By Bob Parke
In the last weeks and days, we have been made aware of the painful and tragic truth of what has happened at residential schools. We were informed of the finding of 215 unmarked graves in Kamloops and more recently about the 751 unmarked graves found at the Marieval Residential School in Saskatchewan. In the weeks and months to come the locations of more unmarked graves will be identified. We grieve for the multiple losses experienced by members of our Indigenous communities. Losses not only of precious lives but of language and culture. For survivors of the residential schools there is a trauma that is part of their lives and the lives of following generations. Trauma that has taken a toll on their physical and emotional well-being.
As healthcare professionals it may feel overwhelming thinking about what to do in response to the history and tragedies experienced by our Indigenous peoples. I believe that most of us in healthcare want to make a difference to the healing and reconciliation that is so necessary. The best starting point is to review the recommendations of the Truth and Reconciliation Commission. In the “Call to Action” there are recommendations that address “health.” We can become familiar with those recommendations and share them with those in our spheres of influence. If in partnership with Indigenous people we meaningfully begin addressing the recommendations of the Truth and Reconciliation Commission, we will be healers who provide safe and inclusive care that is culturally safe for all involved.
In this context we are rightfully being asked to participate in fulfilling reconciliation with our Indigenous peoples, acknowledge racism, and to meaningfully integrate diversity and inclusion into healthcare. These are positive and important goals to strive towards if we want to provide a just health-care system and ensure that our practices are culturally safe. To be more inclusive and address injustices, our health laws (which affect our practice) need to adapt to current knowledge and societal changes: Specifically, Ontario’s Health Care Consent Act, (HCCA) which has remained stagnate since its implementation in the 1990s. A law built on the foundation of white, Anglo-European philosophers who placed a high value on autonomy. While the HCCA upholds the value of autonomy, it does not reflect the reality of most people’s lived experience where decisions are made in relationship to others.
Although respecting the dignity and worth of each person is important, our teaching and application of health laws has created situations in which culturally unsafe practices take place. Sometimes, on an individual level or in an ad hoc way, we have found ways to accommodate cultural practices, such as allowing a capable person to defer decision making to another. Doing this may satisfy the immediate needs of a patient and/or family, though those who have strong feelings about the value of autonomy and follow a literal interpretation of the law will challenge that action.
Changing laws to ensure culturally safe practices may seem like a daunting task, but we need to begin speaking with policy makers, teachers of healthcare professionals, healthcare executives, and with members of the law profession in order to make this change. We need to make the point that cultural safety must be a priority when we create policies, teach approaches to healthcare, enforce standards of practice within the workplace, and when legal advice and actions are required. As we seek to influence policies, curriculum, and laws, we need to ensure that the right people and voices are at these tables. I am always reminded of the words from members of the disabled community: “If you are not at the table, you are on the menu.” Literally and metaphorically, we need to look around the table to see who is and who is not present. We also need to ensure that the voices we need to hear are not only present but being listened to throughout the process of the work being done.
While we wait for new laws to be developed and/or for amendments to current laws, we need to advocate for a nuanced response to health laws so that culturally safe practices are integrated into our present health-care practice. To achieve this, we need to find ways to accommodate culturally safe practice even if it departs from our training in the HCCA. There are several areas of the HCCA which could be critiqued, beginning with the concept of who makes health-care decisions. The law is predicated on a view of autonomous capable decision-makers. Yet for many people, decision making is a collective or relational process taking into consideration the family and community context of the person. When one participates in advance care planning, the impact on the person and those in their community (i.e., anyone who might narrowly or broadly be defined as family by the person) are often considered. Also, in the direct process of an immediate treatment decision, the person may want to include others who are not family but who they trust to provide support and advocacy, especially in situations where a person may feel vulnerable due to race, power imbalances, and prejudices.
Another specific domain of the HCCA which presents a barrier to culturally safe practice and where accommodation should be made is in the hierarchy of substitute decision-makers (HCCA, sec.20). As it is presently written, taught, and practiced, it serves as a barrier to cultural safety. Recently, I had the pleasure of completing learning modules from Virtual Hospice on the topic of cultural safety with our First Nations peoples in the context of palliative care. This is a learning opportunity I highly recommend. In working through the modules, it reinforced my belief that health laws with a hierarchy of decision-makers do not include opportunities for expanded participation in decision making for people like Chiefs, Elders, Healers, and others who may be wanted on their health care journey. First Nations peoples have historically encountered and continue to encounter racism, prejudice, and physically unsafe as well as culturally unsafe care. Because of these historical injustices, allowing extended participation in care and decision making should be given high priority by health-care staff when working with Indigenous peoples.
Health-care professionals have been taught that we should work with the patient if capable and only with the substitute decision-makers indicated on a hierarchy when the person is incapable. Consequently, while we are compliant with the law, we may often be participating in a culturally unsafe practice. For health-care practitioners who aspire to culturally sensitive practice, this can be extremely uncomfortable and unsatisfying. For persons needing care, we are putting them into a very vulnerable situation. Recognizing that while I am making some suggestions for changes to practice, I accept that it is and ought to be the person who decides what is culturally safe for them. If we, as healthcare providers, can move beyond the HCCA’s hierarchy of decision-makers and engage differently with those we care for, then we can provide quality care that is safe and satisfying for all.
We like to use catch phrases like “patient or person-centred care” but is it patient-centred care if current health laws present barriers to our ability to provide culturally safe practices? In the spirit of reconciliation and to address racial injustice in healthcare, I hope that we can be advocates to amend current health laws to create environments where cultural safety has a greater likelihood of being experienced. If laws cannot easily be changed, then can we nuance our teaching and interpretation of our health laws to be culturally safe and inclusive until they are?
Bob Parke is a bioethicist whose practice has a focus on palliative care. A practice which is inclusive of the person’s culture, tradition and abilities, in order to provide optimal physical, spiritual, social and psychological care.