End-of-life care with Aboriginal families
By Carrie Bourassa, PhD, Mary Hampton, EdD, Angelina Baydala, PhD, Elder Ken Goodwill, Elder Betty McKenna, Kim McKay-McNabb, Gerald Saul, Velda Clarke, Jeff Christiansen, Marlene Jackson, Nuelle Novik, PhD, RSW, Chelsea Millman
Previous research suggests that cultural barriers can discourage ethnic minority patients from using services based on a palliative care philosophy. Palliative care philosophy promotes the idea of a “good death”: A patient-centred approach to relieving symptoms and meeting the goals of terminally ill people for their end-of-life care. The research suggests that Aboriginal families in Canada are a group that particularly needs these services. Our research project, “Completing the Circle: End of Life Care with Aboriginal Families,” acts on the recommendations suggested in the academic literature for cross-cultural end-of-life care. Our research objectives were to:
• enhance health care workers’ awareness of Aboriginal families’ end-of-life care needs
• increase awareness of the available end-of-life care services
• increase Aboriginal families’ access to palliative care services
This research was conducted using the community action research methodology described by Senge and Scharmer. This method promotes a community of practice approach, involving a learning community of practitioners, consultants and researchers working together. We have developed a strong network of collaborators in the Regina Qu’Appelle Health District in Saskatchewan, including palliative care services, native health services, Elders and other Aboriginal community members, and many community-based service agencies. These partners have been involved in designing curricula, videos and fact sheets, as well as serving as strong proponents of this project.
In order to educate health care providers about culturally appropriate and safe end-of-life care for Aboriginal families, we interviewed Saskatchewan Elders, asking them to share their experiences and beliefs about death and dying in the Aboriginal world. Research assistants on this project were graduate students from the First Nations University of Canada and from surrounding First Nations. The research assistants travelled to pow-wows throughout southern Saskatchewan to ask Elders what messages they would like to share with health care providers. We then produced a curriculum package that consisted of a 23-minute video, a PowerPoint presentation and lecture material available for a presentation on culturally sensitive and appropriate protocols for providing support to Aboriginal families. The video, “Completing the Circle: End of Life Care with Aboriginal Families,” opens with these words from one of our advising Elders on the project, Elder Ken Goodwill: “A friend, a relative or a community member dying is of special significance to First Nations and Métis peoples. It evokes special responsibilities and obligations that the living have toward those who are about to enter the spirit world. We hope this video will give health care providers some insights into those feelings, and that you will find ways to respect these traditions.”
In addition, as we began to work with health care providers we realized that they were, in fact, seeking information about Aboriginal people. They wondered why, when an Aboriginal person was dying, there were 30–50 people in the waiting room. They wondered who Elders were and why smudging and certain items such as stones and bundles seemed so important to patients and their families. They wondered how best to communicate with families. The Elders we interviewed for the video provided this information in a non-threatening, honest manner. They spoke from the heart and this appears to resonate with health care providers. The Elders addressed the issue of kinship and explained that many Aboriginal family ties are based upon extended family, rather than upon a nuclear family model. In a kinship system, family ties are not limited to bloodlines. It is common for large extended families to gather when there is a health crisis within a family. This gathering of extended family is a demonstration of respect and support for the ill/dying individual and provides support for those family members most affected.
Ceremony and healing
The Elders also addressed questions surrounding Elders and healers. They explained that Elders are integral to providing support and guidance to the family. They noted that ceremonies and healing are special gifts given by the Creator and, like languages, there are also many different healing methods used among Aboriginal peoples. Individuals who have special gifts of healing (e.g., Elders, healers, ministers, community members) may be requested by the family in their time of need. Healers, Medicine Men and Medicine Women facilitate communication between the ill person and the spirit world through ceremonies, prayer and so on.
Moreover, sacred and ceremonial items are integral to many peoples’ healing processes. Common healing sacred items include feathers, tobacco, sweetgrass, cloth, special stones and bundles, as well as medicines in the form of teas. The Elders explained that even though a person may be dying, s/he may be doing the most mental, emotional and spiritual healing that s/he has ever done, and the Elders or healers and the ceremonies they perform are essential to that healing.
