Tag Archives: Ethics

Justice in Healthcare: Bedside Rationing

Justice in healthcare is a substantial part of ethics in medicine, here we will cover some of the distinctive aspects of justice-based concerns and some basic ethics language to help wade through these interesting ethical issues.

READ: this short piece by Dr. Jonsen and Dr. Edwards goes into some detail about resource allocation in the medical setting.

GOAL: Familiarize yourself with some of the basics of resource allocation in the medical setting.

REVIEW THIS CASE: (full article is not required and only linked for reference) from Satel and Aronson (2008) “Transplant Tourism: Treating Patients when They Return to the U.S.” American Medical Association Journal of Ethics 10(5):271-277.

Now start to apply what you’ve learned. This reading provides some preliminary perspectives on a case of transplant tourism. This is just one among many forms of distributive justice where we see the ethical tensions in rationing at the bedside.  As you read consider:

  • What does bedside rationing mean in this case?
  • What is the central ethical question the physician faces in this case?
  • What do you think should be done?

Mr. Lawrence, a 50-year-old man with diabetes, is on dialysis for chronic renal failure and on the waiting list for a kidney transplant. Because he is in relatively good health, he is low on the list. His physicians advise him that he could be on the list for up to 3 years and that his health during that time would not be jeopardized, aside from the risks and inconveniences associated with long-term dialysis. Mr. Lawrence is divorced and on bad terms with his ex-wife; he has no children and has contacted his sister and her family to see if any of them could be a living donor. His sister is obese, at risk for diabetes, and is not a suitable donor candidate; no other family members or friends are willing to consider donating a kidney to Mr. Lawrence.

Unable to find a living donor and dismayed at the thought of remaining on dialysis for years, Mr. Lawrence decided to use his financial resources to purchase a kidney and undergo a transplant in China. He spent 2 months in China after the surgery, where he was cared for by a local transplant team that provided postoperative care, including monitoring his renal function and managing his immunosuppressant medications. The surgery occurred without any significant complications, and Mr. Lawrence’s recovery was excellent.

A month after his return to the United States, Mr. Lawrence ran out of the medications that his doctors in China had prescribed, including his immunosuppressants. He knew that failing to take the medication could cause graft rejection, so he made an appointment with Dr. Roberts, a nephrologist at a local academic center who specialized in care of renal transplant patients… Dr. Roberts understood how difficult it was to secure an organ, but didn’t want to be perceived as condoning Mr. Lawrence’s actions.

WATCH: When thinking about justice, it is important to explore the perspectives of all stakeholders and consider the systems through which they interact. In the case of transplant tourism, this means knowing where organs can come from as well as who seeks them out. This is a problem of global justice, which means that ALL governments and ALL healthcare systems are implicated in our ethical reasoning.  See this short video from BBC News that portrays one family’s experience.

GOAL: See one example of the complexities of different stakeholders perspectives on the trade of organs across countries

This is a very short clip, but delves into the emotions and sense of responsibility that pervade the distribution of organs as a very scarce resources across the world.

 

WATCH: Now that you’ve thought about the case on your own, see the perspectives of some experts from different professional backgrounds.

https://mediasite.hs.washington.edu/Mediasite/Play/4cb3214702c1459d90e52d85e4187b491d

GOAL: familiarize yourself with different professional backgrounds and different forms of expertise on ethics in a challenging clinical context.

 

READ: in preparation for the discussion of a different case where injustice appears at the bedside, review this OpEd by Dr. Ofri “The Insulin Wars”. This essay provides a robust perspective regarding what it can feel like to face societal injustices that obstruct one’s ability to provide optimal care.


For further reading (not required)…

There are several impressive documentaries on transplant tourism, here is one from the UK that is slightly older (2004) but provides extensive insight into the perspectives of various stakeholders including patients, families, and transplant surgeons on multiple sides of the debate: The Transplant Trade. There is another newer documentary that investigates China’s illegal organ trade called Human Harvest, which can be accessed through the library here.

There are a number of recent articles in the news regarding the insulin cost crisis in the US. See this OpEd by Maris Kreizman “Why Am I Stockpiling Insulin in my Fridge?” Or, watch this video: https://nyti.ms/2RcVv5u.

