A decisionally capable patient is diagnosed with a curable form of cancer, but refuses the recommended surgery. In frustration, the clinical team calls in ethics — to convince the patient to consent.
“This, of course, is not in line with how ethicists practice,” says Andria Bianchi, PhD, a bioethicist at University Health Network in Toronto. This common scenario stems from a mistaken belief: That the primary role of ethicists is to convince patients, families, or surrogates to follow a recommendation. Bianchi suggests ethicists respond to such requests by explaining how they can be of help in the situation:
• Act as a mediator between the two parties.
“One of the roles of an ethicist is to offer clinical ethics consultation and mediation when ethical dilemmas arise, while remaining as neutral as possible,” notes Bianchi.
• Learn more about the patient’s perspective.
“An ethicist may help to unpack the patient’s decision,” says Bianchi. This gives the patient the opportunity to ask questions and explore alternative options, all with the goal of making a truly informed decision.
• Find out why clinicians want to pressure the patient.
A surgeon may not comprehend why the patient is refusing surgery, believing it is highly likely to be curative. “Understanding and validating their distress is often an important first step,” says Bianchi.
• Educate clinicians on the patient’s right to make an informed decision.
“The ethicist can help maintain an environment conducive to informed decision-making,” says Bianchi.
• Participate in any debriefs that occur.
This can help regardless of whether the patient decides to consent. “It provides a forum for the clinical team and any other parties to express their feelings about the case and explore any lessons learned,” says Bianchi.
This is the perfect time to offer an ethics education session. “The clinical team will know what to expect when they decide to involve ethics in the future,” says Bianchi. For ethicists, it’s an opportunity to explain their role.
Clinicians often are surprised to learn that, in fact, ethicists are not the ones who make the final decisions on ethically complex situations. Bianchi explains it to clinicians this way: “While ethicists do contribute to decision-making processes, they do not make decisions on behalf of patients, families, organizations, or clinical teams.”
For example, the clinical team might be trying to figure out if they should implement an opt-out policy to specify staff who do not want to participate in medical assistance in dying. “In this scenario, the ethicist would probably clarify that the decision is ultimately up to the person in charge of the clinical team,” says Bianchi. The ethicist is not the one making the decision, but can still offer insights on possible approaches. “This enables the decision-maker to make an informed choice about how to proceed, based on their specific circumstance,” says Bianchi.
Time for Self-reflection
Has an ethicist ever tried to convince a patient to follow clinical recommendations in the past? If so, it’s no surprise that clinicians expect it.
“The first thing to consider is whether the ethics consultants might possibly have contributed to that misconception,” says Charity Scott, JD, MSCM, Catherine C. Henson professor of law at Georgia State University College of Law in Atlanta.
If asked to convince a patient to consent to surgery, ethicists should “engage in thoughtful self-reflection on its possible contribution to those misunderstandings,” says Scott.
The way ethicists approach consults varies. “Some ethicists believe their role is to make ethical recommendations and are willing to take positions,” says Scott. These ethicists willingly take sides on the rightness or wrongness of a particular course of action. Other ethicists remain neutral, with a focus on conflict resolution. Given these differences, says Scott, “it’s no surprise if there is misunderstanding about the ethics role.”
Is there more than one ethically acceptable option? If so, ethicists should avoid making a specific recommendation, says Scott.
“One key reason to avoid taking sides is to avoid usurping the decision-making power of the legally appropriate decision-maker,” says Scott.
Finding out how previous consults contributed to misunderstandings on the ethics role can shed light on inconsistent approaches. “This investigation will take diplomatic questioning of clinicians, patients, and families,” says Scott.
There may be a discrepancy between the ethics service’s philosophical views of its role and what people are actually experiencing. If so, says Scott, it should be acknowledged openly.
“Formal education may be needed to ensure members of the ethics service are all on the same philosophical and operational page going forward,” says Scott.
• Andria Bianchi, PhD, Clinician-Scientist/Bioethicist, University Health Network, Toronto. Phone: (416) 597-3422 ext. 7611. Email: firstname.lastname@example.org
• Charity Scott, JD, MSCM, Catherine C. Henson Professor of Law, Georgia State University College of Law, Atlanta. Phone: (404) 413-9183. Email: email@example.com.