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Watch the Experts: Justice in Healthcare: Bedside Rationing

WATCH the experts respond to the case 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. (https://mediasite.hs.washington.edu/Mediasite/Play/4cb3214702c1459d90e52d85e4187b491d)

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 was aware that many of the organs secured in China came from executed prisoners who did not always consent to organ donation. Further, Dr. Roberts was wary because purchasing organs was illegal in the U.S. Having worked in the transplant field for several decades and witnessed numerous changes in the regulations about and care of 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.

  • How would you frame the central ethics question in this case?
  • What are the key features of the case that would guide an ethically appropriate response from your perspective?
  • What might make this case challenging from your perspective?

 

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.

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.

READ: Satel and Aronson. (2008). “Transplant Tourism: Treating Patients when They Return to the U.S.”, Virtual Mentor, American Medical Association Journal of Ethics. Volume 10, Number 5: 271-277.  

As you read CONSIDER:

  1. What does bedside rationing mean in this case?
  2. What is the central ethical question the physician faces in this case?
  3. What do you think should be done? Why?
  4. 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.

What is Bioethics?

We all face ethical questions, uncertainties and conflicts. Sometimes they are mundane, everyday sorts of inquiries (should I keep a promise to meet a friend on time?), others are much bigger, character affirming and even life altering (should I withdraw life sustaining treatment for this patient?).

Bioethics, specifically medical ethics, helps us to reason through some of the difficult ethical questions that arise in medicine.

WATCH this video of Dr. Maggie Little offering an introductory look at bioethics. It will provide the necessary groundwork for thinking about the meaning of ethics in medicine as we start to look at both paradigm historical cases and contemporary cases.

 

Then READ this article to see what Bioethics means to clinicians at the bedside:

Berwick, Donald. (2017) “Moral Choices for Today’s Physician”, JAMA 318(21):2081-2082.

As you read this article, CONSIDER:

  • How are moral choices different from other choices (e.g. choosing what to eat for dinner or what to wear to class)?
  • How might moral choices be particularly important to you in your role as a physician?

REVIEW — here are some of the Key Ethics Concepts that arise in the above material:

You can find more Key Ethics Concepts on the Ethics Resources Page

 


If you’re looking for more, you can find physicians’ stories of ethics at the bedside in a number of journals and books, here are a couple of samples (COMPLETELY OPTIONAL) …

Complexities in Decision-Making Capacity

REVIEW THESE KEY ETHICS TERMS:

READ this seminal article by Paul Applebaum on the criteria for assessing a patient’s capacity to make medical decisions: Applebaum, Paul S. (2007). “Assessment of Patients’ Competence to Consent to Treatment”, The New England Journal of Medicine, 357(18): 1834-1840.

Keep in mind Applebaum’s 4 Criteria because they are frequently used today as the standard for assessing decisional capacity and assessing for capacity to consent to treatment. :

CRITERIA FOR ASSESSING DECISION-MAKING CAPACITY
  1. Communicate a Choice
  2. Understand the Relevant Information
  3. Appreciate the Situation and its Consequences
  4. Reason About Treatment Options

REVIEW THESE TWO CASES:

CASE 1

A 64-year-old woman with MS is hospitalized. The team feels she may need to be placed on a feeding tube soon to assure adequate nourishment. They ask the patient about this in the morning and she agrees. However, in the evening (before the tube has been placed), the patient becomes disoriented and seems confused about her decision to have the feeding tube placed. She tells the team she doesn’t want it in. They revisit the question in the morning, when the patient is again lucid. Unable to recall her state of mind from the previous evening, the patient again agrees to the procedure.

Is this patient competent to decide? Which preference should be honored?

CASE 2

A 55-year-old man has a 3-month history of chest pain and fainting spells. You feel his symptoms merit cardiac catheterization. You explain the risks and potential benefits to him, and include your assessment of his likely prognosis without the intervention. He is able to demonstrate that he understands all of this, but refuses the intervention.

Can he do that, legally? Should you leave it at that?

