The Burden of Serving: Who Benefits?

Comments open through August 1

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

By Karen Kelly-Blake, PhD

“We overworked, underpaid, and we underprivileged
They love us, they love us (Why?)
Because we feed the village”

– Killer Mike of Run the Jewels
“Lie, Cheat, Steal,” Run the Jewels 2 (2014)

In the United States, persons of color suffer disproportionately from a host of health care disparities related to racism, discrimination, lack of access, and undertreatment. When considering this disproportionate suffering, it is relevant to note the impact of the current physician shortage. That shortage is especially acute for underrepresented in medicine (URiM) physicians. Moreover, it is equally salient to recognize that URiM physicians provide care for underserved populations at levels disproportionate to their professional representation. There is a powerful narrative that a diverse and representative medical workforce, one reflecting general population characteristics, can effectively address access issues, increase satisfaction, and ultimately improve health outcomes. It seems reasonable to surmise that shared concordant characteristics (e.g. race/ethnicity, language, gender, geographic location, etc.) between patients and physicians might lead to improved communication and satisfaction in the clinical setting. Alsan et al. found that black patients paired with black physicians were more likely to agree to preventive screening, leading the authors to conclude that the racial/ethnic concordance between patient and physician was a significant factor for the observed increase in screening adherence. Kelly-Blake et al. found that the most mentioned rationales for increasing patient-physician concordance were patient-physician relationship and service commitment to care for the underserved.

A 2001 IOM (now the National Academy of Medicine) report warned that “we must be vigilant against the potentially pernicious effects of creating the expectation that minority physicians are being trained solely to provide health care services to minority patients or to research minority health issues.” It is now 2019 – nearly 20 years on – and so it seems a good time to revisit that prudent caution. Have we heeded the IOM’s prescient warning? I invite you to join me for a brief thought experiment. Suppose we made the profession of medicine responsible for caring for our most vulnerable—the sickest sick and poorest poor? Imagine that all patient panels included a significant number of homeless, poor, mentally ill, and uninsured. Imagine an equal, fair, and just distribution of medical care service to the underserved. The described distribution would lighten the service expectation on URiM physicians. We know that URiM physicians bear a disproportionate burden of providing care for the most vulnerable patients in the most challenging resource poor environments. It’s not unreasonable to imagine how such a burden might substantially constrain their ability to meet quality care metrics for reimbursement. Moreover, as we move from volume to value for reimbursement, for those URiM physicians who carry comparably higher educational loan debt and work to a greater degree than their white counterparts in resource poor communities with the sickest sick, the challenge of achieving measurable improvements in quality care would seem untenable.

The individual altruistic motivations of URiMs to “give back,” “make a difference,” and “help the community” are powerful. And indeed, those motivations are likely influenced by “community” expectations that people will return “home” to practice. Certainly, URiMs have valuable insider experiential knowledge about navigating the challenging, socially-layered U.S. landscape. Those perspectives would undoubtedly bring an enhanced sociocultural perspective to the clinical encounter. Community expectations align with similar sentiments. Individuals coming from underserved communities who desire to become a physician are often supported, encouraged and, yes, expected to come back to serve in the community. The community understandably holds out hope that someone from the neighborhood will come back and do good work for the community. While understandable, is such a community expectation fair?

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Image description: an individual with angel wings wearing blue surgical scrubs, a face mask covering their mouth, a cap, and glasses is standing with their arms crossed in front of a neutral background. They have a stethoscope around their neck. Image source: Sathish Kumar Periyasamy from Pixabay.

Desire to serve and to give back are laudable and admirable virtues, but is the “narrative of service” subtext disproportionately and perhaps unfairly limiting URiM potential professional opportunities? In our desire to have URiMs serve the underserved as physicians, are we paradoxically denying them opportunities to serve the profession of medicine as Chairs of Departments, Deans of Medical Schools, Chief Executive Officers of Hospitals, or Heads of NIH? Are we saying, “welcome to the house of medicine, but we need you to work in the basement kitchen”? If URiM have become the workhorses of medicine, who then is provided the opportunity to become the stallions and thoroughbreds? White medical student and physician counterparts do not receive the same targeted messaging about service commitment.

