This conference has chosen the theme of “voices of communities” as its running conference narrative. Interestingly, on this first day of the conference we were hearing a diversity of voices from the bioethics community. In a given session, there might be a philosopher, a health care administrator, and an entrepreneur presenting one after another. And those in the audience responding to their “performances” (thanks Alistair Browne), may include physicians, academics, allied health professionals, and lawyers. Each discipline tends to have their own way of presenting their findings, which requires a certain flexibility on the part of the conference attendees to adjust their gaze towards the particular disciplinary styles.
Plenary Lecture: Voice of the Voiceless – Andrew Robinson, BC Representative for Children and Youth.
The Plenary on Day 2 of the Canadian Bioethics Society meeting was given by Andrew Robinson, the Associate Deputy Representative Advocacy, Community and Aboriginal Relations with the BC Representative for Children and Youth (RCY). The mandate of the RCY is to support “children, youth and families who need help in dealing with the child welfare system and advocate for changes to the system itself”. Robinson started his talk with the appalling statistic that BC leads Canada in child poverty rates and that his organization is involved in 4500 children’s lives – children whose lives are significantly affected by decisions made by the state for their care. Aboriginal children are disproportionately affected – they make up 3% of the populuation but 50% of the children in care. Robinson cited the UN Convention on the Rights of Children on which Canada is a signatory. He asserted that it is a right for children to know “what’s going on in their life”. Drawing from his work with children, he shared stories of what happens when children are listened to. He spoke of one 7 year old girl who phoned their office and demanded to speak with the top person to ask “Can someone tell me why I can’t see my Mom?” Her mother had been removed from her because of mental health issues that put the daughter at risk. No one had explained to the little girl what was going on in her life. In another case, an abused child kept telling social workers that it wasn’t his father abusing him, but his mother. Based on the mother’s account the father was removed from the home. Only when Robinson’s organization got involved was the child heard, and made safe. Robinson feels that it is our obligation to listen to the voice of children and make sure it is heard. “Ethics”, Robinson says, “is humanizing each other.”
“If I could Say Five (5) Things” — CBS Lifetime Achievement Award: George C. Webster.
Complexity. Compromise. Courage. Context. Compassion. These were the five areas of reflection on a dedicated career of one of Canada’s more well-known ambassador’s of clinical ethics. Webster started his talk by thanking the nuns who had guided him and given him opportunities, and many other strong women who set him on his path of compassion. “It’s important to know what you don’t know,” he said, “and to know when you’re vulnerable.” He spoke to “a kinder path” for ethics in professional practice, including some of his writings on moral distress and the concept of moral residue.
Reconsidering Quality of Life and the Right to Die in Disorders of Consciousness — L. Syd Johnson, Novel Tech Ethics, Dalhousie University.
Johnson, a post doctoral fellow from Novel Tech Ethics at Dalhousie University, gave a brief review of the disorders of consciousness literature, which include conditions such as the minimally conscious states (MCS) and persistent vegetative state (PVS). In light of the recent findings by Adrian Owen, Steven Laureys, and others which suggest some patient’s in these conditions may retain islands of neural activity, in the context of patient welfare and quality of life, Johnson called for a more careful consideration of minimally conscious patient’s right to die, and cautioned against an assumption of ‘life must be preserved’ in all cases.
Empowering Minds for Youth Wellness: Youth Perspectives on the Meaning and Determinants of Youth Mental Health – Shari Laliberte & Kaley York, UBC and Thompson Rivers University.
Laliberte and York presented on adolescent views concerning their own definition of mental health and what these adolescents consider as the determinants of mental health. The adolescents did not want to refer to the term ‘mental health’ as specifically, as they believed it to be a stigmatized space. Adolescents were more comfortable talking about the mind, and what constitutes a healthy mind. Using a relational ethics framework, relationships were deemed to be the determinants of these youth’s conception of mental health. Determinants of health, as proposed by this groups of adolescents, included relationships with pets, nature and natural space, peer group, environment, and the future. What was particularly noteworthy, was this projects intent on asking youth themselves about their concepts of mind, and giving youth the tools for expressing themselves for expressing themselves in their own way.
With files from Elana Brief, Emily Borgelt, and Joanne Reimer.
Website: BC Representative for Children and Youth.
Novel Tech Ethics: Neuro.