When I began my final practicum placement on the Palliative Care Unit I did not have a very broad understanding of cultural awareness and sensitivity to issues surrounding end-of-life care. In complete honesty, I did not have a very good idea of what Palliative Care in general meant. Over the past 8 months on the unit I have come to learn the difference between Palliative Care and the dominant curative bio-medical based model of care. Instead of taking the curative approach to care, Palliative Care places a heavy emphasis on the psycho/social/spiritual needs of the individual while maintaining adequate symptom management through one’s end of life care (Williams, Crooks, Whitfield, Kelley, Richards, DeMiglio, and Dykeman, 2010).
The emphasis on psycho/social/spiritual care has marginalized Hospice and Palliative Care within the larger medical model based health care system (Williams et al, 2010). Within the medical model hierarchy, the bio-curative medical ideology is dominant. However in palliative care a hierarchy also exists. Hospice Palliative Care’s emphasis on western euro-centric approaches to psycho/social/spiritual care is the dominant ideology, and Aboriginal focused Hospice and Palliative Care is delegated to the lowest rung within this sub-category of care. How does this hierarchy manifest itself in the care that older Aboriginal people receive during their end stages of life?
Kelly and Minty (2007) compiled a report focused on the end-of-life challenges that Aboriginal peoples in rural communities are presented with, which include: little to no access to medical procedures; high turnover rates of doctors and nurses; lack of inpatient facilities; and difficulty accessing necessary medications. As a result of such inadequate supplies, knowledge, and care, older Aboriginal people living in the end stages of chronic illness have to leave their home communities to receive the necessary medical treatments that only urban centres can provide. Having to move away from one’s home community, into an institution, during the end stages of an illness can be extremely difficult and for an older person. Such a transition can lead to isolation, loneliness, and depression.
In Castleden, Crooks, Morgan, Schuurman, and Hanlon (2009) article, which focused on an intertribal discussion between three rural Aboriginal communities, it was discovered that major knowledge disparities existed within Hospice Palliative Care. The key informants felt that there was a lack of both Aboriginal cultural sensitivity and necessary cultural resources. Cultural services and accommodations that would create an atmosphere of safety and inclusion for an older Aboriginal person on the unit were identified as: including family and community members in decisions regarding the person’s treatment; providing interpreters who speak the same language as the person; and helping the older person to build a relationship with the doctor over a period of time.
As a social workers I think it is very important to be aware of the tumultuous relationship that has existed between Aboriginal peoples and the health care system. Kelly and Minty (2007) noted that older generation of Aboriginal people who are now entering the system have a great mistrust of the health care system. A history of mistrust and cultural trauma has put up many barriers to collaboration between patients and doctors. The older Aboriginal patient and the doctor are coming from two different perspectives with expectations and assumptions as to how communication should occur and how decisions for their care ought to be made. It is very difficult to overcome such barriers when the older adult is in a hospital bed, removed from their community, family, and culture. Castleden et al (2009) discovered that many older Aboriginal people, in their end-of-life planning, desire to re-connect with traditional ways of healing and culturally appropriate practices particular to this stage in their life. As a social worker on a palliative unit, part of being culturally aware would include linking my patients with community resources that would be able to meet their cultural needs. Part of my responsibility would also include inviting outside Aboriginal agencies to come and give presentations to the staff about Aboriginal perspectives on dying, and rituals surrounding end-of-life care.
When I first began my placement I had a discussion with a nurse who recounted their experience of caring for an older Aboriginal patient in their end stages of life. The nurse talked about the amount of people in the room, and how intimidating it was. As the nurse was discussing this with me I began to realize that the reason the situation was so intimidating was because of a lack of knowledge and understanding of the cultural relevance of what was happening. The nurse felt outnumbered, and felt that everybody was scrutinizing their every move. Upon reflection of the story I think that this individual would have greatly benefited from cultural sensitivity training. Had this person been educated about Aboriginal community rituals at end-of-life care they would have seen a completely different picture. Instead of commenting on how many people were in the room watching their every move, they may have actually felt honoured and humbled to be part of this community’s experience with the dying person.
In closing, I think that Aboriginal awareness training in the health care system would be the first step in bridging the knowledge gap between Aboriginal culture and the Western approach to health care. Yes, I realize this is a massive undertaking, and one that would not happen instantly, however I think it would be a step in the right direction. Thanks for reading.