Research has shown that higher numbers of primary care physicians lead to better health and decreased mortality. Despite the call and the need for more primary care physicians, medical students are not choosing primary care specialties. Mona Signer, CEO of The Match, suggests that income is a factor because choosing a non-primary care specialty means a higher paycheck. The highest paying specialties remain overwhelmingly white and male. Who then is allowed the unfettered freedom to make the non-primary care specialty choice? Who gets to have access to opportunities untied to community and societal expectations? The burden of serving exhausts URiM talent and expertise. So, who reaps the benefits? If the argument is that: 1) society benefits from more primary care physicians in underserved areas, especially critical in rural areas, 2) medical schools benefit by meeting more stringent LCME accreditation requirements for student diversity, and 3) patients benefit by having physicians in their community that look like and sound like them, then undertaking strategies to ensure a broadly representative medical workforce is indeed a national priority. But, if the argument is that URiM value is to “serve the underserved” then the IOM warning has indeed been ignored. Racial congruity alone is insufficient to address the disparities gap in U.S. health care, and like-to-like patient-physician matching may dangerously and perversely heighten discrimination against URiM physicians.

URiM should not be selectively steered, based solely on assumptions of their background, to pursue a particular medical career pathway. The healthcare workforce should reflect the nation’s population and equally, it is still fair and just to question why we are channeling URiMs to do work not expected of the entire medical workforce. How might we ensure equity of healthcare work practice? Ensuring such equity is a moral obligation and the right thing to do. Professional fairness and responsibility within medicine mandate that the medical workforce equitably and fairly assume shared responsibility for meeting the healthcare needs of the underserved. Continuing an expectation of burdening the already overburdened is not just health care.

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

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, August 1, 2019. 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: Patient dumping: why are patients disposable?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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New health care justice article from Dr. Fleck in ‘Cambridge Quarterly of Healthcare Ethics’

Leonard Fleck photoCenter Acting Director and Professor Dr. Leonard Fleck has an article in the July 2019 issue of Cambridge Quarterly of Healthcare Ethics. “Precision QALYs, Precisely Unjust” addresses issues of health care justice and cost effectiveness.

Abstract: Warwick Heale has recently defended the notion of individualized and personalized Quality-Adjusted Life Years (QALYs) in connection with health care resource allocation decisions. Ordinarily, QALYs are used to make allocation decisions at the population level. If a health care intervention costs £100,000 and generally yields only two years of survival, the cost per QALY gained will be £50,000, far in excess of the £30,000 limit per QALY judged an acceptable use of resources within the National Health Service in the United Kingdom. However, if we know with medical certainty that a patient will gain four extra years of life from that intervention, the cost per QALY will be £25,000. Heale argues fairness and social utility require such a patient to receive that treatment, even though all others in the cohort of that patient might be denied that treatment (and lose two years of potential life). Likewise, Heale argues that personal commitments of an individual (religious or otherwise), that determine how they value a life-year with some medical intervention, ought to be used to determine the value of a QALY for them. I argue that if Heale’s proposals were put into practice, the result would often be greater injustice. In brief, requirements for the just allocation of health care resources are more complex than pure cost-effectiveness analysis would allow.

The full text is available online via Cambridge University Press (MSU Library or other institutional access may be required to view this article).

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Dr. Kelly-Blake a co-author of shared decision-making article in ‘American Journal of Preventive Medicine’

Kelly-blakeCenter Associate Professor Dr. Karen Kelly-Blake is co-author of a research article in the July 2019 issue of the American Journal of Preventive Medicine. The multi-institution research team includes lead author Dr. Masahito Jimbo of the University of Michigan.

“Interactivity in a Decision Aid: Findings From a Decision Aid to Technologically Enhance Shared Decision Making RCT” reports on a study that used a randomized control trial to compare the effect of a web-based decision aid that addressed colorectal cancer screening. They concluded that the interactive decision aid did not improve the outcome compared to the non-interactive decision aid.