 

Virtues Ethics in Clinical Practice

In this session, we will be focusing on the Ethical Framework of VIRTUES (see Ethics Worksheet). We will investigate one of the primary obligations of clinicians: respect for patient autonomy, and consider what this might mean in more complex clinical cases. We will also explore another primary obligation of clinicians: the obligation to build trusting relationships with patients. This second obligation is often required for fulfilling the first, and these cases help us to see why.

(1) WATCH THIS VIDEO:

Insert mediasite recording of lecture here…

The video reviews the following concepts:

  1. Virtue
  2. Value
  3. Empathy
  4. Trust and Trustworthiness

**Keep in mind that this session will focus on cases that are meant to draw out population level biases, discrimination and other ethical concerns in particular clinical interactions. We will return to addressing societal, systematic, and broader justice issues in other sessions (see Justice in Healthcare). Likewise, we will come back to system level methods of advocacy (including advocacy for clinicians with underrepresented minority identities) in other sessions. Here, our intention is to start thinking creatively about how to be in relationship with particular patients in complex contexts.**

(2) READ: consider the role of empathy in medical student education while reading Walking a mile in their patients’ shoes:empathy and othering in medical students’ education. The article discusses the barriers for medical education to promote empathy and offers up a paradigm that may help trainees deal with these barriers and possible ideas of how they could be surmounted.

Physicians and patients alike will agree that empathy is integral to patient care. But it is not as easy as we might think. Empathy is not unlike other clinical skills and practices. Take learning to listen to a heart. We begin with simple instructions about how to use a stethoscope and then slowly build more precise attunement to any irregularities in heartbeat. In empathy, we begin with simple questions like “how do you feel today?”, but experience, practice, and knowledge will create greater attunement to the feelings of others. This article by Dr. Shapiro is just one step in the direction of building the knowledge necessary to becoming an excellently empathically attuned physician. 

(3) WATCH: Examined Life – Judith Butler & Sunaura Taylor

The conversation in this video is an excellent example of what it means to be curious, humble, trustworthy and empathic in conversation with others and across similarities and differences. Sunaura Taylor is an artist and writer, she articulates the social model of disability and demonstrates its presence in her life excellently. Taylor and Butler call on us to think about how what our bodies can do in the world depends on what the world allows physically and through social norms. Most importantly, Taylor and Butler show us how important it is to know about the experiences of others by talking with them and privileging their perspective by always remaining curious and open.  

 

SHIFTING GEARS A LITTLE… We’re going to look at the intersection of virtue and the complicated context of IV drug use and addiction. This reading will be directly relevant to an in-class exercise in which students will be expected to participate in a mock family meeting.

(4) READ this publication by Dr. Kirkpatrick (Cardiologist and Ethics Consultant at UWMC): 

“Infective Endocarditis in the Intravenous Drug User” in AMA Journal of Ethics. 2010;12(10):778-781.

Dr. Kirkpatrick uses a case and casuistic comparisons to critically reflect on the meaning of the term ‘futility’ in contexts where a patient’s addiction to IV drugs might be taken as a reason against pursuing a particular medical intervention.

As you read HIGHLIGHT the central ethics rules/obligations that Dr. Kirkpatrick applies in his discussion.

(5) OPTIONAL PREP FOR MOCK FAMILY MEETING: in light of what you’ve read in Dr. Kirkpatrick’s article, review the following case…

Moira is 28yrs old with two children (7 and 9yrs old). She has a history of injection opioid and meth use, and is admitted for fever and methicillin-resistant Staphylococcus aureus (MRSA) bacteremia. Moira has been admitted several times over the past 6 years for S. aureus endocarditis, had a mitral valve repair for an anterior leaflet perforation 5 years ago, and then a bioprosthetic valve replacement 2 years ago. Although she has tried rehabilitation programs a number of times in the past, she relapsed 2 months ago and continues to inject heroin. Each time she’s been admitted, staff have been surprised by her ability to recover, but also frustrated by each new admission. When an echocardiogram is done during this current admission, she is found to have a large vegetation on her bioprosthetic mitral valve, with a small perivalvular abscess.1 She is currently receiving antibiotics and being considered for a valve replacement. Her surgeon believes that a mechanical valve would be the best option for long-term cardiac function, but is concerned that she won’t adhere to anticoagulation therapy and could reinfect the valve, given her ongoing injection drug use.