 

**Cases taken from: http://depts.washington.edu/bioethx/topics/consent.html

 


For further investigation (not required):

Epistemic Injustice and Sickle Cell Disease

This ethics session is part of a multidisciplinary session on sickle cell disease. For the ethics portion, begin by listening to this podcast:

https://www.npr.org/2016/02/16/466942135/remembering-anarcha-lucy-and-betsey-the-mothers-of-modern-gynecology 

It is a short podcast but addresses some of the issues of racism and injustice in the clinical context that concern us here. The podcast focuses on Dr. Judd’s poem “In 2006 I Had an Ordeal with Medicine”, which comes from her collection patient. This poem, and the collection overall, articulates her own unjust experience with medicine and helps us to see and feel its connection to a history of like experiences of injustice. We can only summarize here and you can find a bit more on the podcast linked to above, but Judd experienced prolonged suffering with multiple providers as her ovarian torsion was continuously misdiagnosed (as menstrual cramps, as pregnancy, as a bladder infection). She was continuously not believed, not heard, and not treated appropriately, and so disrespected and dehumanized, all the while experiencing significant pain.  This poem (and the collection more fully) interweaves this experience with the advent of gynecology in which enslaved African-American women were experimented on by Dr. Marion Sims (the so-called “father of modern gynecology”). At least three of the women Dr. Sims’ experimented on (Anarcha Wescott, Betsey Harris and Lucy Zimmerman) went through multiple procedures without anesthesia despite it recently being available. We highly recommend (though it is not required) an article in the New York Times, which reveals some of the historic details of these experiments and the forms of torture experienced by the women under Dr. Sims’ supposed care (including the fact that “Sims’ records show that he operated on Anarcha 30 times”).

While we might hope that the experiences of Anarcha, Betsey, and Lucy among so many other African-Americans were not so deeply tied to the experiences of persons of color in contemporary society, Dr. Judd’s experience and work, and this session on sickle cell prove otherwise. We will discuss how palpable and dangerous continued racial bias can be. This bias manifests in health disparities in the multifold ways, only some of which will we be able to address in this session. Black and brown children, teenagers and adults continue to face health disparities even when other social factors are controlled for (e.g. education and income). As Judd says, these ghosts haunt. And it is for this reason among others that we ought remember, honor, understand, and discuss.

Now let’s do some ethics! After listening to the podcast, read this snippet from Miranda Fricker’s Epistemic Injustice (click here)…

Epistemic injustice takes a number of forms.

One example in the healthcare setting is skepticism regarding the testimony of a patient (e.g. because they are overweight or because they use drugs). This can happen in the other direction as well, a healthcare provider may face skepticism from a patient (e.g. because of their race or gender). These are forms of epistemic injustice because one person is unjustly treated as not knowing because of some form of bias.

A second form of epistemic injustice revolves around divulging information. In other words, providers might not give a patient certain information or the patient might not disclose information to providers if the other is not deemed (typically unconsciously) as deserving or capable of knowing. For instance, a provider might focus on telling an overweight patient to lose weight when they could/should also be discussing something like physical therapy (optional: for more on this read: http://www.ijfab.org/blog/2017/11/what-you-dont-know-can-hurt-you-epistemic-injustice-and-conceptually-impoverished-health-promotion/).

Fricker’s conceptualization of epistemic injustice offers one theoretical perspective that is helpful for articulating some of the injustice that occurs in the context of sickle cell disease. This terminology is helpful to both understand some of the injustice that occurs and, more importantly, find the best course of responding to that injustice.

Consider the application of the term epistemic injustice in the following case…

TA (at 20yo) is admitted to the ER for the fifth time this year. He complains of intense pain, which he attributes to an intensive finals week followed by celebrating with friends. He is started on a morphine PCA, which seems to temper the pain for a couple of days, but then on day 3 he requests an increase in his pain meds. He doesn’t think the allotted morphine is doing enough. However, his inpatient team is reluctant to increase the dose of IV morphine, which is already quite high. His current dose could be easily converted to an oral narcotic and managed in the outpatient setting. The inpatient team holds a care meeting with TA and explain their rationale for recommending discharge. They think he should go home on the oral narcotic, where he will be more comfortable and his pain will be more easily controlled through both medical and non-medical means. They council TA that it would be better for him to return home given the benefits of being at home. But TA says that he is not ready for discharge.