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

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Dr. Fleck presents on elder ethics at International Bioethics Retreat in Paris

Leonard Fleck photoCenter Acting Director and Professor Dr. Leonard Fleck recently presented at the 2019 International Bioethics Retreat, held in Paris, France on June 26-28. Dr. Fleck chaired a session titled “In the Clinic” which featured topics on clinical ethics and medical decision-making.

In a session titled “Elder Ethics,” Dr. Fleck presented a talk on “Whither Frailty: Ethical, Economic, Medical and Policy Challenges.” Dr. Fleck addressed four key questions: (1) How should frailty be defined as a medical phenomenon? (2) What should be the scope and limits of respect for autonomy in the case of the frail elderly? (3) What should be the scope and limits of acceptable risk of harm to the frail elderly in the case of aggressive medical or surgical interventions? This question pertains to the responsibilities of physicians and surgeons in proposing such interventions. (4) What issues of health care justice deserve the attention of policymakers when it comes to meeting the health care needs of the frail elderly?

The first problem refers to the complexity of frailty as a medical phenomenon. Frailty is not disability; frailty is primarily associated with the elderly. Some researchers describe frailty as “accelerated aging.” Roughly 38% of individuals over age 90 would be described as being frail. Individuals may be frail and not have any life-threatening medical problems. Most of the frail elderly are able to make medical decisions for themselves, which is why there is the ethical issue of respect for patient autonomy versus justified medical paternalism. Among the behavioral traits of the frail elderly would be reduced activity (prolonged bed rest), very slow mobility, weight loss, extreme old age, diminished handgrip strength, polypharmacy, and social isolation. Clearly, frailty exists along a complex spectrum requiring considerable acuity of judgment to avoid ethical missteps.

To illustrate the potential for ethical missteps, labeling an elderly individual as “frail” can result in inappropriate paternalistic decisions, negative stereotypes, and discrimination. Alternatively, failure to identify an elderly individual as frail can result in overly aggressive medical treatment (and a range of avoidable medical harms) as well as a lack of attention (and resources) that might better address the social needs of the frail elderly that would represent a greater net benefit than aggressive medical treatment.

We might wish to go to the research literature for some guidance. However, there is little actual research regarding the frail elderly and aggressive medical or surgical care. Further, it is difficult to imagine how such research could be accomplished in a way that was not ethically problematic. This makes the responsibilities of physicians in clinical practice who care for the frail elderly all the more challenging.

Dr. Fleck concluded with two points: (1) From the perspective of health care justice, from the perspective of what a just and caring society ought to do, resources should be redirected from aggressive medical care for the frail elderly to their social service needs. However, the fragmented system for financing health care in the U.S. gets in the way of easily making this re-allocation of resources. (2) Soft paternalism will often be ethically justified in caring for the frail elderly considering aggressive medical care. A non-committal stance on the part of physicians in these circumstances, under the ethical guise of respect for patient autonomy, will most often be neither just, nor caring, nor respectful of patient needs and their considered values.

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Dr. Karen Kelly-Blake promoted to associate professor

Karen Kelly-Blake photoThe Center for Ethics and Humanities in the Life Sciences is thrilled to announce the promotion of Dr. Karen Kelly-Blake to associate professor. Dr. Kelly-Blake holds an appointment in both the Center for Ethics and the Department of Medicine in the College of Human Medicine (CHM).

Dr. Kelly-Blake holds a PhD in medical anthropology from Michigan State University and specializes in health services research, shared decision-making, and medical workforce policy and development. She joined the Center in 2009 as a project manager on a grant of Dr. Margaret Holmes-Rovner’s, became a research associate in 2011, and assistant professor in 2014. She has played an integral part in the development and implementation of social context of clinical decisions (SCCD) content in the CHM Shared Discovery Curriculum.

