Tag Archives: Professionalism

Trustworthiness and Relational Autonomy

(1) Review these key ethics concepts:

  1. Autonomy and Relational Autonomy
  2. Virtue
  3. 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 (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?

(3) Then READ:

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

As you are reading, consider…

  • 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. 

For further investigation on addiction, see Dr. Maté’s website: https://drgabormate.com/.

Values to Norms

What makes a good community?  What values do communities hold? In thinking about building and enriching our own medical school community, and working together to establish some ‘norms’ of how we would like to engage, it is helpful to look for lessons from other academic communities.

The concept of a community agreement in higher education was advanced by the work of Earnest Boyer and other researchers and published in their report Campus Life: In Search of Community in 1990, funded by the Carnegie Foundation for the Advancement of Teaching. In their study, Boyer and colleagues identified six characteristics that define a positive academic community:

Boyer’s Principles of Community 

Purposeful 

A college is an educationally purposeful community, a place where faculty and students share academic goals and work together to strengthen teaching and learning on the campus

Open 

A college is an open community, a place where freedom of expression is uncompromisingly protected and where civility is powerfully affirmed.

Just 

A college is a just community, a place where the sacredness of the person is honored and where diversity is aggressively pursued.

Disciplined 

A college is a disciplined community, a place where individuals accept their obligations to the group and where well-defined governance procedures guide behavior for the common good.

Caring 

A college is a caring community, a place where the well-being of each member is sensitively supported and where service to others is encouraged.

Celebrative 

A college is a celebrative community, one in which the heritage of the institution is remembered and where rituals affirming both tradition and change are widely shared.

Taken from Ernest L. Boyer’s Campus Life: In Search of Community, 1990

Lessons from Tuskegee and HeLa for Today

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

Start by reviewing the Ethics Case Analysis Toolkit

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

Read this seminal article on the Tuskegee Syphilis study, which explores how racism impinges on research in a myriad of ways…

Allan M. Brandt. 1978. Racism and research: The case of the Tuskegee Syphilis study. The Hastings Center Report 8(6): 21-29. https://dash.harvard.edu/bitstream/handle/1/3372911/brandt_racism.pdf?sequence=1

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.

  • Were the research subjects harmed or otherwise treated unjustly? How so? For instance, what obligations or rights were violated? Which virtues were neglected or failed?
  • What is your assessment of this reasoning? How would you characterize the researchers justification? Were they referencing rules, rights, responsibilities, harms/benefits assessments?
  • Can you imagine similar reasoning being used now, with other studies, other participants? What is at stake with this line of reasoning? What are other, counter-arguments you could use? In your analysis, refer to rules, principles, or benefit/risk assessments.

 

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

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

As you’re reading, consider the following:

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

  • Was Mrs. Lacks harmed? Why or why not? How so?
  • Was the Lacks family harmed? Why or why not? How so?
  • 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?

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