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.
**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.**
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?
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):
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.
1. Articulate the ethical issues that arise in the determination of brain death
2. Identify and discuss physicians’ ethical and professional duties when, due to religious, cultural or other reasons, a patient’s family does not recognize brain death and insists on continued medical intervention after declaration of brain death
3. Identify and discuss physicians’ ethical and professional responsibilities when, due to religious, cultural or other reasons, medical providers or medical institutions insist on continued medical intervention after declaration of brain death
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 our cultural norms and ascriptions might affect our ethical judgments and reasoning. Note the discrepancy between our use of ‘cultural’ ascriptions to patients and to the medical profession.
16-year-old girl with a history of depression and ADHD who presents with coma. She 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. She 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 loses all brainstem reflexes, an apnea test is performed. It confirms the absence of a respiratory drive when the patient is allowed to accumulate CO2 without artificial ventilation. A second brain death examination is needed per institutional policy, and is performed 24 hours later, confirming whole brain death.
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.
The neurologist explains that she has died and asks if they would like to have time with her before the ventilator is removed. Her dad replies, “She’s warm. Her heart is beating. She’s breathing. She’s not dead. We want a second opinion. 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.”
While some religious traditions do not recognize brain death, her 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 her body and say they will not let anyone ‘stop any of the machines’.
*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)?
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 (e.g. language barriers) or be capable (e.g. severe cognitive impairments or disabilities). But many patients with cognitive impairments or who face disabling conditions 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.
Respectfulness is a kind of virtue, which can be broadly understood as a trait of character in which one recognizes, assumes, or even promotes the moral worth of others. A respectful person consistently and reliably treats others as “ends in themselves” (to use Kant’s language) or valuable in their own right. This can come in a number of different forms. While we commonly think of respect in bioethics in relation to respect for autonomy, we can also be respectful of person’s beliefs, emotions, relationships, etc. Thus, while ‘respect for autonomy’ is an integral principle in bioethics, we must also think more broadly about how to be respectful in the clinical setting.
Empathy is about knowing or understanding how another person feels. Unlike sympathy (feeling badly for another), or emotional sharing (sharing in an emotion with another), they key is that we come to some understanding of how another person feels in their own shoes (i.e. NOT how you would feel in another person’s shoes aka “perspective taking”).
Empathy is controversial. Some argue it isn’t possible or that it requires too much of us (e.g. is overburdensome in the clinical context). Others worry about its tendency to rely on stereotypes (e.g. greater accuracy with ‘in-groups’) or the potential for false/paternalistic empathy (e.g. a failure to ask another but just assume to know how they feel). However, the medical profession also relies on empathy for two important reasons:
When appropriately sensitive and responsive, it can lead to knowledge about how a patient feels that can be critical to medical care.
When appropriately sensitive and responsive, empathic engagement, on its own, manifests respect for the patient and can be critical to building a trusting relationship.
The term ‘value’ distinguishes descriptive statements/beliefs (e.g. the world is spherical) from normative statements (e.g. clinicians ought/should be compassionate). In the latter case we are making evaluative judgments or calling something good/bad.
Sometimes we take value to be intrinsic (e.g. we might say happiness is valuable in itself, not for some other goal), and sometimes we take value to be extrinsic (e.g. when we say x job is good because it pays well, or e.g. empathy is good because it helps patients heal more quickly).
We can also say that value is subjective or objective. For instance, wealth may be a subjective value that one person holds but not another (the value is relative to the subject/person). Whereas, we might say that compassion is objectively valuable because we all agree to its value, or because there is evidence that it makes persons and communities live well/ flourish, or because it is dictated by religious text, etc. (though some might disagree about whether compassion is an objective value, or whether anything can have objective value).