Dr. Kelly-Blake is currently working with colleagues in the Department of Medicine, the Department of Writing, Rhetoric, and American Cultures, and the Department of Epidemiology and Biostatistics to resubmit an NIH R01 to assess implementation of the Office Guidelines Applied to Practice Program for medication adherence for heart disease management in people with diabetes in Federally Qualified Healthcare Centers across the state of Michigan. She is also working with colleagues at the University of Michigan to submit a new NIH R01 to assess a multi-level clinical intervention for patient navigator enhanced colorectal cancer screening in community primary care practice settings. Additionally, she is working with the Assistant Director of the Center for Ethics on a project to assess the value of patient-physician concordance on patient health outcomes.

Please join us in congratulating Dr. Kelly-Blake!

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The Ethics of Becoming an Adult in a Health Research Setting in Africa

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

By Rose Mwangi

It is three years since the Centers for Disease Control and Prevention (CDC) reversed course to recommend that 11- to 12-year-old girls receive two doses of HPV vaccine to protect against cancers caused by human papillomavirus (HPV) infections, administered at least six months apart. This then overruled the previous “three dose” recommendation – but the CDC added the caveat that “teens and young adults who start the series later, at ages 15 through 26 years, will continue to need three doses of HPV vaccine to protect against cancer-causing HPV infection.”

When either recommending a health intervention or conducting research among adolescents (11-12 years), ethical principles require that in addition to the rightful consent processes, privacy and confidentiality especially should be observed. In that light, countries need to ensure that they meet some requirements of legal, ethical and moral issues pertaining to such situations. However, when it comes to adolescents, there commonly is some uncertainty about a proper ethical balance between protection from risks, confidentiality, privacy and the possible countervailing need for parental consent.

Global health

Image description: a black and silver stethoscope is curved around a small globe on a white background. Image source: Marco Verch/Flickr Creative Commons.

In resource-poor African settings, health access barriers are paramount, and they present major impediments to national and regional development across the continent. Additionally, before recommendations such as the aforementioned CDC HPV advice can be implemented, the pragmatic reality of the particular circumstances needs to be taken into consideration. There are other similar recommendations that are influenced by the vulnerabilities of women’s reproduction that fall into this same uncertainty.

A lack of clarity in ethical guidelines within African nations makes any attempt to follow the CDC recommendations a challenge. Moreover, there are additional dilemmas encountered when trying to follow basic ethical principles. These complexities influence the follow-up treatment for adolescents. In many cases it is the adolescent’s parents who take the primary role in decision making, oftentimes excluding those children in making decisions about their own health, and sometimes even denying them the potential benefits of health-preserving interventions. In essence, such African adolescents are left in a confused state of being both children and adults.

Using illustrative examples below, I draw from experience and insight in Tanzania. I make the case that the need for parental consent needs to be revisited so as to best customize the fit of that need to certain settings in reproductive health.

Contraceptive services
In many African countries the law is silent on the age a young person may access contraceptives. For example, according to a research conducted in Tanzania, 15 is the youngest age at which girls use contraceptives. Yet girls can obviously conceive before that age, and there is no law that prevents the usage of contraceptives at any age. Therefore, I argue that the default legal position requiring parental consent should be overruled; this would allow more freedom for young girls who wish to have access to reproductive control.

Age of consent for HIV testing
The age of consent for HIV testing is 16 years in Tanzania. Testing of persons under the age of 16 must be carried out with the consent of parents or legal guardians. However, the law does not stipulate a particular age at which an adolescent’s HIV status can be reported directly to him/her. It says only that test results are confidential and shall be shown only to the tested person with an exception of those under 18 years of age.

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Image description: The flag of Tanzania waves on a flagpole with blue sky in the background. Image source: Stefano C. Manservisi/Flickr Creative Commons.

Age of consent for Antiretroviral Therapy (ART)
In Tanzania, the 2001 national AIDS control policy provides universal access to ART. However, there are no explicit rules regarding either age specification or consent. The policy specifies that “people living with HIV and AIDS have the right to comprehensive health care and other social services including legal protection against all forms of discrimination and human rights abuse.” Parental consent for minors therefore should not have a role in accessing ART.

