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 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, wealth, etc.). As Judd says, these ghosts haunt us. And it is for this reason among others that we ought remember, honor, understand, and discuss.
After listening to the podcast, read this snippet from Miranda Fricker’s Epistemic Injustice:
Link to book section here…
Fricker offers one theoretical perspective that is helpful for conceptualizing and articulating some of the injustice that occurs in the context of sickle cell disease. This terminology, i.e. epistemic injustice, is helpful to both understand some of the injustice that occurs and, more importantly, find the best course of respondingto that injustice. Consider the application of the term epistemic injutice in the following case…
No matter what we can accomplish in an 80 minute session, it is not possible to do justice to these lived experiences and this history. We hope that reading and reflecting on this podcast encourages you all to continue to delve deeply into these experiences and this history as you move forward with your education and practice.
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.
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.
**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 (e.g. human rights) in Week 4 of EHM. Likewise, we will come back to system level methods of advocacy (including advocacy for clinicians with underrepresented minority identities) in later weeks. Here, our intention is to start thinking creatively about how to build relationships with and advocate for patients.**
(2) Then, WATCH this TED Talk by philosopher Onora O’Neill on trust and trustworthiness…
As you’re watching, consider the following:
What kinds of vulnerabilities in the healthcare setting might cause one to be perceived as untrustworthy despite having a trustworthy character?
What are the distinctive responsibilities of clinicians to overcome bias in trusting their patients and achieve trustworthiness in their relationships with patients?
the concepts of autonomy and trust when the patient/family/physician may have different perspectives about the best course of action.
How do you think building trustworthiness relates to promoting patient autonomy?
(4) APPLY what you have learned so far by reflecting briefly on CASE 1…
ID / HPI: Beatrice is a 84 year old woman who was admitted to the hospital with a new diagnosis of tracheal cancer. She had been experiencing increasing shortness of breath at home for the past 2 months, but she had been avoiding the doctor. This shortness of breath got acutely worse 2 weeks ago and her friends at church convinced her to call 911. In the emergency department, she was found to have a large obstructing lesion on her trachea. She was taken for an emergent tracheotomy (incision in the anterior aspect of the neck directly into the trachea), and a biopsy of the tracheal mass, which came back positive for tracheal cancer. She was admitted to the hospital for surgical recovery. She continues to have a large amount of upper airway secretions that require suctioning deep inside the tracheostomy hole (otherwise they block her airway and prevent her breathing well). The suctioning has been done by respiratory therapy – Beatrice has not been able to do her own suctioning independently. When she has a large amount of secretions, she has respiratory distress and her oxygen level drops, requiring urgent suctioning and attention from multiple nurses, respiratory therapists, and members of her physician team. This has happened at least every other day since admission. The surgeons think the secretions may persist for weeks to months, and are related to the cancer.
Past Medical History: Moderate chronic obstructive pulmonary disease (COPD), stable. Diabetes mellitus type 2 , controlled with diet. Mild memory impairment (forgetful in the past few years with names)
Functional status: Stopped driving due to vision and her concern about memory. Managing her own bills and household, does her own cooking, cleaning, and other house chores. Has had a caregiver through state funding in the past to help with occasional grocery shopping.
Social History: Beatrice lives independently in a 1 level house out in the country, and has done so proudly since her husband died 9 years ago. She has no other family or friends who are able to support her 24 hours a day, or who are available to take her to prolonged treatments. Beatrice has 2 cats that she adores – her neighbor (who is also elderly) is caring for them right now – and they are a big reason she wants to go home.
Treatment options: Doctors feel that she is not a good candidate for cancer resection by laryngectomy; they recommended outpatient radiation therapy (daily for 6 weeks, 90 minutes per session) which may extend her life by several months. Without either of these, they estimate she will live 6-9 months, if she has good secretion management. Without good secretion management, she may have respiratory arrest due to the secretions blocking her airway or develop pneumonia. Members of the medical team think Beatrice needs to go to a nursing facility because they don’t think she can manage to do suctioning of her secretions on her own. There is some concern that she could die suddenly even on transport home because of trouble with secretion management. There is no option (that she can afford) that offers 24 hour home care.
Beatrice’s goals: Beatrice wants to go home ASAP and be in her own house. She declines a nursing facility or rehab facility under any circumstance. She is amenable to having suction equipment and oxygen delivered to her house. She doesn’t see how she could make radiation therapy happen. She states “I would rather die at home than sit in this hospital or go to a nursing home. That is no life.” She is able to clearly state her diagnosis, the recommendations of the medical team that she go to a skilled facility for respiratory management, and the risks, benefits, and consequences of going to a skilled facility vs. going home.