-Michelle Kehler
Williams, A., Crooks, V., Whitfield, K., Kelley, M., Richards, J., DeMiglio, L., and Dykeman,
S. (2010). Tracking the evolution of hospice palliative care in Canada: A comparative
case study analysis of seven provinces. BMC Health Services Research, 10(147).
S. (2010). Tracking the evolution of hospice palliative care in Canada: A comparative
case study analysis of seven provinces. BMC Health Services Research, 10(147).
Kelly, L., Minty, A. (2007). End-of-life issues for Aboriginal patients a literature review.
Canadian Family Physician Journal, 53 1459-1456.
Canadian Family Physician Journal, 53 1459-1456.
Castleden, H., Crooks, V., Morgan, V., Schuurman, N., & Hanlon, N. (2009). Dialogues on
Aboriginal-Focused Hospice Palliative Care in Rural and Remote British Columbia,
Canada. Nanaimo, BC: Inter Tribal Health Authority
Aboriginal-Focused Hospice Palliative Care in Rural and Remote British Columbia,
Canada. Nanaimo, BC: Inter Tribal Health Authority
I think that providing the cultural sensitivity training you suggest would be a great improvement to the system. One of the things I think is the greatest barrier to this is that the health-care system is very overstretched. Where there are not even enough doctors and nurses to take care of the young people who are not yet dying, it is understandable that palliative care would definitely get bumped to the back of the bus - not necessarily right, but understandable since, as you say, from our cultural background the purpose of medicine is usually to save and to cure, and by those criteria palliative care is the least "effective" of all.
ReplyDeleteTo me, one of the most interesting questions that follows naturally from several points that you bring up in your blog is this; perhaps we should be challenging the dominant expectation that end-of-life should take place within a medical context (i.e. a hospital). As you point out, for many patients this means being totally separated from their home and communities. In general, it is true that there are some things (for example pain reduction) that will always be linked with medicine, but for the most part I find myself wondering if many patients should be allowed to pass away in their communities - and even in their own homes - if they so desire. As you point out, the objective of palliative care is not really to cure (patients are beyond that point) but to take care of a person in their final days of life. There is a dominant assumption in Canada that today life should end in a hospital, however even within this culture, this is a very recent assumption made possible by the explosion of the medical system. A century ago in Canada, dying in one's home surrounded by family was far more common - and in my own country of origin, Colombia, that is still very much the case. We tend to see the medical system as being a very temporary place to go for a very specific medical purpose. When one is past the chance of a cure, and death is inevitable, family and home become the normal surroundings and the best place to spend one's last days. I really wonder if many Aboriginal patients wouldn't feel the same way.
Thanks for you post Michelle!
ReplyDeleteI recently attended a discharge planning seminar that was focused on discharging Aboriginal patients up to Northern communites. As we all know often these Northern communities are very remote and often have a minimal amount of health services. One of the things that shocked me was when the subject of Palliative Care in Northern communities came up during the conversation. I knew that there were a iimited amount of health services up North, but I was shocked to learn that there aren't any palliative services in many Northern communities. I find this very tragic, becuase as you say in your blog entry many Aboriginal people who are in the last stage of their lives are seperated from their family's to pass away and more often than not their famiy's don't have the means or mode of transportation to travel and be with their family member.
Although I do believe that the cultural sensitivity piece would be a very important tool to help health care professional be more aware of the Aboriginal cultural practices related to death and dying in predominantly non-Aboriginal communities, I firmy believe that first we need to allocate the proper resources to ensure that palliative services are available in Northern communities for when people need them. I dont think that Aboriginal people should have to choose between dying at home without professional services or being relocated to a community that may have professional services but little to no knowledge of their traditions and customs.
