The Difficulties End-Of-Life Decision-Makers Face

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March 2, 2023
Saúl Bucio/Unsplash, Creative Commons This post was co-authored by Samantha Mason and Robert T. Muller, Ph.D. When a physician and decisionmaker disagree about a patient’s proposed treatment,…
Saúl Bucio/Unsplash, Creative Commons

This post was co-authored by Samantha Mason and Robert T. Muller, Ph.D.

When a physician and decisionmaker disagree about a patient’s proposed treatment, the Consent and Capacity Board (CCB) resolves their dispute. This often occurs when an end-of-life (EOL) decision must be made.

An independent administrative tribunal created by the Ontario government under the Health Care Consent Act (HCCA), the CCB adjudicates matters for individuals who lack the capacity to make their own treatment decisions, for which a substitute decision-maker (SDM) is appointed. That is, someone who may be responsible for deciding whether someone remains on life support.

An Intensive Care Unit (ICU) physician will usually recommend removing life support through a proposed treatment plan. The SDM, typically a family member, must consent to the proposed treatment plan before the physician can proceed. If the parties are unable to agree, the physician can file an application to the CCB to determine whether the SDM is fulfilling its legal obligations under the HCCA.

Krista Bulmer is a lawyer and former adjudicator on the CCB. Her role as an adjudicator was, in part, to hear and decide the applications brought by ICU physicians involving end-of-life decision-making. Bulmer explained that these applications were very fact specific and always difficult. The hearing panel might decide that the SDM was fulfilling their legal obligations and the matter ends there or that the SDM failed to act in accordance with the patient’s prior capable wish applicable to the circumstances. The panel would then make an order directing the SDM to consent in accordance with the patient’s prior capable wish.

If the patient did not have a prior capable wish applicable to the circumstances, the panel would have to determine whether removing life support was in the patient’s best interests. The SDM must then consent to the proposed treatment, namely removing life support. If they fail to follow the order, they are removed as SDM.

Bulmer explained that, ultimately, the effect of this order is to ensure the ICU physician obtains the consent required to implement the proposed treatment plan, including removing life support. CCB orders could ultimately result in the physician obtaining the consent needed to withdraw life support. As Bulmer put it: “There are few things in the legal realm more sobering or serious than that.”

Bulmer knew the difficult evidence in these cases could result in vicarious trauma. An advanced understanding of the potential mental health impacts of making decisions in EOL cases is invaluable. When asked about the mental health supports in place for board members, Bulmer discussed an atmosphere of support in the work environment and between board members.

As one may imagine, emotions can run high in these types of hearings. Often, heartbreaking testimony is offered from both sides of the dispute, as all parties involved care deeply about the patient. This includes family members and the medical staff caring for the patient. Being a part of a panel can create an atmosphere of support from others with the same experience, and panel members can discuss how the hearing process impacted them at all points of the process.

Bulmer expressed that it was very helpful to have colleagues that understood what you were experiencing and who could offer their support.

The panels are often well-rounded, containing community members and professionals from medical and legal fields. Working in a supportive environment ensures colleagues look out for one another to combat the potential negative mental health impacts such as compassion fatigue and burnout in this difficult yet crucial line of work.

Bulmer shared that EOL cases stay with her, and she continues to think about the patients and their families. She sometimes winced when she recalled the painful details of some cases but also felt fortunate that she had not experienced any long-term negative impact.

Bulmer viewed her past work on EOL cases as some of the most important of her career, and she is confident that she and her colleagues have made good decisions in these cases based on the evidence before them. “Knowing this may explain why these cases have not had a negative impact on my overall mental health.”

Copyright Robert T. Muller, Ph.D.