Helping patients and families with end of life care decisions is one of the most difficult responsibilities of front-line health-care professionals. Deciding between aggressive treatment and a palliative, pain management approach can also be gut wrenching for patients and families.
Doctors, nurses and family members in Thunder Bay have always done the best they can with the limited training they have had to prepare them for these complex, emotionally charged encounters, but since August 27th, they can turn to the region’s first full-time bioethicist to help facilitate these difficult decisions.
Michelle Allain has a Masters degree in Health Professional Education from the University of Western Ontario and recently completed a fellowship in clinical and organizational ethics at the University of Toronto’s Joint Centre for Bioethics.
Bioethicists generally work in four broad domains: providing consultation, ethics education and policy review, and development, as well as engaging in research relating to ethical issues.
Funding for her role was provided by a consortium of five organizations: Thunder Bay Regional Health Sciences Centre, St. Joseph’s Care Group, the North West Community Care Access Centre, the Northern Ontario School of Medicine and the Centre for Healthcare Ethics at Lakehead University.
“As a bioethicist, my role is to help patients, families, staff and volunteers navigate often complex and value laden ethical decisions, to help ensure that the values of the patient are heard and respected, and that free and informed decisions about treatment can be made in keeping with what is important to them,” said Allain.
She also assists staff through both informal and formal education sessions.
While questions of consent, capacity and substitute decision-making are most often dealt with in an end of life context, they can also arise across the continuum of care and treatment decisions, said Allain.
For example, bioethicists can help to ensure that patients have the opportunity to accept or refuse proposed treatment, that they are fully informed about risks, benefits and alternatives, and that there is an opportunity to have their questions answered.
Life sustaining treatment policies, conflict of interest, privacy and confidentiality are also issues that can be considered through an ethics lens.
Patients and families aren’t always in agreement, noted Allain.
“Sometimes, the family thinks they know what the patient wants, but that’s not always the case, so it’s important to hear the voice of the patient and to maximize the ability of patients to make decisions for themselves. If they aren’t able to make a decision, that’s when we’d involve a substitute decision maker.”
When substitute decision makers of equal rank can’t agree, “I try to remind them that it’s their role to make decisions in line with what the patient wants, not what they would want (for themselves),” she said.
Allain’s advice to families is “to make it a priority to sit down and have a conversation about what’s important to their loved ones” in terms of quality versus quantity of life.
Patients can appoint a substitute decision-maker through a power of attorney for personal care. Otherwise, health-care professionals follow a hierarchy laid out in the Health Care Consent Act.
Advance directives communicating a patient’s wishes about being kept alive on artificial life supports can be included in a power of attorney or expressed in a living will, “but it goes beyond that,” said Allain. “It’s about the conversations you’ve had with your loved ones that can inform a decision when patients are incapable of making a decision on their own.”
In navigating through these decisions, bioethicists and health-care professionals should clarify what the question is and ensure that everyone has the information needed. Good listening skills, empathy and being present in the moment are also very important, said Allain.