage, these publicly available images are undoubtedly an important part of the narrative of the Zika epidemic; they provide a face and a human dimension to a risk often perceived as distant and abstract by residents of latitudes currently unaffected by the virus. In this sense, the images perform an important role; they humanize, contextualize, and help raise awareness of a serious disease that is expected to continue to spread (CDC, 2016). Regardless of the many ways in which these images can improve our understanding of how Zika is affecting the lives of people worldwide, and may eventually affect ours, we must exercise caution in our use of them. These images are not just representations of bodies, they are instances of a person’s life, and furthermore, often present facets of that life that are considered private to some extent, such as pregnancy and illness.

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Adult, male mosquitoes are inspected by an IAEA technician at the Agency’s Insect Pest Control Laboratory in Seibersdorf, Austria. Image source: Dean Calma / IAEA via Flickr.

While privacy is a central topic in bioethics, the kind of privacy at stake in this case may not fit neatly into bioethical definitions and guidelines. Forms of privacy relevant to bioethics include informational privacy, physical privacy, decisional privacy, proprietary privacy, and relational privacy (Beauchamp and Childress 2013). It is plausible to say that media representations of these mothers and children include most of these forms, but also other aspects that may fall outside of these definitions. A BBC News report on babies born with microcephaly attributed to in-utero Zika infection in Pernambuco, Brazil, not only shares private information such as details on the health and pregnancies of the featured mothers, but also allows us a very close look at their private lives; their homes, bedrooms, and even the intimate suffering caused by disease. Even if subjects have consented to the use of their likenesses and stories, is this an encroachment on privacy, and if so, one that would fall within the purview of bioethics?

In bioethics, discussions of privacy generally focus on situations involving patients or subjects in medical care or research settings. Beyond these settings, safeguards such as Institutional Review Board approval are in place for most other research done in an academic setting or for academic purposes, but the same does not apply to non-academic research, including journalistic investigation. While journalism has its own set of ethical principles and guidelines, these tend to be more flexible regarding notions of privacy; the sharing of information that might be considered private in a healthcare setting is allowed in the media under the freedom of press principles. A common protection available to subjects in both healthcare and media settings is informed consent; in both cases one of the main roles of informed consent is to protect subjects from harm, acting on the principle of respect for autonomy (Beauchamp and Childress, 2013). Considerations of autonomy and harm are central to ethical dilemmas in journalism, but they tend to be open to interpretation, arguably more so than in bioethics (Richards, 2009). Furthermore, this interpretation is influenced by where loyalties lie in each case; for healthcare practitioners and researchers, the patient or subject is the priority, while journalists have a prima facie duty to the public interest (Canadian Association of Journalists, Ethics Advisory Committee, 2014). Another issue with consent in this case is that while consent may change over time, it would be practically impossible to completely remove the availability of images and stories that have already been made public, especially with the growing use of the internet and digital communications. One can assume that even if the content is eventually removed from the digital sphere, the images and stories of these mothers and children can be downloaded, saved, and shared without limit.

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In Recife, Brazil, Minister Teresa Campello talks to residents of Recife, Brazil, as part of a Zika prevention campaign “Dia Nacional de Mobilização Zika Zero.” Image source: Ministério do Desenvolvimento Social e Combate à Fome on Flickr.