Kendall
Michelle, while we are being honest, I must say that I had not really learned as much as I would have liked regarding Palliative Care, so your blog helped me get a little more insight and I want to say thank you. I think a question that came to my mind and I think Kendall has addressed it already, but I was thinking about how you were discussing that there is little to no access to medical procedures, high turnover rates of doctors and nurses etc and how older adults have to leave their homes/communities to receive the necessary medical treatments that only urban centers can provide. Thus, I wonder why it is like this. Like Kendall said she was shocked to learn that there were not any palliative services in many Northern Communities, I am shocked too to hear this. Also, I wonder why no one has pushed for these services to be in these communities. So I agree with Kendall that your recommendations are extremely valid and should be explored, but at the same time like Kendal said there needs to be proper allocation of resources to Northern Communities to make sure that palliative services are available for when people need them. It is disheartening that individuals have to leave what is familiar to them in order to get needed and deserved services. It almost appears that the message being sent to Aboriginal Communities is either leave everything you know to live or live a not so prolonged or great life where you are. So now I am wondering, if an Aboriginal individual chose not to go to an urban area for care, will some professionals almost blame them for that choice. Then society goes back to that individual defect ideology, which really bothers me.….Meghan
ReplyDeleteMichelle, I really enjoyed reading your blog! I am thankful for the insight you have provided me on recognizing the barriers that Indigenous elders currently face when they have to leave their home communities in order to come to urban centers to receive hospice and Palliative care. I feel that our Hospice and Palliative Care Services for aging Indigenous people need to provide their employees with mandatory Indigenous Training programs that will provide: Cultural Sensitive Training, Indigenous Spirituality knowledge, Basic Indigenous language courses and Communication Skill Training. By providing front line workers in urban centers with these programs and knowledge, they will be able to better support the needs of Indigenous elders, communicate in their languages, understand their needs and become cultural sensitive. It is unfortunate that our aging Indigenous population is currently having to leave their home communities to be provided with Hospice and Palliative care services. I agree with you, Michelle, that our aging Indigenous elders are enduring difficult transitions by leaving their home communities in order to receive the care they need.They should not have to experience isolation, loneliness, and depression. I am outraged with the lack of health care, doctors, nurses, hospitals and medical care which is affecting the Indigenous Population. Governments on all levels need to support and provide the health care needs of Indigenous elders in order to allow them to remain in their home communities with their families during their end of life care.
ReplyDeleteArlene
I definatly agree with you in the sense that many people in the health care profession do need aboriginal awareness training. This would be an amazing thing for health care workers to experience because maybe this would eventually help them (the health care worker) be able to work to their fullest potiential with the patient at their end life stages because this is such a crucial culture in our country. I do agree that educating would be the best way and I also believe that this would help knock down some of the 'isms' that some aboriginal people face because of their lack of cultural knowledge.
ReplyDelete~Jessica
Michelle,
ReplyDeletegreat post, it is unfortunate that all the things you have discussed ring so true. When i think of the lack of resources available to Indigenous people and especially those living in remote communities i am overwhelmed. Unfortunately culturally safe and informed palliative care practices is just part of the larger picture. I struggle to understand how to even begin making changes that would benefit Indigenous Older Adults.
Additionally, It is so important that as professionals who support patients and families through the dying process that we are competent to do this no matter what their cultural affiliations are. It is also important to remember that we will never know everything about how families deal with death because everyone is different. There is so much variety of belief and practices throughout Indigenous nations it would be very difficult to know everything. At the same time i don't think we need to know everything but we need to know how to provide a safe and open environment in which families and patients are able to voice the needs they have when faced with death. How can we make a system that is more flexible to the needs of the clients we serve?
thanks
-meagan
Michelle,
ReplyDeleteThanks for your thoughtful entry.
As I've mentioned in other comments, I was recently at a WRHA Aboriginal Teaching morning, and an elder from the community shared many stories with us.
He spoke of how it was at one time his job to do Aboriginal awareness training with WRHA staff. He also said that at one time, this training was manditory for all staff; manditory! Today, though it is apparently strongly encouraged, WRHA Aboriginal cultural training is optional. With some of the stats others have reported concerning the number of aging Aboriginal people who will be entering care in coming years, I am shocked that this training is optional.
I have heard story after story of how health care staff handled situations inappropriately concerning Aboriginal patients. Whether is it related to the amount of people in the hospital room, or who is considered 'family' in the WRHA sense, so many situations, like the one you shared Michelle, can be easily avoided. Education is powerful. In an era where we are apparently moving toward greater inclusion, and pride ourselves in our multicultural nation, I cannot believe the Aboriginal awareness training continues to be optional.
Perhaps a letter to our facility heads is in order?
-Nikki