Patients Can Request Ethics Consults, But Almost None Do
Almost always, it is clinicians (not patients) who call an ethics consult. “The reasons for the small number of patient- and family-initiated consults are multifactorial. This is something our team has spent considerable time thinking about,” says Liz Blackler, MBE, LCSW-R, program manager of New York City-based Memorial Sloan Kettering Cancer Center’s ethics committee.
In a recently published paper, Blackler and colleagues reported if patients are empowered to ask for ethics consults, it can mean more patient-centered care, better shared decision-making, and a stronger patient/physician relationship.1 “Many patients and families face ethical dilemmas, but, unfortunately, do not have a frame of reference for bioethics or a practical understanding of their availability, means of access, utility, and potential benefit,” Blackler observes.
Power imbalances between patients/families and the healthcare team are one obstacle. Some patients and families with ethical concerns worry about receiving a “disrespectful” or “difficult” label. “They are also worried about potential repercussions for speaking up or expressing contrarian viewpoints,” Blackler says.
Patients also might be concerned they will have to pay for an ethics consult out of pocket. “Patients and families are charged for many supportive services, such as counseling or psychiatry,” Blackler notes. “They may not realize that ethics consultations are free of charge.”
At the vast majority of healthcare organizations, anyone can call an ethics consult. This includes patients and families. “Therefore, bioethicists have an obligation to educate patients and family about the clinical ethics consultation process, [including] its value and its limitations,” Blackler says.
It is possible patients might request an ethics consult instead of directly engaging with clinicians. That is a valid concern — but it also presents an opportunity “for the consultant to initiate, facilitate, and hopefully enhance communication between parties,” Blackler offers.
About 250 ethics consults are conducted annually at Western Michigan University Homer Stryker M.D. School of Medicine, covering about 750 beds between the two main hospitals. Of those, only five or 10 are requested by a patient or family member.
“When they do call us, often it’s from the hospital bed. The patient has some sort of grievance with the medical staff and feels disempowered,” says Parker Crutchfield, PhD, an associate professor in the department of medical ethics, humanities, and law.
Patients are unhappy about something, and tell their nurse or doctor they want to talk to someone else. A clinician recommends calling ethics. Initially, most patients think ethicists are on the hospital’s side. “Maybe at some institutions that is the case. But we are essentially a third-party, independent consultant. We try to make that clear, that we are on no one’s side and that we are on the side of preventing harm, whatever that amounts to,” Crutchfield explains.
Some patients ask for a consult if they want a specific treatment and the medical staff refuses to provide it, based on the fact the risks outweigh the benefits. Often, recommendations from ethics do end up endorsing the medical staff or hospital position just because it is the reasonable thing to do. “The outcome is almost never what the patient or family wants,” Crutchfield says.
Certain patients contact ethics because they want help filing a grievance with the hospital. “They have the attitude, ‘Something wrong is being done, and these people will come in and save me,’” Crutchfield notes.
Ethicists explain their role as a neutral third party. They are clear that the goal is not to exact retribution against a clinician the patient thinks is doing something wrong.
Rarely is there a genuine ethical conflict when a patient calls ethics. “But that is true of all consults. We get consult requests all the time that are not ethics-related,” Crutchfield reports.
Ethicists direct patients to relevant services, whether it is risk management, probate court, social services, or another area of the hospital. Ethicists also receive calls when there is a misunderstanding, either on the part of the patient or the medical staff. Even though there is no specific ethics question in these cases, ethicists still offer assistance. “Because of our expertise in facilitating communication or clarifying morally relevant statements, ethicists can often be of help,” Crutchfield says.
In one recent case, a patient objected to someone using an outdated expression the patient found offensive. Other patients called ethics to report discrimination based on race, religion, ethnicity, or gender. In any case, if things have gotten to the point where the patient has called ethics for help, the patient/physician relationship has deteriorated to the point of adversarial. “Often, there’s not anything we do to repair that,” Crutchfield laments. “But we have expertise in communicating in a way that takes conflict down a notch. That’s something we do all the time in clinical ethics.”
REFERENCE
- Blackler L, Scharf AE, Matsoukas K, et al. Call to action: Empowering patients and families to initiate clinical ethics consultations. J Med Ethics 2021 Nov 3;medethics-2021-107426. doi: 10.1136/medethics-2021-107426. [Online ahead of print].
In a recently published paper, the authors reported if patients are empowered to ask for ethics consults, it can mean more patient-centered care, better shared decision-making, and a stronger patient/physician relationship.
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