Moira alternates between passive acceptance of her care and anger at staff. She will sometimes knock food off her tray, throw her bedpan, or verbally lash out at medical staff (e.g. “just leave me alone!” or “don’t pretend you care!”). Because of this, staff members have warned each other to take caution when entering her room. Moira has a “behavior contract” and often behaves more passively when her father (Rick) is in the room. So, the medical team typically waits until the father is present to conference with the patient. Moira is often alone in her room as her father is very busy with his job and taking care of Moira’s two children.

The surgical team disagrees about whether or not to offer the valve surgery to Moira. While one of her nurses doesn’t understand why it has not yet been offered, another feels burnt out from caring for Moira over several admissions and is frustrated by Moira’s lack of participation in her care. Similarly, while the attending surgeon is reluctant to do another valve replacement knowing it will not fix Moira’s underlying disease (her addiction), the resident believes that she is a sufficiently good candidate medically and it will likely allow her more time (months to years) with her family.

Moira and her family have been consistently homeless or houseless. She had been staying in a shelter with her children prior to the current admission. While the children’s father is not present, Moira’s father Rick is very involved in her care and is in the process of adopting the two children.

Should Moira be offered a third heart surgery?

Family Meeting: The care team, Moira and her dad will meet in a family meeting to explore Moira’s goals, and the previous challenges in her care, in order to inform future care decisions, including the possibility of a future valve replacement.

 


For further investigation on addiction, see…

  • Dr. Maté’s website: https://drgabormate.com/.
  • This short article describing the power of narrative to see different viewpoints on the fentanyl poisoning crisis: Living with Pain and Opioid Addiction: Bioethics Narratives 
  • If you’re feeling eager for more on empathy… explore this article on How to Teach Doctors Empathy which talks about the growing emphasis on empathy training for health care professionals and describes a few such trainings across the country.
  • Also, we highly recommend watching this TED Talk on addiction and social connection: Everything you think you know about addiction is wrong | Johann Hari

 

Discussion Guidelines

SETTING THE TONE

Ethics discussions are intended to explore assumptions and reasoning behind positions. Reasonable people can disagree, and have justified reasons for doing so, about the best course of action. Hence, we focus on exploring and understanding positions and thinking about alternatives rather than on the “right” answer. While there can be wrong answers, there may also be more than one ethically permissible pathway forward.

Faculty help set the tone for the discussion: In ethics, we often talk about issues that are controversial. We want to create a space where students can be candid because we genuinely WANT to hear different perspectives/reasons.  To improve ethical reasoning (our goal), students need to practice making ethical arguments without focusing too heavily on coming to the ‘right’ conclusion.  Often more than one position/course of action is ethically appropriate.  Sometimes one position is ethically and clinically most persuasive however it is through trial and error that they will come to this. Let them make any argument, but encourage them to justify their positions with evidence and sound reasoning.  Once a best approach is identified, students will grapple with the practical issue of how to handle that obligation if they or their patients believe differently.  Facilitators will help them find respectful ways to do that.

We expect students to have different opinions.  That is OK and you should feel free to share honest opinions with each other. We want to explore the reasons we disagree (or agree) in a way that demonstrates curiosity and respect for each other. We also want you to explore your special responsibilities as physicians.

Lessons from Tuskegee, Havasupai, and HeLa for Health Research Today

In this module, we review three landmark cases for U.S. research ethics history and explore their impact on contemporary research practices.  Today, it is routine to use residual samples collected for clinical practice, or medical records, to answer research questions. We often do this with waivers of consent (without asking or informing patients). This is changing, and our history helps us understand why….

Start by reviewing the Ethics Case Analysis Toolkit

Remember some of the fundamental ethics concepts we’ve covered so far:

Read this seminal article on the Tuskegee Syphilis study (the study was originally/officially titled “The Effects of Untreated Syphilis in the Negro Male”), which provides an overview of the study and the injustices found within the study itself and its aftermath…

Baker S.M., O.M. Brawley, L.S. Marks. Effects of Untreated Syphilis in the Negro Male, 1932 to 1972: A closure comes to the Tuskegee study, 2004. Urology (2005): http://usrf.org/uro-video/Tuskegee_2004/Tuskegee_study.html [NOTE: Embedded videos give you a bit more background and are recommended, but not required.]