In class, we will use the Ethics Toolkit to work through the ethical analysis of the case. We will then have a large group discussion about Beatrice’s goals and those of the care team, and will wrestle with how they align and how they conflict. We will consider the concept of ‘first do no harm’ and how that applies in this case.
(5) Now WATCH this short clip from Dr. Gabor Maté…
And this TED Talk by Johann Hari…
After watching these talks, reflect on the case of Moira below…
(6) Finally, in light of what you’ve learned above, read and reflect on Case 2:
Moira is a 28yr old woman with two children (7 and 9yrs old). She has a history of endocarditis and has been admitted for volume overload. She has been admitted several times over the past 6 years and has already received multiple surgical interventions (including two valve replacements). Her endocarditis is exacerbated by ongoing IV drug use. While she is consistently open about her drug use and desire to stop, she continues to use. Each time, staff have been surprised by her ability to recover from surgery, but also frustrated by each new admission. She is currently being considered for a third valve replacement.
Moira alternates between passive acceptance of her care and anger at staff. She will sometimes knock food off her tray 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 often waits until the father is present to conference with the patient. But 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 medical team disagrees about whether or not to offer the valve 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 is reluctant to do another valve replacement, the resident believes that she is a sufficiently good candidate medically.
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 another valve replacement?
In small groups, we will first use the Ethics Toolkit to work through the ethical analysis of the case, and then will run a mock family meeting to explore Moira’s goals and obstacles / challenges to her health and care.
These two articles help us to see how both patients and clinicians participate in and value cultural norms. Note the discrepancy between our use of ‘cultural’ ascriptions to patients and to the medical profession.
These two articles discuss the ethics terms above in greater detail and help us to apply them in the case of brain death. As you read these articles, consider how the first articles on cultural norms and ascriptions night affect our ethical judgments and reasoning.
J is a 16-year-old girl with a history of depression and ADHD who presents with coma. J was diagnosed with depression when she was 13 and had never attempted suicide before. Her parents are divorced and barely on speaking terms. She was at her mother’s place, talked to her father on the phone, who sent her grandparents to get her from her mother’s place. J had gotten into an argument with her mother about playing a video game. She was then found hung with a taekwondo belt around her neck tied to the bedpost. CPR was initiated by the mother. EMS found her to be in PEA arrest. She was given epinephrine. Circulation returned, but she was thereafter non-responsive. She was intubated and transferred to the ICU for care.
Over the next two days, she does not respond to painful stimuli or voice; does not grimace to pain; has no gag reflex; has no limb movements to pain; pupils are fixed and dilated; no spontaneous respirations; no volitional activity.
After she lost all brainstem reflexes, an apnea test was performed. It was positive and confirmed the absence of a respiratory drive when the patient is allowed to accumulate CO2 when not providing artificial ventilation.
The patient’s physicians in the ICU, palliative care, and neurology teams have been preparing the mother and father and their families for this possibility.
J’s family members, like most in this situation, feel like they’re in the midst of a terrible nightmare.How could J be playing board games with her brother three days ago and be dead now? Her mother is in despair, thinking their argument prompted this tragedy. Her brother is taciturn and has not slept since J was admitted.He is angry, afraid, and misses his sister.J’s father vacillates between grieving and blaming her mother.All of them keep hoping and praying for her recovery.
Two days after admission, the neurologist explains that J has died and asks if they would like to have time with her before the ventilator is removed. J’s dad replies, “She’s warm. Her heart is beating. She’s breathing. She’s not dead. There must be more tests you can do. She’s in there somewhere. As long as she’s breathing, her soul has not left her body.” And J’s Mom asks for a second opinion. She insists, “we need more time. This can’t be happening. I won’t give up on her.”
While some religious traditions do not recognize brain death, J’s family simply genuinely believes she is not dead.In their view, withdrawing the ventilator would cause her death, so when the time comes to extubate, they throw themselves over J’s body and say they will not let anyone ‘stop any of the machines’.
J’s medical team feels compassion for her family and wants to give them time, but also does not want to confuse the family by acting as though J is still alive.A colleague provides a second opinion and confirms brain death.J’s family requests another opinion and further tests. The medical team does not think it would be right to order tests for a dead person.
*Pulseless electrical activity or PEA refers to a clinical diagnosis of cardiac arrest in which a heart rhythm is observed on the electrocardiogram that should be producing a pulse, but is not.
What might hamper the clinician-patient/family relationships in this case?
How ought healthcare providers respond to this situation? What steps should they take and why (use the concepts of relational autonomy, beneficence/non-maleficence, virtue, etc. to guide you)?
What rights do patients and families have in this situation? How ought they be respected?
What rights do health care providers have in this situation?How would you recommend they exercise them?
