When Director of Pastoral Care and Ethics, Dr. Rick Singleton, first suggested an initiative to have community representatives on our ethics committees my skin crawled a bit.
Don’t get me wrong – I’m in full support of community engagement in the work of ethics for Eastern Health. But, as a cultural anthropologist with expertise in the concept of “community representation,” the complexities of having community engagement in a way that is not mere tokenism were profound; the potential pitfalls if the selection criteria and training were not thoroughly thought through were, well, disturbing.
What would we do about individuals who wanted to use this as a platform to promote their own agendas (anger against the system, rights of disease group X, etc.)? How could we ensure that the representatives understood that their task is not to represent any specific ‘community’ but rather to present an alternative perspective? How would we find individuals with the skill set to hold their own in an intense discussion with health care workers, managers, and ethicists and not just promote the status quo? How could we, truly, avoid something that looked good in theory but was a sham in practice?
For me, both personally and professionally, it was important to do this right or not do it at all.
Facing health care challenges together
Well, despite all my reservations, we did do it right! On each of Eastern Health’s ethics committees – adult acute care, maternal-child health, mental health and addictions, long-term care, administrative ethics – we have two to three community members working alongside health care workers, managers and ethicists, sharing equally in the work of the committee, debriefing on ethics consults held about patient care dilemmas, drafting reports for consideration by senior management, planning ethics education events for health care workers and the general public, and revising Eastern Health’s health care policies.
A larger group of 40+ volunteers networks through meetings and email communications to deliberate and advise on emerging procedures and policies; for example, should there be mandatory seasonal flu vaccination for health care workers? What is needed in an advance care planning package for patients? Do Eastern Health’s values need to be redrafted, and if so, then what should be changed?
The Eastern Health Ethics Interest Group works well in part because our training emphasized what ‘representation’ is. But primarily it has worked well because the individuals who came forward to volunteer – in far larger numbers than we had anticipated – are an absolutely ideal group of individuals for this work. They are committed, strongly engaged, and not afraid to speak their minds. They genuinely provide an alternative perspective; they make the rest of us think, and very often they lead us in a direction that we never could have imagined.
There is no tokenism here, and I, for one, am glad to be proven wrong…this time! ■
This story was written by Dr. Fern Brunger, a cultural anthropologist with Memorial University’s Faculty of Medicine.