By Stacey Kusterbeck
The vast majority of ethics consults are requested by someone on the clinical team. However, some ethics programs encourage patients to contact them directly.
At Memorial Sloan Kettering Cancer Center, ethicists added a “Request Ethics Consultation” button to the electronic patient portal. However, of 74 ethics consult requests made through the portal, just one involved an ethics issue.1 All of the other requests fell outside the purview of the Ethics Consultation Service, such as people wanting help with hospital resources or care coordination. Many consults were requested because the patient or family was frustrated with the clinical team or with the hospital overall.
After less than two years, the “Request Ethics Consultation” functionality was discontinued. Before patients and family are encouraged to engage ethics directly, ethicists must first provide education on their role and what they can help with, the authors concluded.
At Atlantic Health System’s six hospitals, patients or family can request ethics consultations. Ethicists created a brochure entitled, “Bioethics and You: What is the Right Thing to Do?” and made them available at nursing stations and patient/family lounges. The pamphlet explains what the ethics consultation service does, and what kind of concerns ethics can help with. “We have used this brochure for years and have never had a case requested by a patient or family that was inappropriate,” reports Jeanne Kerwin, DMH, HEC-C, a clinical ethics and palliative care consultant.
In a recent case, a patient called for help having a left ventricular assist device (LVAD) deactivated. The LVAD had been placed two years earlier for end-stage heart failure, and the patient previously had asked his cardiac team providers for help deactivating the device. The providers refused to comply, interpreting the request as asking for assisted suicide. “The patient knew that he was not asking for anyone to help him commit ‘suicide.’ Rather, he was asking for help in forgoing the artificial life support that was keeping him alive,” explains Kerwin. During a meeting with ethicists, the patient stated that his quality of life was extremely poor. The patient wished to end his life comfortably, rather than live through the burdens of the LVAD and the predictable complications of the future. It took more than six months for ethicists to achieve a consensus between the patient, family, and cardiac team, to allow the patient to accomplish this goal.
Ultimately, the patient had the LVAD deactivated, with a palliative care plan to keep him comfortable during and after the deactivation. “His request for ethics was instrumental in reaching his goals, supporting the cardiac team regarding their fears, and helping the patient and his family garner the supports (physical and emotional) needed during the process and after his death,” recounts Kerwin. Afterward, ethicists took the opportunity to educate the cardiac team on the obligation to support a patient’s request to withdraw artificial life supports even if the result would be death; and that, from an ethical standpoint, such a request is no different than requests to withdraw ventilator support or to withhold dialysis.
Other, simpler ethics issues are resolved with the patient informally as “curbside” consults. Some family members contact ethics to ask if clinicians can honor evidence of a patient’s wishes when there is no healthcare proxy or surrogate decision-maker (the answer is yes, if the evidence of the patient’s wishes is clear). Such requests take just a few minutes and reassure the family. “There is a need to make ethics consultation services available and visible to patients, their loved ones, and the medical teams,” concludes Kerwin.
At Children’s Minnesota, the clinical ethics consultation service is open to all staff, patients, and families. However, most patients and families do not know what a clinical ethics service is. “There is a knowledge gap that affects patients and families,” says Ian Wolfe, PhD, MA, RN, HEC-C, senior clinical ethicist. The problem is twofold: Patients and families do not know they can request ethics consults and also do not know what ethics can offer.
Rarely, parents contact the ethics service on their own. When it does happen, it usually involves a complaint regarding some aspect of their child’s care. Ethicists refer the family to the appropriate contact — usually a social worker or family liaison. “We have struggled to figure out the best way to make the clinical ethics service known to families,” acknowledges Wolfe. Families already receive large amounts of paperwork upon admission. Ethicists were reluctant to provide yet another handout. Instead, ethicists worked with the Family Advisory Council, and parent members of the Ethics Committee, to get the word out. Ultimately, most families are told about ethics from social workers, nurses, or physicians. “We receive most of our parent/family consults through these sources,” says Wolfe. Most family requested consults focus on decision-making. Families are struggling with how to consider the benefits, burdens, and uncertainty of treatment decisions. “We help families to align their values or apply their thinking to the situation or help them with a framework for how to think about it,” says Wolfe.
Ethicists often meet with parents of neonates in the neonatal or cardiac intensive care units, for example. Those families must choose between limiting interventions with a hospice-focused care plan and going forward with invasive, burdensome treatment with an uncertain outcome. “These are impossible spaces for parents. Ethics consultants can help them find a framework for how to weigh their values with the medical facts,” says Wolfe.
- Blackler L, Scharf AE, Matsoukas K, et al. ‘If you build it, they will come … to the wrong door: Evaluating patient and caregiver-initiated ethics consultations via a patient portal.’ BMJ Health Care Inform 2024;31:e100988.