In this case, the insufficiency of consent is further complicated by the social location of people being portrayed. Although in theory privacy protections apply equally to all, privacy is a markedly gendered and raced concept. For example, since fertility and reproduction can be said to play a role in a nation’s sustainability, many governments see it as their business to legislate over women’s bodies, dictating if and how women have a right to make autonomous reproductive choices (Holloway, 2011). Notably, the majority of women portrayed by the media coverage of the Zika epidemic are poor women of color; part of the reason is simply due to the geographical location of the epidemic, as well as the fact that poor populations generally have access to less resources to prevent and treat disease. Populations whose medical care is attached to some aspect of identity, for instance age, gender, race, or ethnicity, and whose autonomy is diminished in relation to this identity are considered vulnerable (CIOMS, 2002; Holloway, 2011). In research and medical care, these individuals are subject to protections regulated at the international and national levels. While ethical guidelines in journalism also include special considerations for vulnerable subjects, definitions of vulnerability and how to manage it are often vague, and always weighed against the need to provide a public service (Richards, 2009). Usually, the only protection vulnerable subjects have access to is informed consent, which is of little use if their autonomy is already compromised. We must also consider that vulnerability goes beyond diminished autonomy due to one’s age, gender, or race; it also includes, for example, an increased exposure to social risks that can result in discrimination, loss of opportunity, and even violence. Zika-infected pregnant women portrayed by the media can find themselves under even greater public scrutiny, and may be denied access to options such as elective abortion and participation in research that could potentially help women in similar situations (Harris et al, 2016). But, this should not mean that we cannot access or share information about vulnerable subjects, it just means that as is often the case, consent is not enough, especially when this information is likely to be widely broadcasted.

Given the importance of these stories in shaping a public narrative of the Zika epidemic, and the risk of harming vulnerable subjects, bioethicists should take an active part in laying out guidelines for the sharing of this information. Some aspects to consider in these conversations are cultural assumptions about privacy, our purposes for sharing this information, and whether or not it is contextualized by a broader story—not simply a voyeuristic look into the suffering of others. Additionally, breadth of scope should generally be considered in order to assure that images and stories do not focus on one aspect of a broader problem. A more balanced coverage of the Zika epidemic should also focus on the stories of researchers, government officials, tourists, and others touched in some way by this crisis. Finally, the kinds of information outlets we are using should be of primary concern; information shared on the internet, a generally open and unregulated source, can widely expose intimate aspects of a person’s life, and cause harm beyond what we can imagine.

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 2, 2016. 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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The Challenges of Global Commercial Surrogacy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

Recently, The Guardian has carried a series of articles on the issue of commercial surrogacy. No doubt the recent emphasis stems from high-profile cases in the UK and the U.S., particularly the case of a UK surrogate mother who was ordered to honor her surrogacy agreement with a gay couple after she changed her mind about relinquishing the child (see this article for more details). In her May 9th editorial, Catherine Bennett laments that relational breakdowns in UK informal surrogacy arrangements will only encourage couples to look elsewhere for surrogates, and there are many women in developing countries who are willing to enter into these agreements even when few regulations exist to protect them. Surrogacy brokers can control these vulnerable women and sometimes force them to stay in special housing units where their activities can be monitored continuously until delivery. Keeping the child is socially and financially prohibitive for the women, so the brokers can guarantee the baby is handed over with minimal drama.

Indecision
Image Description: a view of a pregnant person’s bare stomach covered in post-it notes that have names written on them. Source: Flickr Creative Commons.

Even if richer countries like the UK and U.S. harmonized their laws and permitted commercial surrogacy domestically (like some U.S. states already do), arrangements would still sometimes fall apart, and wealthy couples desperate for a child would be drawn to the assurance provided by surrogacy brokers. Making an admittedly ethically inexact analogy with prostitution, Bennett surmises that there may be things, particularly acts that dehumanize and commodify women’s bodies, that no one should be asked to do, even for money. While I sympathize with Bennett’s desire to protect vulnerable women from exploitation, I worry that trying to simply end surrogacy would serve only to drive it underground. After all, prohibiting prostitution certainly hasn’t ended the practice. On the other hand, regulations without a new framework for the practice would ameliorate some of the exploitation endemic in commercial surrogacy but would fail to fundamentally address just what is so problematic about these ventures. However, there may be a middle way. If we want to address the larger moral issue, we have to ask, “What should give us pause about commercial surrogacy in a world where people can accept money for many forms of physical labor often at egregiously low prices?”

