In 2002, a sixteen-year-old girl with leukemia went to an Alberta provincial court to fight for her right to refuse multiple blood transfusions that her doctors felt she needed. She was a Jehovah’s Witness – her religious beliefs prohibited the transfusions. Her father opposed her stand, while her mother supported it. After much debate about the rights of young adults, the court found the girl to be a ‘mature minor’ yet granted the Alberta government temporary custody and ordered treatment. She was forced to undergo multiple transfusions, sometimes while sedated or restrained.
The case left Canadians wondering: Was the court justified in its ruling? Should mentally competent teenagers have the ability to make decisions about their own medical care? Are traditional religious beliefs invalid when they contradict modern science? What happens when one person’s notion of benefit differs from another?
Issues like this are being raised in hospitals across this country every day. Often, patients and staff alike are unclear on how to address them and who should make the final decisions. To help resolve issues between clinical staff, patients and families, hospitals are increasingly turning to ethicists. Bioethics involves critical reflection on ethical issues in health-care settings towards deciding what we should do, why we should do it and how we should do it. (Dr. Barb Secker, Ethicist, Toronto Rehabilitation Institute and the University of Toronto Joint Centre for Bioethics).
Sue MacRae, Deputy Director of the Joint Centre for Bioethics, says, “Bioethicists are trained to focus on the ethical, moral and often basic legal implications of the principles applied to decision making. As consultants, they often highlight the unseen or undifferentiated aspects of a situation.”
While ethicists are well established at teaching hospitals, they have only recently made inroads into other health-care settings such as community hospitals and long-term care facilities. They deal with a broad range of questions such as: What should happen when a family demands “futile” treatment? What should happen when life-sustaining treatment causes more harm than benefit? Should we honour an advance directive from an anorexic patient? Should parents be allowed to refuse blood products for their child? Even when laws concerning an issue are clear, there is often a question about what people feel should be done.
Dr. Paula Chidwick was one of the first clinical ethics fellows at the University of Toronto Joint Centre for Bioethics and has been on staff at William Osler Health Centre in Ontario for over two years. Osler was one of the first community hospitals in Canada to hire an ethicist, and Chidwick was aware of the many myths surrounding her role. However, she stresses that she is there as a resource for staff, patients and families who are facing ethical issues. She prefers a ‘unity in diversity’ approach to ethical decision-making. With this method, all parties come together and share their differing perspectives in an atmosphere of trust, equality and shared responsibility.
The goal is to try and reach the best solution possible. However, the most difficult decisions are choices between two harms. “Some situations are just so tragic and so filled with sorrow and there is nothing anyone can do to change it,” Chidwick says. “In those situations, in the end, all we have is the fact that we treat each other with respect, act with integrity, and be trustworthy regarding our relationship with the patient so that we preserve dignity and respect for the patient.”
It is these cases that result in the most moral distress and ‘moral residue’ – the sense of having compromised professional or personal integrity. Part of an ethicist’s role is to support the staff and patients in articulating ethical issues in order to promote ethical decision-making.
Although the reality of health care is that workers have to deal with difficult decisions as part of their jobs, an open forum to discuss concerns and learn from ethical issues is crucial to preventing moral distress, residue, burnout or loss of morale.
Linda Durkee, a Palliative Care Nurse and Palliative Care Coordinator, has had an interest in ethics for years and says ethicists can be useful in ensuring that patients and families make decisions that are right for them. She says, “As caregivers, we all have our own personal and professional beliefs É and whether intentionally or not, it’s pretty easy for us to lead people. An ethicist doesn’t have the same ‘vested interest’.”
At Osler, Chidwick, together with a clinical ethics intern and resident, is working to build a sustainable, integrated and accountable program that seeks to build capacity from boardroom to bedside and embed ethical considerations into all aspects of decision-making. Ruth Beck, one of the hospital’s three Vice-Presidents of Patient Services, refers to it as a ‘hub and spoke’ strategy and says, “It’s a whole philosophy where we’re trying to get people to integrate ethics into their work.”
Already, Chidwick sees that integration and a growing responsiveness to ethical issues among the staff. And other community hospitals are taking note.