Survey: Patient and Family Ethical Worries May Go Undetected
Just as clinicians express ethical concerns about cases, the same can be true for patients and families. However, little is known about those ethical questions and how patients or families voice those worries. “Medical ethicists are meant to promote the well-being of patients, and there is a paucity of available information about the ethical concerns of patients and families,” says Marion Danis, MD, and head of the section on ethics and health policy at the National Institutes of Health Clinical Center.
Danis and colleagues surveyed 485 patients and 182 family members receiving inpatient care at five hospitals from 2017 to 2020.1 Participants received a list of scenarios and explained if they had encountered any of them (advance care planning, family disagreements, changing goals to comfort care, limiting life-sustaining treatment, and disagreements with physician recommendations).
Of 468 people who reported experiencing an ethical issue, 64% discussed it with a member of the clinical staff. Instead of relying on patients or families to report ethical concerns on their own, clinicians could take a proactive approach. “Clinicians might anticipate that ethical concerns will arise, and provide opportunities for discussion,” Danis suggests.
Clinicians can ask an open-ended question, such as: “Do you have any concerns that you would like to talk about that we haven’t had a chance to address already?”
Of respondents who had talked with a clinician about an ethical concern, 77% found the discussion helpful. Most of those respondents indicated they received helpful information that answered their questions or explained their options.
Some respondents indicated the discussions were not helpful because the provider did not listen, did not communicate clearly, did not provide helpful information, lacked empathy, was dismissive, or was not knowledgeable or experienced. For at least some of those cases, an ethics consult probably would have been a good idea.
“Ethics consults would be helpful when an ethical concern is not resolved by a clinician — or, when a situation involves a conflict among parties that might require some mediation,” Danis offers.
According to Ana S. Iltis, PhD, director of the Center for Bioethics, Health, and Society at Wake Forest University, “there is plenty of evidence that patients and families have ethical concerns.”
Such concerns may involve discharge planning, issues that arise during labor and delivery, and many others.2,3 At some hospitals, families want support from ethicists but cannot access it.
“Anecdotal evidence suggests that many people do not know that this service is available, or how to reach it,” Iltis shares.
Iltis is aware of multiple cases in which a patient tried to request an ethics consultation, but was informed that only an attending physician could make the request.
“While this might not have been institutional policy, if the culture is such that only attendings may request consults, then patients as well as other clinicians are at a serious disadvantage,” Iltis says.
Jordan Potter, PhD, HEC-C, director of ethics at Community Health Network in Indianapolis, has seen ethics consults be helpful to patients and families in these situations:
• if patients or family members believe they are not “heard” or understood by the medical team;
• if there are differing opinions among family members on what is the best decision for the patient;
• if there are questions about the appropriateness of a surrogate decision-maker.
“Usually, this concern is brought up if the surrogate was estranged from the patient, or they didn’t have a good relationship,” Potter says.
For example, if a patient’s sole adult child is estranged from the parent, and the patient’s sister has been taking care of the patient, most state surrogate decision-making laws still would put the adult child as the default surrogate (assuming there is no advance directive or power of attorney, guardian, or spouse). Yet the adult child in this scenario has less knowledge of the patient’s healthcare preferences and values than the sister.
Sometimes, the issue is that the status of the patient’s legal relationship with the surrogate has changed, due to being previously married and now legally separated.
Another problem is when the surrogate decision-maker is not making decisions reflecting the patient’s known wishes or best interest. “This scenario has become increasingly common, and can unfold in various ways, leading to ethical concerns and distress amongst other members of the family,” Potter says.
For patients who have lost decision-making capacity, the surrogate decision-maker may disregard an advance directive or fail to use a substituted judgment standard when making medical decisions for the patient.
What if patients feel pressure from certain healthcare providers to pursue a specific treatment plan that is not aligned with the patient’s stated preferences and wishes? Ethicists can ensure the medical team is not acting paternalistically, and is appropriately respecting the patient’s right to make medical decisions.
Ethics consult requests often are completed by the nursing staff on behalf of a patient or family. However, Potter has seen a few cases in which a patient or family member contacted the ethics service directly after finding contact information online. This is more likely if ethics services are highly visible on websites, flyers, or patient materials.
In some cases, ethics concerns reported by patients or family are misunderstood as complaints about healthcare providers. “This leads to many ethical concerns by patients and families going unnoticed and unaddressed,” Potter says.
For example, a patient with decision-making capacity may request a reasonable treatment alternative that aligns with the patient’s values, but the physician is not honoring the request. If the patient brings this up with a nurse, it might appear to be more of a complaint about the physician’s communication style than a genuine ethical concern about decision-making rights. Direct involvement of ethicists would be ideal in such cases.
“One of the most fundamental tasks of an ethics consult is clarifying what the ethical dilemma and concern is,” Potter says.
Finally, if patients are ready to proceed with a palliative-focused treatment plan, they might feel pressured by family members to continue an aggressive treatment plan. “An ethics consult can help to ensure that the patient’s wishes and values are appropriately respected and honored,” Potter suggests.
1. Noorulhuda M, Grady C, Wakim P, et al. Communication of patients’ and family members’ ethical concerns to their healthcare providers. BMC Med Ethics 2023;24:56.
2. Pendo E. Ethical challenges in discharge planning: Stories from patients. Narrat Inq Bioeth 2020;10:183-186.
3. Morrell E, Johnson N, Echegaray L, et al. Narrative symposium: Challenges with care during labor and delivery. Narrat Inq Bioeth 2017;7:182-E6.
Some respondents indicated a provider did not listen, did not communicate clearly, did not provide helpful information, lacked empathy, was dismissive, or was not knowledgeable or experienced. For at least some of those cases, an ethics consult probably would have been a good idea.
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