To my mind, the dehumanizing and commodifying part of current surrogacy practices in developing countries is not the use of women’s bodies for what might be a distasteful purpose to some but the surrogate’s wholesale exclusion from the relational aspects of pregnancy and birth. Here I call pregnancy and birth inherently relational because they usually result in the founding of a family unit, whatever the unit might look like. To be sure, families are not always founded intentionally or under the best of circumstances, but I would argue that at some level all pregnancies cement relationships and promote family ties. A new child solidifies the understanding that certain adults are now bound together at least through their relationship with the child. And, there is something special about family ties. We help relatives through troubled times, and we remain loyal to family members even when they annoy or disappoint us. The extent of our connections changes with proximity, but we treat even distant relatives with some respect just because they are in our family. Family members aren’t like contractually obligated service providers, and family life is much messier than any commercial venture. Surrogates in developing countries usually remain unrecognized as even extended family members, and this lack of recognition is presented as a desirable outcome by commissioning couples and surrogacy brokers. Commercial surrogacy arrangements where prospective parents possibly supply the raw ingredients, sign a contract, and return for pick-up with the intention never to see the surrogate again require women to do fundamentally relational work without relational support or respect. Effectively, couples are saying, “You’re good enough to carry our child but not welcome as part of our family.” It’s this attitude that is unacceptable. We should be wary when people want to found a family while excluding a significant member from the picture entirely. Not to mention, surrogacy has an impact not just on the involved adults but sooner or later on the child who is deprived of a potentially significant relationship. The worry about commercial surrogacy then shouldn’t be based solely on the physical labor performed or risks undertaken. It should be informed by the inherently relational nature of pregnancy and birth. With the current vision of international surrogacy as a clean, strings-free way to have a child, we need to change how we look at the process. Only then will regulations truly help.

What might surrogacy look like if there were significant efforts to integrate the surrogate into the larger family unit and thereby restore relational ties? Obviously, every surrogacy arrangement would look different, but minimally, there would have to be avenues for the surrogate to remain in contact with the family after delivery. Provisions would likely look similar to those specified in open adoptions. These changes would impact couples seeking surrogacy arrangements, but family life isn’t exclusively about the needs of any two people. The surrogate’s desires and the child’s needs should factor just as heavily into the discussion. Acknowledging the unique and fundamental role surrogates play in families is the only way to insure their wombs are not merely leased for nine months. If children were like products, then such leasing might be acceptable. But, children are family members who deserve positive relationships with as many other family members as possible, and they share an undeniable relationship with their surrogate. After all, if the surrogate had not carried them for nine months and done real work on their behalf, they wouldn’t exist. Founding a family will always have to be like family life itself—messy but rewarding—and that dichotomy is something that rigid commercial contracts can’t easily accommodate. The only way to right the wrong is to realize that when a couple creates a child with a surrogate they are founding a family—one that includes the surrogate herself.

References

hannah-giunta-100Hannah Giunta is a sixth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 4. 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.

The Hunter’s Last Quest: The Idolatry of Autonomy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Ann Mongoven, Ph.D.

The tragic case of a young man’s hunting accident and subsequent death has made national news.  The 32-year old Indiana man’s spine was crushed when he fell out of a tree while deer-hunting. The fall left him paralyzed and likely permanently ventilator-dependent. The day after the accident, with the support of family—including his newlywed pregnant wife—the patient asked to have the breathing tube removed.  His wife attested he had told her previously he would never want to live in a wheelchair.  Physicians honored the request and the man died five hours later, surrounded by loved ones.

Of course the medical team’s decision to support his request for withdrawal of life-sustaining treatment was framed in terms of “respecting autonomy.”  Perhaps some on the medical team felt torn by a perceived classic dilemma between autonomy and beneficence.  Nonetheless, they apparently equated honoring the request with quintessentially American “tough love.” Indeed some bioethicists have spoken of the case as embodying the essence of autonomy, because the patient himself decided. (NBC News; CNN)

But in this case, the appeal to autonomy was nothing short of idolatry. Its worship separated medicine from the ground of its being:  the call to be present to patients and families in the profound identity crisis of serious illness or injury.

The ideal of autonomy diverted attention from the genuine lack of patient autonomy. A day after a shocking accident, patients are in shock–literally and figuratively. Moreover, trauma professionals report that those who have lost functions from sudden injury have the dimmest assessment of their future prospects right after the event. Understandably, they are in deep grief for what has been lost.

