Titulaire de la Chaire sur la santé des gens du Nord et des Autochtones, chercheuse principale Professeure, École de médecine du Nord de l’Ontario; directrice scientifique, Institut de la santé des Autochtones Instituts de recherche en santé du Canada
Completing the Circle: End of Life Care with Aboriginal Families

 

Authors: Carrie Bourassa, Ph.D., Dr. Mary Hampton, Ed. D., Dr. Angelina Baydala, Ph.D., Elder Ken Goodwill, Elder Betty McKenna, Kim McKay-McNabb, Gerald Saul, Velda Clarke, Jeff Christiansen, Marlene Jackson, Dr. Nuelle Novik, Ph.D., RSW, Chelsea Millman

Background

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 care1. 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 care2, 3, 4, 5. 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 Scharmer6. 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 powwows 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.”

The Need for this Work

When we began this project more than six years ago, it was clear to us why this work needed to happen.  The statistics are devastating.  For example:

  • The Aboriginal population grew by 45% between 1996 and 2006 - almost six times faster than the general Canadian population.
  • The Aboriginal population is predominant in Ontario and the Western provinces where 8 in 10 Aboriginal people reside.
  • First Nations people continue to suffer from high rates of chronic and infectious disease and higher mortality and infant mortality rates compared to the general Canadian population.
  • Cardiovacular disease, diabetes, obesity, cancer, stroke, suicide, motor vehicle accidents and Homicide are major causes of death among Aboriginal populations.
  • The life expectancy of First Nations peoples has been estimated at 68.9 years for males and 76.6 years for females, reflecting differences of 7.4 and 5.2 years, respectively, from the Canadian population’s life expectancies.
  • Preventable deaths due to circulatory diseases (23% of all deaths) and injury (22% of all deaths) account for a near staggering 50% of all deaths in the First Nations population.
  • For First Nations people aged 1 to 44, the most common cause of death was injury and poisoning. The primary cause of death for children less than 10 years old was classified as unintentional (accidents).
  • Suicide rates for Aboriginal youth range from 5-7 times higher than the national average.
  • The potential years of life lost from injury alone was more than all other causes of death and was almost 3.5 times that of the general Canadian population7, 8.


In addition, as we began to work with healthcare 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 to 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 the patient and the family.  They wondered how best to communicate with the family.  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 blood lines. 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.

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 spirit world through ceremonies, prayer, etc.  Moreover, sacred and ceremonial items are integral to many peoples’ healing process.  Common healing sacred items include: feathers, tobacco, sweetgrass, cloth, special stones, 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.

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 that we ask participants to consider (though they do not have to share their answers):

  1. Think about customs or things that are unique to your family when someone approaches end of life.  Are these things cultural?
  2. What is my cultural background, how might it have influenced my values, beliefs, and ways of being, living, and working?
  3. 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?
  4. 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.

Conclusion

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 recently 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 are in the process of finalizing three more videos geared towards various audiences including other researchers who are undertaking research in this area.  We hope to launch those in the coming months.

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.



References

  1. Quality End-of-Life Care Coalition (2004). Dying for Care: Status Report, June 2004. Ottawa: Canadian Hospice Palliative Care Association.
  2. Field, A., Maher, P. & Webb, D. (2002). Cross cultural research in palliative care. Social work health and mental health, 35, 523-543.
  3. Health Canada (2002). 2000 Vital Statistics of the Saskatchewan Registered Indian Population.
  4. Nyatanga, B. (2002). Culture, palliative care and multiculturalism.  International Journal of Palliative Nursing, 8(5), 240-246.
  5. O’Neill, J.  (1994).  Ethnic minorities—neglected by palliative care providers?  Journal of Cancer Care, 3, 215-220.
  6. Senge, P., & Scharmer, O. (2001). Community action research: Learning as a community of practitioners, consultants, and researchers. In: P. Reason & H. Bradbury (Eds.). Handbook of action research: Participative inquiry and practice, pp. 238-249.
  7. Statistics Canada (2008).  Aboriginal Peoples in Canada in 2006: Inuit, Métis and First Nations, 2006 Census.  Downloaded Dec. 9, 2009:  http://www.statcan.gc.ca/daily-quotidien/080115/dq080115a-eng.htm
  8. Health Canada.  First Nations, Inuit and Aboriginal Health. http://www.hc-sc.gc.ca/fniah-spnia/index-eng.php