Tag Archives: Professionalism

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) OPTIONAL: READ and REFLECT on CASE 1 in preparation for DISCUSSION (you should remember this case from your IPE Session Teamwork and Values)

As you read CONSIDER…

  • What are Doris’ goals and those of the care team? How do they align and how they conflict?
  • How does trustworthiness factor into this case? Might it guide clinicians in some particular way? How so?
  • What does it mean to respect a patient’s autonomy in this case?

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…

  • Dr. Maté’s website: https://drgabormate.com/.
  • Also, we highly recommend watching this TED Talk on addiction and social connection: Everything you think you know about addiction is wrong | Johann Hari

 

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, Havasupai, and HeLa for Health Research Today

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….

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 (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…

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.

  • 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…

Harmon A. Indian Tribe Wins Fight to Limit Research with DNA. New York Times (2010): https://www.nytimes.com/2010/04/22/us/22dna.html

As you read, consider…

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?

Finally, WATCH this TED Talk on the demand for diversity in genetic research and why current research is insufficient: Fox K. Why genetic research must be more diverse. TED Talk, February 2016.

As you’re watching consider…

  • What does Keolu Fox tells us about how medical practitioners and researchers can make research practices more trustworthy and respectful?
  • Can you think of other ways to support these ethical obligations going forward?

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.


For further investigation…

You can see the OHRP Guidance on Research Involving Coded Private Information and Biospecimens: http://www.hhs.gov/ohrp/policy/cdebiol.html.

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.