Full autonomy consists of two elements, one inner and one external. Inner autonomy is the ability to form an intentional life plan. External autonomy is having the freedom and control to pursue one’s intentional life plan. The terrible fall shattered both for the paralyzed hunter in the short-term. In his shock and grief, he saw only what he could no longer plan to do.  And he needed assistance to do anything. Honoring the request for withdrawal of treatment provided the cruelest illusion of control. It facilitated external autonomy when there was no real inner autonomy. The idolatry, then, was more accurately a genuflection to individual freedom rather than to true autonomy.

Death is irreversible.  Asking to die is not.  A medical version of the precautionary principle argues for time and carefulness before acceding to withdrawal of treatment in such cases, assuming pain and discomfort can be controlled. The precautionary approach generally is standard medical practice. In fact, consistency of desire for withdrawal is one of the factors interpreted as evidence of inner autonomy when patients request removal of life-sustaining treatment. The hunter’s case would be a far different one if he had gotten the best support possible but still desired withdrawal from the ventilator after several weeks, or months.  Delay of decision-making amidst shock and grief can honor genuine autonomy. Good physician-communicators regularly assure their patients that they are taking time to be sure they understand what the patient wants. If the time-press for removal was because it was not clear the patient would remain vent-dependent, that would beg questions of staff intent: remove treatment experienced as overburdensome, or actively assist a suicide?

The medical team’s response violated the precautionary principle, ignored what is known about psycho-social experience of trauma, and mistook external autonomy for the whole of autonomy.  These ethical errors are so large that the question at hand is not: “Should the medical team have prioritized autonomy over medical beneficence?  Rather it is: “What was going on that made them see that as the question?”

In his book, The Patient’s Ordeal, William May criticizes contemporary bioethics’ fascination with dilemmas, as well as its procedural focus on the question of who should decide. In his view, those foci deflect attention from serious “how” questions.  Direly injured patients face the ultimate “how” questions: “How can I go on?  How can I become to some extent a new person—since I can never be who I was before (the hunter, the athlete, etc.)?” The trauma inflicts the most severe form of identity crisis. May thinks the crucial question for those caring for someone in such extreme identity crisis is: “how can I support him to go on, becoming in some ways a new person?”

May’s book resulted from his anthropological field studies in trauma units.  In anthropology he finds clues as to how, indeed, caregivers can support. Drawing on analyses of rites of passage, May argues the trauma patient is in liminal period, betwixt and between the old life to which he cannot return and some new life. Religious and cultural traditions around the world have responded to the psychological perils of liminal periods by developing rites of passage. Rites of passage escort people from childhood to adulthood, singlehood to marriage, death to the beyond. These rituals have a common structure: they symbolically recognize the current social separation of the subject; they provide the subject with special counsel from wise elders who have gone through the same perilous passage; and they re-aggregate the subject into society in a new role. According to May, the first response to patients in dire situations like the fallen hunter should be to recognize the fundamental crisis is an identity crisis. Then, caregivers need to orchestrate supportive rites of passage.

What that means can be humbling to modern medicine. The wise elders here are not those with white coats. Rather, they are those who have gone through the same perilous passage.  Were the hunter and his family put in touch with others who had faced sudden paralysis? Such efforts shouldn’t be manipulative. He needn’t be exhorted with comparisons to Christopher Reeve—it would be unfair to expect all to be superman.  Real elders available to talk to him and his family might still struggle with questions about whether their life is worth living. But they show that it is possible to form new lives, whose worth can be questioned with real perspective.

Acknowledgement of the patient’s identity crisis is also humbling to modern medicine because it has no quick fix. No technologically racy procedure or new drug can assist. There is only the long haul of listening, of articulating back the realization that life indeed will never be the same, of adjusting palliation and referring to the various support services that can help– slowly over time– to shape a newly imagined life. The idolatry of autonomy is tempting because acceding to the first request for withdrawal is easier than all that. It may also be easier, initially, for some families who are grieving the death of the one they knew. They too are in a liminal period.  They too need ritual escort through their passage, so that they can affirm their role in the decision-making years, not only days, after the trauma.

