BWH Clinical Ethics Case Review: Giving Everyone a Voice
How Do Power Dynamics Affect Patient and Family Communication With Clinicians?
BWH Clinical Ethics Case Review, a monthly newsletter, is published by the BWH Office of Clinical Ethics. Each issue highlights a BWH case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and BWH Ethics Committee discussion. Please note that because cases are based on actual ethics consultations, some details may have been altered in order to protect patient privacy and confidentiality.
This issue of BWH Clinical Ethics Case Review highlights a case in which power dynamics between clinicians and the patient’s surrogate may have prevented her from sharing important information with the care team.
The patient was an older man with multiple critical medical problems, including dialysis-dependent kidney failure. He was admitted to BWH for an unrelated acute injury requiring specialized care.
During his hospital stay, the patient’s baseline dementia worsened, and he became increasingly anxious and uncooperative with care, frequently yelling at staff as they tried to administer dialysis and impulsively walking away while connected to the equipment. On several occasions, the dialysis catheter became dislodged as a result. Despite ongoing, concerted efforts to keep the patient calm and comfortable, these behaviors proved difficult to manage. The care team convened a family meeting to consider whether dialysis could be safely continued for this patient and, if not, what the goals of care should be.
The meeting was attended by a large multidisciplinary team of clinicians, two ethicists and “Ms. B,” the patient’s health care agent and devoted partner. At the outset of the meeting, Ms. B said her understanding was that the patient would want to continue dialysis. An in-depth discussion of treatment options ensued, during which Ms. B remained mostly silent. After continued conversation and absent further input from Ms. B, the team reached consensus that the harms of attempting dialysis outweighed the benefits, resulting in a recommendation for end-of-life care that focused on comfort.
Ms. B was clearly distressed to hear this but seemed accepting of the plan, asking to care for the patient at home with hospice. The next day she had the patient transferred to another hospital. When a social worker called to follow up several weeks later, Ms. B expressed anger over feeling “pushed” to accept the decision not to offer dialysis. She revealed that the patient was now successfully undergoing dialysis at the other hospital.
A core component of patient-centered care is shared decision-making, in which the clinician and patient collaborate to make medical decisions together. According to this model, each party brings expertise to the table: the clinician shares knowledge about the medical problem and its treatment, and the patient brings knowledge of his or her personal values, needs and concerns.
This “sharing of power” between clinicians and patients ensures that the decision-making process is respectful of and responsive to the patient’s personal preferences and goals. It also allows patients to choose how involved they want to be. Some prefer a less active role, opting to delegate decision-making authority to a trusted relative or friend.
If a patient lacks decisional capacity, the patient’s health care agent or other designated surrogate is called on to exercise “substituted judgment”—to speak for the patient as if the patient were present—thereby ensuring that the patient’s own voice is incorporated into the decision-making process.
When the discussion is about discontinuing a life-sustaining treatment, as was the case here, patient/surrogate input is especially important. It is therefore essential that the patient/surrogate feels comfortable voicing his or her thoughts and feelings. If a power imbalance pervades the discussion, patients/surrogates may be discouraged from speaking up.
The very nature of the relationship between clinicians and patients/surrogates is asymmetrical. This unequal dynamic is a product of clinicians possessing professional status and expertise, and patients/surrogates being reliant on them to provide needed care (Nimmon et al. 2016). Language itself is a medium of power that clinicians wield in a variety of ways (Nimmon et al. 2016). Speaking over others or making definitive clinical judgments can have a silencing effect (Nimmon et al. 2016). The setting and composition of family meetings can also engender feelings of intimidation. These meetings take place at the hospital, where clinicians are more comfortable and often outnumber family members in attendance.
Race, socioeconomic status and health literacy are among other factors that can exacerbate the power differential. For example, African-Americans have reported feeling they do not have “the right” to be involved in health care decisions, are more likely to defer to a physician’s authority and avoid challenging treatment recommendations (Peek et al. 2009). Clinicians may unintentionally reinforce these power dynamics by limiting the health information given to African-American patients/surrogates and being overbearing in their communications (Peek et al. 2009).
Socioeconomic status is another predictor of participation level. According to some studies, less-educated, working-class people are less likely to participate actively in the medical visit (Katz et al. 2006). Low health literacy also has an impact. Inability to understand complex medical terminology and reluctance to ask clarifying questions may inhibit patients/surrogates from offering their opinions (Katz et al. 2006).
By being attuned to the subtle ways that a power differential can affect communication in the family meeting, clinicians can help create an “emotionally safe” space in which patients/surrogates feel supported and empowered to engage in shared decision-making (Peek et al. 2009).
- Offer validation that patient/surrogate perspectives are “heard” and valued.
- Engage in active listening, in which the clinician avoids interrupting, talks less and elicits questions.
- Provide periods of uninterrupted silence to allow for processing important information and associated emotions.
- Use simple language and provide information at the appropriate grade level.
- Encourage the patient/surrogate to bring relatives, friends, spiritual advisors or others for support.
At the BWH Ethics Committee discussion of this case, team members acknowledged that Ms. B seemed overwhelmed and probably did not feel comfortable saying at that time what she expressed later: her strong belief that the patient wanted to live and was not ready to discontinue dialysis. The team talked about other things they could have tried to help the patient tolerate dialysis, such as inviting Ms. B to sit with him for comfort and support; and seeking advice from more outside providers who knew the patient longitudinally. They also recognized the stresses Ms. B faced as a caregiver who was juggling two jobs and her own need for more support.
Katz, M et al. Patient Literacy and Question-asking Behavior During the Medical Encounter: A Mixed-methods Analysis. J Gen Int Med. 2007: 22; 782-786.
Nimmon, L and Stenfors-Hayes, T. The “Handling” of Power in the Physician-Patient Encounter: Perceptions from Experienced Physicians. BMC Medical Education. 2016: 16(114); 1-9.
Peek, M et al. Barriers and Facilitators to Shared Decision-making Among African-Americans with Diabetes, J Gen Int Med. 2009: 24(10); 1135-9.
We welcome your feedback about BWH Clinical Ethics Case Review! Please email your questions and/or comments to BWHEthicsService@partners.org. To learn more about ethics consults, visit the Office of Clinical Ethics website.
This newsletter is primarily intended for internal distribution to BWH clinicians. If you’d like to use this content for another purpose, please contact the BWH Office of Clinical Ethics.
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