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.
**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.
Consider:
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.”
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?
If you’re eager for more, here is a section of Siegler and Winslade’s Clinical Ethics that overviews the different ethical considerations in Brain Death.
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.
Metacognition: Thinking about thinking; Knowing about knowing; Being aware of your awareness.
It is a self-regulatory process that monitors and evaluates your own cognitive processes.
Metacognitive practices help you identify your own strengths, weakness and limitations so that you can identify strategies to expand your knowledge or skill level.
Reflection is a metacognitive process that occurs before, during and after situations with the purpose of developing greater understanding of both the self and the situation so that future encounters with the situation are informed from previous encounters. (Sandars, 2009)
We do not learn from our experiences by simply having them.
Reflection on action allows us to gain understanding and learning from the experiences we have had.
The Adult Learning Cycle by Kolb (1984) is one way to conceptualize the steps we take to learn from our experiences. Reflection on action is a key piece.
You reflect back on that experience. You may identify actions you took or reactions you had and the consequences or outcomes.
You analyze and try to understand why you took those actions and/or where the reactions came. You hypothesize about how they led to the consequences. You think about how you may apply these concepts to other situations and identify any learning needs you may have to close a gap in your knowledge or skills.
You plan how what you will do next time you are in a similar situation based on your conclusions from Stage 3.
Example 1:
You take an exam assessing your knowledge of cardiovascular drugs and receive a score below what you expected.
You reflect on your study strategy which included making flash cards to test yourself on the mechanism of action, half-life and side effects of each medication. The test, however, required you to select appropriate drugs based on clinical scenarios.
While you are confident with the pharmacokinetics and the mechanism of action of the medications you think you might not have gained a deeper understanding of the down stream effects on the patient’s physiology. You think that understanding drugs at this level will likely be applicable to other systems, as well.
You make a plan that next time you lean about a drug you will consider how the medication will affect physiology and what the down stream effects may be. You will also identify clinical problems that would be treated or managed by these effects.
Example 2:
You are taking a history from a teenage girl. During the social history portion, you ask her if she has a boyfriend. She crosses her arms, becomes quiet and participates minimally in the rest of the interview.
You reflect on the conversation and identify that her behavior and engagement changed when you asked her about the boyfriend. You also recalled that you did not inquire whether she had romantic or sexual relationships with females and wonder if she felt isolated or judged after asking only about male “boyfriend-type” relationships.
You hypothesize that some people may feel uncomfortable answering closed ended questions with limited presented options. You consider that you may be applying your own or other societal norms to your questions that may feel alienating to the patient.
You make a plan that next time you are taking a social history, you ask open-ended questions when inquiring about sexual orientation, gender identity, relationships and family structure.
Practical Tips
Consider implementing a self-reflection process into your educational routine.
One quick method is using the Plus-Minus-Delta model. After an experience, ask yourself 3 questions: 1. What went well? (Knowledge, behavior or skill) 2. What could be improved upon? 3. What will I do differently next time?
To gain a deeper understanding add a “Why?” between each step.
Supplemental Reading:
Sandars J. The use of reflection in medical education: AMEE Guide No. 44. Medical Teacher. 2009;31:685-695.
Other references:
Kolb, D. A. (1984). Experiential learning: Experience as the source of learning and development (Vol. 1). Englewood Cliffs, NJ: Prentice-Hall.
“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’.