What would have happened if the hunter and his family had been responded to as people in profound identity crisis, instead of as people sure of whom they are? We don’t know. Maybe a new, and ultimately embraced life, would have been shaped.  Or maybe, over time a true dilemma between autonomy and beneficence would have emerged, as the patient continued to insist he saw no future and desired removal from life-sustaining treatment. But it was the idolatry of autonomy to perceive the case as starting there.

References:

Almasy S, Martinez M. Paralyzed after falling from tree, hunter and dad-to-be opts to end life. CNN US. November 7, 2013. Retrieved from http://www.cnn.com/2013/11/06/us/paralyzed-indiana-deer-hunter-ends-life

May W. The Patient’s Ordeal. Reprint ed: Indiana University Press; 1991

O’Malley J. Indiana hunter paralyzed in fall chooses to end life support. NBC News Health. November 5, 2013. Retrieved from http://www.nbcnews.com/health/indiana-hunter-paralyzed-fall-chooses-end-life-support-8C11535734 


mongovenAnn Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences 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 Monday, December 16, 2013. 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.

Racism and the Margins of Respect for Autonomy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Doug Olsen, PhD, RN

The recent allegation that a father at a Michigan hospital requested and was granted a change of nurse for his newborn son, based on the assigned nurse’s race, has created a stir in the professional and national public media (Articles in USA Today, Washington Post, Lansing State Journal, and reports on MSNBC.) The initial gut reaction has been overwhelmingly negative, to the point of horror, that the hospital would accede to such a request. The strong reaction seems related to the accusation that the father’s request arose from hateful racism; he is alleged to have brandished a swastika tattoo while making the request.

This initial reaction is understandable, and ethical analysis must account for these concerns. The values of diversity, inclusiveness, fair access to work, and the elimination of inappropriate bias in distribution of care are essential to ethical healthcare.

However, the overall situation of patients requesting clinicians based on personal characteristics is more complex than this initial reaction indicates, because in addition to the values leading to outrage, our professional values also include allowing and encouraging autonomy of patient choice in the goals of treatment and the method of service delivery, and also maximizing the ethical therapeutic clinician-patient relationship. Better clinician-patient relationships are more trusting, have greater mutual respect, better communication, and have more clinician empathy and result in better clinical outcomes and patient satisfaction (Atlas et al., 2009; Thom et. al, 1999; Larson, Yao, 2005). Optimum clinician-patient relations are essential for the moral discernment essential to ethical care, including shared decision making and patient-centered care.

Choice of clinician is recognized as an emotional issue: U.S. insurance health-plan marketing often cites broad choice of clinician in their public advertising, government interference in patient choice is a bogeyman of health-care politics, and patients state that they prefer choice (Harris, 2002). In addition, some requests, such as those for same-gender providers, are routinely considered appropriate and granted.

If we take the values of patient autonomy and importance of relationship seriously, denying a patient’s request for a different provider requires specific, strong justification. The clinician finding the patient’s motives as reprehensible isn’t enough by itself. A clinician’s duty to provide optimum care isn’t limited by personal judgments of the patient, just as a firefighter shouldn’t decide whether the homeowner is worthy before responding.

Justifications to limit a patient’s choice of provider based on personal characteristics include feasibility – that granting the request would unfairly disadvantage other patients or that the request arises as a consequence of a patient’s disorder and granting it would negatively affect treatment; or that granting the request would unduly harm the involved clinicians or other employees.1

In this particular case, the two potential justifications are adding to patient pathology and harming employees by creating a hostile workplace. Membership in a hate group and fringe politics is not, in and of itself, a mental disorder. But as a mental health clinician, my ears perk up at extreme inflexibility and antisocial views. However, in this case the nature and duration of the relationship make invoking this justification unlikely.