Age for consent and access for Pre-exposure Prophylaxis (PreP) and Post-exposure Prophylaxis (PEP)
In the same way that HIV-infected young people should have the rights and obligations to which they are entitled, so too should they have ready access to PreP and PEP. However, since no explicit rule is in place with regard to the age of consent, might we then safely/ethically assume that any person irrespective of age should have access to PreP? Similarly, it is not clear whether an adolescent should be allowed access to, or alternatively, be prohibited from PEP as the law and guidelines are silent on access for young persons.

Abortion and post-abortion care
In Tanzania, as in all other African countries, abortion is illegal. Tanzanian law is very clear on the consequences. However, there are no age-specific-rules regarding the age of consent for access to antenatal care (ANC). Indeed, when an adolescent becomes pregnant, regardless of the young woman’s age, health workers do not require parental consent for ANC. Therefore, I maintain that this dis-equal access amounts to a contradiction in the ethics of care.

Access to HPV vaccines and cervical cancer screening and treatment
Returning to my first point, globally, Tanzania has one of the highest incidences of cervical cancer. To address this health concern, the country recently has agreed to provide HPV vaccine for girls aged 9-13 years. What then is the parental role?

This message from CDC Director Tom Frieden, MD, MPH, in a 2016 press release could perhaps be viewed as clear and feasibly be implemented in a developed country:

“Safe, effective, and long-lasting protection against HPV cancers with two visits instead of three means more Americans will be protected from cancer. This recommendation will make it simpler for parents to get their children protected in time.”

This CDC claim about simplicity presumes that such parental consent would be forthcoming and would therefore equate to full HPV protection for the adolescent. But as I’ve pointed out, that might not be the case in Tanzania and other developing countries.  Perhaps we then should take a new approach in dealing with ethical issues related to accessing health in low-resource settings. Parents have an important role in ensuring the health of the adolescents, yet as I’ve demonstrated in the above, in those areas of a sensitive reproductive nature, the parental role may need to be secondary so as to ensure the adolescent’s health and well-being. If reproductive health interventions among adolescents are to succeed, perhaps we need to reach out directly to adolescents. When considering the daunting health risks adolescents face in low-resource settings, there is a need to lower access barriers and allow adolescents to consent on their own behalf. This then would give them the freedom to decide when and with whom they wish to share such sensitive information, and to directly benefit from available health interventions. This needed policy shift would place the ethics of becoming an adult in resource-challenged settings on another level.

Rose Mwangi photoMs. Rose Mwangi is a past beneficiary of an NIH Fogarty Fellowship at the Michigan State University Center for Ethics and Humanities in the Life Sciences. She has participated as an observer in Community Research IRBs at Michigan State University. Ms. Mwangi is very involved in Pan-African Bioethics and does research ethics in Tanzania. She has been involved in international clinical trials playing a key role in developing consent processes for rural and low literate communities; she has done important systematic qualitative studies advocating for social responsibility among global health researchers. Her recent milestone is leading the development and integration of Bioethics curriculum at Kilimanjaro Christian Medical University College (KCMUCo) as part of the European and Developing countries Partnership (EDCTP) in which UK and Tanzania are key stakeholders. Ms. Mwangi Co-Chairs the Institute Review Board (IRB) and is the Bioethics and Research Ethics instructor at KCMUCo and other medical institutions in Tanzania.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 11, 2019. 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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Listen: Activating and Empowering Patients

No Easy Answers in Bioethics logoNo Easy Answers in Bioethics Episode 15

How can shared decision-making tools and evidence-based guidelines be used to ensure that every patient receives the best care possible? How can patients be activated and equipped to interact with their provider and manage their health condition? In this episode, three Michigan State University researchers—Dr. Bill Hart-Davidson, Professor in the Department of Writing, Rhetoric, and American Cultures, Dr. Karen Kelly-Blake, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine, and Dr. Ade Olomu, Professor of Medicine in the Department of Medicine—discuss a shared decision-making tool they developed called Office-GAP, Office-Guidelines Applied to Practice. Together they discuss the origins of the project, and the results so far in improving outcomes for patients managing chronic illness by using a simple checklist to get patients and providers on the same page.

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 episode 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. Episodes are hosted by H-Net: Humanities and Social Sciences Online.

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