CASE 2: Marlise Munoz:
“Marlise Muñoz was 33 years old and the mother of a 15-month-old when she collapsed on November 26, 2013, from what was later determined to be a massive pulmonary embolism. Initially described as apneic but alive, she was brought to the county hospital where her family was soon told that she was brain dead. Ms. Muñoz and her husband, both emergency medical technicians (EMTs), had discussed their feelings about such situations. So Erik Muñoz felt confident in asserting that his wife would not want continued support. Her other family members agreed, and they requested withdrawal of ventilation and other measures sustaining her body’s function.
In most circumstances, this tragic case would have ended there, but Marlise was 14 weeks pregnant and lived in Fort Worth, Texas. Texas law states that a “person may not withhold cardiopulmonary resuscitation or certain other life-sustaining treatment designated . . . under this subchapter (the Texas advance directive law) . . . from a person known . . . to be pregnant.”1 The hospital caring for Ms. Muñoz interpreted this exception as compelling them to provide continued support and declined the family’s request to end such interventions. The attorney representing the hospital indicated that the law was meant to “protect the unborn child against the wishes of a decision maker who would terminate the child’s life along with the mother’s.” After weeks of discussion and media attention with the hospital remaining intransigent, Mr. Muñoz sued in state court to have his wife’s and family’s wishes respected.”
Trust and the virtue of trustworthiness are integral to the moral life. At a very basic level, society requires trust to function (e.g. what if you couldn’t trust your bank to hold your money?, or e.g. what if you couldn’t trust that teachers were doing their best to provide accurate information?, or e.g. what if you couldn’t trust your doctors to keep their interactions with you confidential?). In order to survive and flourish with those around us, we must be able to trust each other.
It is important to note that trust also makes us vulnerable. To trust in another is to make oneself vulnerable to that person or system. This point is a key feature of patient care. Physicians depend on patient’s to trust them in their care for them to be successful. Likewise, patients depend on physicians not to abuse their trust. When physicians and patients are able to engage in trusting relationships and be trustworthy, we have a better chance of enhancing the wellbeing of the patient, the physician, and the relationship.
Relations of trust are also vulnerable to social norms and history. Norms that categorize a particular population as not trustworthy can affect patient care and pose significant challenges to clinician-patient relationships. For instance, it is common for clinicians to distrust the demands of patients with Sickle Cell Disease, particularly by doubting the validity of their requests for stronger pain medications in a crisis. This mistrust is tied up in social perception of opioids as well as the visible identity of being black (as many sickle cell patients are). So, when building trust and trustworthiness in relations with patients, we must acknowledge how social norms and history can affect those efforts.
“Medical futility” refers to interventions that are unlikely to produce any significant benefit for the patient.” (Jecker, Ethics in Medicine Website, UWSOM)
But the meaning of ‘benefit’ can be difficult to determine in a particular case. For some patients, for instance, quantity of life will matter more than quality of life. There will be instances when clinicians may feel a treatment does not offer benefit even if it does extend life in the short term, while the patient may feel that any extension in quantity (even if only days or hours) is a benefit. Likewise, there may be times when clinicians disagree among themselves as to whether a treatment is medically feasible or beneficent. Herein lies the conflict.
The term ‘medical futility’ is complicated by the normative valence of ‘futile’, which can have negative connotations and consequences for patients and families. For this reason, many prefer the terminology ‘not medically feasible or beneficent’ to ‘medically futile’.
When patients are lacking in decisional capacity, we depend on others to make decisions for them. This surrogate decision maker may be formally appointed by the patient (e.g. through durable power of attorney or DPOA), may be a legal next of kin (LNOK) as defined by the state, or (in absence of the former options) a guardian appointed by the state.
Surrogate decision makers are expected to make decisions for the patient using a (1) substituted judgment standard (i.e. deciding as the patient would under the circumstances, e.g. did the patient ever talk about not wanting to be on a ventilator?) or (2) best interest standard (i.e. deciding according to what seems to be in the best interests of the patient based on what we know about the patient, e.g. does an intervention provide reasonable benefit and minimal risk based on the patient’s circumstances?).
Decisional capacity is decision specific (e.g. one might be able to choose what one wants for lunch but not whether or not a surgical interventions is appropriate) and it can wax/wane over time (e.g. directly following TBI I may not have decisional capacity, but may regain it over time).
Decisional capacity depends on the following (Applebaum 2007):
ability to communicate a choice
ability to understand the relevant information
ability to appreciate consequences
ability to reason about treatment choices.
Decisional capacity also comes in degrees and requires support. A number of things can affect one’s ability to demonstrate capacity or be capable (e.g. language barriers, fear of medical professionals, depression, etc.). But many patients with internal or external impairments that affect decisional capacity in the above regards can be capable with sufficient support. This is often called supported decision making and is growing formal legal support/actualization across the country.