The best justification for denying this father’s request is a potential for harm to employees by creating a hostile workplace far outweighing any expected benefit of granting his request. Race-based requests for providers have been held to contribute to a hostile work environment. The Seventh Circuit Court of Appeals held that a nursing home’s policy to honor residents’ requests for white certified nursing assistants, along with methods of enforcing the policy and “racially-tinged comments and epithets from co-workers,” created a hostile work environment for an African-American employee (Chaney v. Plainfield Health Center, __ F.3d __ (No. 09-3661, July 20, 2010)). The court’s finding was based in labor law and not in relation to patients’ rights which seems appropriate to this justification.

Still there may be circumstances when a race-based request can be honored without harm to others. Indeed, there is no good to be had in forcing a patient into a relationship which will be less therapeutic than possible, or forcing a clinician to care for a patient who brings hateful feelings to the relationship.2

Regarding the clinician requested by the patient, providers are often called upon to treat patients whose personal views and lifestyles are repugnant, and patients have a right to optimum care whatever their personal characteristics or opinions. This is clear in the American Nurses Association (ANA) code of ethics. Provision one of the ANA code of ethics (2001) states, “The nurse, in all professional relationships, practices with compassion and respect… unrestricted by considerations of social or economic status, personal attributes or the nature of health problems.”

While physicians retain the right to choose their patients, the American Medical Association Code of ethics (2001) principle six states, “A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve,” the latitude of the “physicians’ prerogative” to choose patients is clarified and limited in their code’s Opinion 10.05:

“(2)…(b) Physicians cannot refuse to care for patients based on race, gender, sexual orientation, or any other criteria that would constitute invidious discrimination. . . nor can they discriminate against patients with infectious diseases.

“(c) Physicians may not refuse to care for patients when operating under a contractual arrangement that requires them to treat…”

When it is clear that racism or some other socially unacceptable reason is the basis for the requesting a change of clinician, certain limitations and understandings must be made clear to the patient: First, the patient needs to be told that the decision to grant the switch is based solely on providing the patient optimum care by providing a clinician with whom the patient can form a therapeutic bond. Second, allowing the patient to switch clinicians does not indicate the institution’s endorsement of his or her views; the patient needs to be told that the institution specifically does not recognize race or other analogous factors as the basis of any decision, and that the institution values and strives for a diverse workforce. Third, the patient’s desire for clinicians with certain characteristics may not be met at all points in time, for example, in emergencies or when no clinician with the desired characteristics is available. In addition, the patient should be assessed for an underlying pathology as extreme views may be related to a psychiatric disorder, and treatment should be offered if a disorder is diagnosed.

1Lack of decision-making capacity is the most common reason for limiting patient choice in many areas, but I am assuming that most patients who can make such a request and be consistent about the request would meet criteria for decision-making capacity.

2An argument could be made that the society and possibly the hateful individual benefits from forcing confrontation with the hated group, as this is a sometimes an effective way of breaking barriers, but this would be paternalistic, in that the patient would be forced to do something for his or her own good.

References:

  • American Medical Association. Code of Medical Ethics. 2001. http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics.shtml
  • American Nurses Association. Code of ethics for nurses with interpretive statements. Washington, DC: The Association; 2001. http://www.nursingworld.org/ethics/code/protected_nwcoe303.htm.
  • Atlas S, Grant R, Ferris T, Chang Y, Barry M. Patient–physician connectedness and quality of primary care. Annals of Internal Medicine. 2009;50: 325-335.
  • Chaney v. Plainfield Health Center, __ F.3d __ (No. 09-3661, July 20, 2010).
  • Harris K. Can high quality overcome consumer resistance to restricted provider access? evidence from a health plan choice experiment. HSR: Health Services Research. 2002;37(3): 551-571.
  • Larson E, Yao X. Clinical Empathy as Emotional Labor in the Patient-Physician Relationship. Journal of the American Medical Association. 2005;293(9): 1100-1106.
  • Thom D, Ribisl K, Stewart A, Luke D. Further Validation and Reliability Testing of the Trust in Physician Scale. Medical Care. 1999;37: 510–517.

OlsendougDoug Olsen, PhD, RN, is an Associate Professor in the College of Nursing at Michigan State University.

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