Using the Ethics Case Analysis Tool, respond the following questions about this case:

  1. Fill out the 4-Boxes just based on this small snippet (there isn’t a lot of information here, so there will not be a lot in each box, that’s ok).
  2. Name the interactions (or lack thereof) that might reflect a form of epistemic injustice. (e.g. the team may not have demonstrated concern for TA’s pain when he requested an increase in his pain med dosage). 
  3. Name one or more ethical principles or virtues that you think would be important to manifest in our response to TA. (e.g. empathy for TA’s experience of pain)

No matter what we can accomplish in this short session, it is not possible to do justice to the narratives we have considered here and the history we have glimpsed. We hope that the reading and reflecting on the podcast encourages us all to continue to delve deeply into the historical narratives and current lived experiences as you move forward with your education and practice.

Key Ethics Term: Interdependency

The concept of interdependency is most prevalent in care ethics, feminist ethics, virtue ethics, and communitarianism. The idea is that we are not independent but rather interdependent beings in the world. We depend on others when we are young/old, sick, etc., but also in our everyday lives. We would not get along without schools, daycares, public transportation, electricity, and so on. In care ethics and virtue ethics, this is not a feature of humans that is to be overcome, but actually something valuable about our lives. It is not just that we need relationships to survive, but they are also important to meaning and flourishing in the world.

This feature of our humanity can be easy to forget in the clinical setting where patients and clinicians seem removed from the particular relationships that make them who they are and able to live in the world as they do. Sometimes it can make all the difference to recognize both the interdependency of the clinician-patient relationship, but also the other interdependent relationships that can support or impede care. Beginning from a perspective of interdependency might have a more positive effect than thinking in terms of individual independence and rights.


Key Ethics Concept: Communitarianism

The communitarian approach on the values of the community over and above the values of individuals within that community. This approach looks to the particular context, community beliefs, and societal relations to formulate standards of justice and responsibility.

This approach can significantly affect how we make and respect decisions in clinical contexts. Some medical communities may decide not to offer particular therapies to individuals based on the needs of the community. Likewise, some families may decide not to accept particular interventions in light of their community’s resources and values. See the case of Baby Aaron below for a good example of a communitarian ethos.


Ethical Values, Obligations and Virtues in Communities

REVIEW these key ethics terms:

WATCH this video of Carol Gilligan on Moral Development and Care Ethics:

While watching, CONSIDER …

  • What is different about the approach that Gilligan is suggesting (i.e. a relational or Care Ethics based approach) from what you typically think of in terms of your ethical obligations as physicians.

READ Baby Aaron and the Elders by Ellen Wright Clayton and Eric Kodish
.

While reading CONSIDER:

  • How is a communitarian approach being employed by Aaron’s family?
  • How could a communitarian approach guide the response of the medical provider?
  • What would be the primary goal(s) in a Care Ethics based approach to this case? Be specific.
  • How might a Care Ethics approach guide your particular response to baby Aaron’s family? What would it avoid?

Key Ethics Concept: Care Ethics

Care ethics began as a feminist perspective on ethics. Some of its founders (e.g. Carol Gilligan, Nel Noddings and Virginia Held) stressed that traditional ethics neglected roles and values that were stereotypically attributed to women, such as care and empathy.

Care ethics begins from a different metaphysical stance on identity. It conceptualizes humans as fundamentally relational, interdependent, and emotional.

The ethical approach starts from this position of relationality and focuses on the value of creating and sustaining caring relations. Care ethicists sometimes disagree about what this means, but overall the stance is different from other theories insofar as it places our relationships with others as the primary focus of ethical analysis. So, rather than ask ourselves “what are my ethical obligations?” or “what are my ethical duties and rights?”, we instead ask “how can I cultivate caring relationships?”.

In the clinical setting, this approach can change our actions insofar as it asks us to think about our particular relationships first. Think about the case of a “difficult clinician-patient encounter”. Care ethics would ask us to think about how to repair the relationship first and then move towards figuring out the best treatment options. Likewise, in the case of a non-adherent patient, care ethics would ask us to think about what relationships are obstructing adherence and how they might be appropriately changed to best instantiate care.

 


Trustworthiness and Relational Autonomy

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.

(1) Review these key ethics concepts:

  1. Autonomy and Relational Autonomy
  2. Trust and Trustworthiness

**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.**

(2) Then READ:

Stonington SD. Whose Autonomy? JAMA. 2014;312(11):1099-1100. 

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?

(3) REVIEW CASE 1 (you should remember this case from your IPE Session Teamwork and Values)

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): 

“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…