As you’re reading, consider the following:

In 1932 when the U.S. Public Health Service Study of Untreated Syphillis began, there was no effective treatment for syphilis. When penicillin became available in the 1950s, researchers ‘justified’ their decision to continue the observational study without treatment because they wanted to make good on the time the men had already invested in the study.  In their mind, good science required they continue to get the longitudinal data.  They justified their decision further noting that men in the study were from poverty and did not have access to healthcare without the study.

  • How were the research subjects harmed or otherwise treated unjustly? For instance, what obligations or rights were violated? Which virtues were neglected or failed?
  • Can you imagine similar reasoning being used now, with other studies, other participants?

Then take a look at a more contemporary piece in the NYTimes, which focuses on a recent manifestation of similar norms…

Harmon A. Where did you go with my DNA? New York Times (2010): http://www.nytimes.com/2010/04/25/weekinreview/25harmon.html?_r=0

As you’re reading, consider the following:

In 1951, clinical researchers grew cells from Mrs. Henrietta Lacks’ cervical cancer biopsy. These cells became an immortal cell line that contributed to several ground-breaking health innovations, including the polio vaccine. Mrs. Lacks was never asked to contribute to research or told about the cell line. In keeping with the ethics of the day (and now), consent was not required to use residual tissues for research purposes if de-identified so no regulations or laws were broken.

  • How was Ms. Lacks harmed?
  • How was the Lacks family harmed?

Here is a second more contemporary piece in the NYTimes…

Harmon A. Indian Tribe Wins Fight to Limit Research with DNA. New York Times (2010): https://www.nytimes.com/2010/04/22/us/22dna.html

As you read, consider…

In 1999, an Arizona State University researcher approached the Havasupai tribe with a proposal to study genetics of diabetes, which was a condition from which many in the tribe suffered. After building relationships with tribal leaders, they gave consent for the blood draws and genetic study of diabetes, in hopes that something could be found that would help their people. The genetic analysis did not find anything specific so the samples were de-identified and frozen. Later, other researchers including graduate students in the research group used the samples for other research, such as migration patterns, schizophrenia, and inbreeding.

  • How were the Havasupai people harmed by these additional uses of their samples?
  • What could be done differently to bridge the gap between research regulations and what the tribe needed for ethical research conduct?

Finally, WATCH this TED Talk on the demand for diversity in genetic research and why current research is insufficient: Fox K. Why genetic research must be more diverse. TED Talk, February 2016.

As you’re watching consider…

  • What does Keolu Fox tells us about how medical practitioners and researchers can make research practices more trustworthy and respectful?
  • Can you think of other ways to support these ethical obligations going forward?

As always, your Ethics Resources are there to help guide your reasoning in these complex moral issues. Remember to push yourself by considering how a skeptic might respond.


For further investigation…

You can see the OHRP Guidance on Research Involving Coded Private Information and Biospecimens: http://www.hhs.gov/ohrp/policy/cdebiol.html.

The Belmont Report is a thorough report on the ethical principles and guidelines for research with human subjects. It was a significant interdisciplinary effort in response to grievous harms on human subjects as seen above. You can find it here: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html.

The Bell Curve

Many of you are familiar with Atul Gwande and his writings.  We will refer to The Bell Curve, What happens when patients find out how good their doctors really are? by Dr. Gwande many times in EHM.  This article emphasizes many aspects of the course.  Some of the major themes are health systems improvements, social determinants of health, inter professional education, communication, professionalism and ethics.

Click the link to download The Bell Curve highlighted for this reading.

We have highlighted the passages with in the reading that are directly related to this session.

  • What did you find surprising about this article?
  • How did you feel when you read about the initial appointment Honor and Don Page had with the team at Cincinnati Children’s Hospital?
  • What did you think about the appointment Alyssa had with Cori Danes?
  • Compare and contrast that with Janelle’s appointment with Dr. Warwick at Fairview-University Children’s Hospital in Minneapolis.
  • Write down some different strategies employed by both care teams.  Are there other strategies you might have employed when communicating with these two patients?
  • Did this article make you rethink your understanding of ‘non-adherence’?  If so, how?