Provision of comprehensive, culturally competent palliative care in the Qikiqtaaluk region of Nunavut

Respecting Inuit culture, end-of-life care planning, and the role of family.

Participants emphasized the importance of providing culturally sensitive palliative care by respecting patients’ wishes and goals of care, and the importance of not having any preconceived notions about Inuit culture or rituals. A participant said, “Not applying the same values or my values or goals .… So, I think respecting those choices.” (Interview 12)

Participants often noted a reluctance or conscious decision by patients and families to not discuss goals of care or end-of-life care planning.

[The] conscious decision to not talk about it [goals of care and end-of-life care planning] is probably the biggest barrier that I’ve encountered. (Interview 13)

A barrier that I’ve encountered is just different cultural expectations. Some Elders believe that this is a private experience and sometimes symptoms they just are to be suffered through, and sometimes people are reluctant to ask for help with symptom management. There’s a lot of people that just don’t like to discuss end-of-life issues and it’s not really something that I think is traditionally discussed and planned for in advance as much as maybe in some other cultures. (Interview 13)

In addition, many participants mentioned the critical role of family and extended family in Inuit culture for support and decision making.

I think family tends to be a very important thing and lots of people want their families around and the families want to be around, so that kind of supportive family environment. (Interview 13)

Extended family is a very important part of Inuit culture in general, I think, especially at the start of life and at the end of life; we see that a great deal and we try and accommodate that as much as possible. (Interview 5)

Recognizing the importance of the northern community (sense of home).

Participants described the importance of community for Inuit patients and their families, noting a strong desire by patients to receive medical care at home or in their home communities.

What I’ve witnessed is just a very strong desire by the patients and their families to want to be cared for at home. I don’t know if one would call that culturally sensitive, but that’s just the overwhelming theme I’ve seen time and time again, as they do want to live and die in their home surroundings and environment with their families present. (Interview 2)

Working in Iqaluit, one of the big things is also geographically sensitive care, as well. So, there are certain patients that definitely feel more comfortable being in a hospital setting, where others would much rather be at home, and that’s something I would say really differentiates palliative care here from a lot of other places. (Interview 13)

Participants also outlined multiple issues that need to be considered by health care providers when helping patients and families with life-limiting illnesses make treatment decisions based on their goals of care, especially regarding possible transfer outside of their communities in Nunavut for further investigations or treatments.

The difference here compared to other places is often what gets the conversation going is often you have to talk about—in addition to what their code status is—you have to talk about whether they want transfer or not, whether they want transfer to Ottawa, whether they want transfer to Iqaluit. I do often have to talk about how far they would really be willing to be transferred for their goals of care. (Interview 6)

Culturally speaking, the Elders want to die where they lived. They want to be with the family when they pass on, and a lot of the Elders [we have seen] recently have been refusing to go to Ottawa because they know there’s a chance if they go down, they’re not coming back; and if they’re told that a lot of them will refuse to go to Ottawa because they want to die on their own terms, in the community. (Interview 1)

Being aware of the limited health care resources.

Participants described the effect of limited resources on their ability to provide palliative care in the Qikiqtaaluk region of Nunavut, which was believed to be a concern in most remote northern communities. Participants noted Inuktitut interpreters were often not available at the QGH in Iqaluit and that they had to rely on other health care providers or most often patients’ family members for interpretation.

I think the big thing … for palliative care is the effect of distance and how great that is and how important for many, many people it is to be able to have care close to home. So, whatever services are provided in palliative care … I think we need to be cognizant of the realities of those communities and the limited resources they have and may be available. (Interview 1)

We don’t always have interpreters available and if the family’s not comfortable discussing it [goals of care and end-of-life care planning] with their loved one, then it’s a very difficult conversation to have. It’s almost impossible if we don’t have an interpreter and we go without interpreters fairly often. So that’s definitely been a barrier. (Interview 5)

Recently, we’ve had a few more interpreters, but I probably work 80% of my shift without one and that’s a huge safety issue all on its own. When it comes to clinical conversations like code status and end-of-life planning, you know it’s impossible to do it if you can’t speak the language. (Interview 5)

Recognizing the critical role of medical interpreters.

Participants described the critical role of Inuit interpreters as members of the palliative care multidisciplinary team. Participants identified a need to better support and educate interpreters in their approach to palliative care, advance care planning, and goals of care.

I think it’s really important that you have a skilled interpreter who’s comfortable having those conversations. (Interview 13)

I certainly don’t want to feel like we are forcing them to have a conversation that they may not want to have personally or culturally, but I feel that we’re not even getting the point across as to why we want to have the conversation. If the interpreters can be educated in that, that would be a huge help to us. (Interview 8)

Participants also reported that Inuit medical interpreters were often uncomfortable discussing advance care planning, including recommendations against cardio-pulmonary resuscitation and end-of-life care planning.

I think it’s one area that does pose a bit of a barrier …. Even if I talk a bit of Inuktitut, I still would not be able to have a good discussion around this in someone’s first language. And so we rely a lot on the interpreters, but I think it’s an extremely challenging thing for them. (Interview 12)

Finally, participants described their experiences using family members as interpreters when no medical interpreter was available. Participants often noted reluctance by family members to discuss goals of care and end-of-life care planning with health care providers.

I try not to use family members for palliative care conversations even more specifically than other things because of the reluctance of people to discuss some of these issues, and when you’re having a palliative care discussion, code status, goals-of-care discussion, you really want to make sure that the information that is being delivered to the patient is accurate and complete. So if there’s nobody around, I will use family members, but that’s certainly a last resort. (Interview 13)

What I’ve seen a lot of is families fairly reluctant to have a discussion with a loved one that is dying, and sometimes the discussion is had at the point where the patient has already suffered and they could have benefited from a more formal, organized palliative care plan. (Interview 5)

Improving the quality of palliative care programs and resources, as well as health care provider training in palliative care and Inuit end-of-life care.

Participants identified several ideas for improving the quality of palliative care provided to patients and their families by building on existing community resources and programs. Ideas for quality improvement included the need for better continuity of care by health care providers for palliative care patients in remote communities, standardized palliative care guidelines for health care providers, and access to a specialist palliative care physician familiar with local palliative care programs and resources to support local health care providers.

It’s still a bit patchy in terms of provider coverage for the small communities. (Interview 12)

I think we need a little bit more of a standard of care for a palliative approach. Right now, people are adopting whatever measures they’ve learnt from the south and brought them up north, so those vary, and I’m a fan of standardized care, so everyone’s on board and everyone gets good treatment. (Interview 4)

Would certainly be ideal if we had more access to a full-time palliative care physician or who covers Nunavut as a whole through telehealth. The GPs who work here who all have varying degrees of experience and comfort with palliative care as well as all of the outpost nurses, if they could have access to that, that would be great, too. (Interview 8)

Participants believed that members of the palliative care multidisciplinary team would benefit greatly from additional training and education in advance care planning, goals-of-care discussions, a palliative approach to care, and providing culturally sensitive end-of-life care for Nunavummiut by understanding their sociocultural background. Participants had various types of previous training and education in palliative care, and no participants had received any previous formal education or training in Inuit culture or end-of-life care.

We need more education, because unless you come here with a palliative care background, this ain’t the place you’re going to get it. So, a bit of, you know, the mindset of palliative care—the assessments involved in palliative care. (Interview 9)

I think we could all benefit from that [education on providing culturally sensitive end-of-life care for Nunavummiut], and I think it’s almost imperative to integrate that into our orientation for all our new hires, too, to understand where people have come from, where they are today, and what their needs are. (Interview 4)