The Elders also spoke forthrightly about how the sacred items must be treated with respect. If a health care practitioner or hospital staff member needs to move an item, s/he must discuss this with the patient and/or family members. Many items are blessed and therefore people are asked to respect that blessing and refrain from handling such items. In addition, women who are on their moontime (menstrual cycle) are asked not to handle sacred items or even be in the same room as the items. This is because menstruation is a very powerful time for women. It is viewed as a gift from the Creator that must be respected and protected. In many Aboriginal societies, women refrain from participating in ceremonies or touching traditional medicines and spiritual items because they are so powerful that they actually will draw that energy to themselves instead of the family member in need.
Initially, the OT worked towards building trust with Angela while engaging both parents in a process of consent. She scheduled a meeting in which the treatment approach was outlined to Angela’s parents in writing. She described the risks and benefits of the recommended approach, and explained that some of these interventions will feel intrusive or coercive to their daughter.
The father wanted to discuss the option of allowing Angela to go hungry until such time as she has no other choice but to eat solid food. The OT explained how, as a regulated health professional, she must ensure that treatment will provide the desired health benefits while reducing or avoiding risk or harm. From an ethics perspective, the risks must be minimized and the likely benefits must outweigh both the risks and harm to the client. Although the OT was familiar with the method described by Angela’s father, her opinion was that it was not suited for Angela.
Angela’s inability to chew and safely swallow solid food at this point meant that Angela would be at risk of aspirating. In addition, she felt it was uncertain how much this approach might compromise the child’s trust in her relationship with parents and in the therapeutic process. The OT maintained that harm of this approach would likely outweigh the possible benefits. While acknowledging the underlying conflict between the parents, the OT emphasized to them that informed consent for Angela’s treatment would require their agreement. Eventually, the parents provided their proxy consent.
Debriefing after the video
In addition to the video, the DVD includes a taped PowerPoint slideshow as presented by two research team members. This taped presentation was created because the team could not keep up with the demand to show the video and facilitate the PowerPoint slideshow in person. The taped presentation delves more deeply into some of the concepts explained in the video, provides time for self-reflection and provides the framework for a question and answer period. For example, after the video, we ask a series of self-reflective questions for participants to consider (although they do not have to share their answers):
• Think about customs or things that are unique to your family when someone approaches the end of life. Are these things cultural?
• What is my cultural background, how might it have influenced my values, beliefs, and ways of being, living and working?
• How might my own culture influence the way I feel about illness, death and loss, and how I express my feelings and thoughts about these important transitions?
• How might my own cultural beliefs interfere with my ability to provide compassionate whole-person care to my Aboriginal patients and their families.
This process encourages participants to examine their own cultures and cultural biases with the hope of them gaining an understanding that they do not have to agree with what was described in the video, nor do they have to understand it. However, what we are asking is for them to respect it as they would want their own cultural beliefs
and values to be respected.
We have had great success with these video packages, with health regions and various organizations, including universities, across Canada purchasing the video (cost-recovery only). We completed an additional video geared towards Aboriginal families entitled “Completing the Circle: Healing Messages About End of Life Spoken to Aboriginal Families.”
This video contains messages from Elders to help families deal with end-of-life care for loved ones. We also have a series of videos geared towards various audiences, including other researchers who are undertaking research in this area.
We feel that we have had such great success because of our guiding Elders on the project Elder Ken Goodwill and Elder Betty McKenna. Everything we do is approved by them and we rely on ceremony and prayer to guide us. We thank you wise Elders for your
prayers, patience and wisdom as we endeavour to create culturally safe health care for Aboriginal families.
Carrie Bourassa, PhD, is the Chair of Northern and Aboriginal Health and a principal investigator professor at the Northern Ontario School of Medicine, and scientific director of the Institute of Aboriginal Peoples’ Health at the Canadian Institutes of Health Research.
This article was reprinted with permission from Canadian Virtual Hospice (virtualhospice.ca).