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.
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 an inclination to ration at the bedside.
What is the central ethical question the physician faces in this case?
What do you think should be done? Why?
How does this case affect your vision of collective efforts towards social justice?
WATCH: When thinking about justice, it is important to explore the perspectives of all stakeholders and consider the procedures 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. See this short video from BBC News that portrays one family’s experience.
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.
In this session, we will be focusing on the Ethical Framework of Rules/Obligations (see Ethics Case Analysis Tool). 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.
**Keep in mind that this session will focus on cases that are meant to draw out population level biases and ethical concerns in particular clinical interactions. We will be addressing more 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.**
As you read CONSIDER… Autonomy is a complicated concept. While in the US it is often understood as the capacity of an individual to make independent choices, this isn’t the reality of choice and this article helps us to see why. Our choices are always enmeshed in complicated interpersonal (e.g. family) and structural (e.g. cultural norms) social relations.
How do you think building trust and being trustworthy relates to respecting patient autonomy?
As you read… COMPLETE THIS ETHICS WORKSHEET for DORIS.
CASE 1 – DORIS
Doris at hospital admission
Doris Carlson is a 72-year-old woman who was brought to the ED by medics shortly after collapsing at home with shortness of breath and leg weakness. She was in her usual state of health, able to walk a couple of blocks and care for herself, until a week prior to admission, when she noticed that she was even more short of breath than usual and her legs were swelling. She thought maybe it was the heat, but four days ago she couldn’t lay flat to sleep. Finally her legs were so weak that she fell in her hallway this morning. She was able to crawl to the phone to call the medics, who had a tough time getting her out of her apartment because the rooms were stacked with books and periodicals.
Doris lives alone and says she likes it that way. When she retired 4 years ago from her job as a librarian, she moved into a second floor apartment with an elevator. Doris has a BMI of 35 and was diagnosed with type 2 diabetes and hypertension almost 15 years ago, but hasn’t actually seen a doctor in years and takes no prescription medications. She does take Vitamin D because she read about the low levels among Seattleites. At baseline, she can walk a couple of blocks before feeling out of breath, and is able to get to the grocery store and other key places on foot. In the week before collapsing though, she hadn’t been able to get to the store, and had no one she could call on for help.
Doris at Hospital Day 19
Doris refused most recommendations and therapies, yet she loved to have long conversations with everyone on the team. The Cardiology team spent hours teaching about her cardiac disease, and trying to negotiate a mutually acceptable plan. The pharmacy team spent hours providing drug education. The team eventually resorted to only sending one person into the room during morning rounds to avoid delaying their rounds. The dietitian had prolonged conversations about better diet choices for diabetes, as well as a low sodium diet (and also tried to help out with the avocado situation). Hospital dentistry evaluated Doris given her lack of dental care, diabetes, and left lower jaw tenderness while in the hospital, but she refused to go down to the clinic for a full exam or x-rays. The team social worker spent hours first trying to identify community supports, and then skilled nursing facility placement, only to have Doris refuse all options. Doris even refused to be discharged home by cabulance insisting she would take a taxi.
While most patients on the medical floor have a primary nurse, no one would volunteer to take Doris. Eventually, a plan was developed for rotating care of Doris daily among the nursing team to diminish frustration. Doris would often complain that she didn’t like someone on her care team, often trying to engage the person currently with her to “help” with some problem. The physical therapist and occupational therapist also spent hours with Doris but had a different experience. While Doris was fairly passive receiving OT and PT therapy, she was appreciative of their attention and efforts.
Because of her unwillingness to take most oral medications, Doris remained quite hypoxic on room air, and was thus not ready for discharge. She declined home oxygen, though she wore it in the hospital. Doris’ hospitalization dragged on for weeks during a time when the hospital was full and other patients were being diverted.
The Cardiology team requested a Psychiatry consult to assess Doris’ decision-making capacity. Doris refused to talk to Psychiatry but after discussing with other team members, the psychiatrist (and cardiologists) felt Doris was indeed able to make decisions for herself.
By hospital day 19, the Cardiology team decided to discharge Doris with or without home oxygen, medications, dental follow-up, assistive equipment or any other social services. They had offered ample recommendations but she was unwilling to accept any. Other team members were uncomfortable with this plan, given that her room air oxygen saturation remained in the low 80s. Her nurse asked if she was supposed to just remove the oxygen at the curb and wish her “good luck” as she got in the cab?
One team member eventually was so uncomfortable, discharge was delayed and an ethics consultation was requested.
SHIFTING GEARS A LITTLE…We’re going to look at the intersection of the values of autonomy and trustworthiness in the more 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):
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.
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.
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….
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…
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?
In 2013, European researchers published the DNA of the HeLa cell line without asking permission of the family. Later that year, UW researchers did it differently. Who had the best approach, and why?
Here is a second more contemporary piece in the NYTimes…
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?
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.
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?