Cultural safety and palliative care: a conversation with the North West Palliative Care Group

"When we are talking about culturally safe care, it's really having that background, that trauma-informed care approach. And that's for any person, it's not Indigenous-specific. To make it Indigenous-specific is to understand that Indigenous people in Canada have had a very different history. Every single Indigenous person that you have met or spoken to in Canada has been affected by the residential school system, as the last one closed in 1996.

It's a reflective practice .... looking at our physical care, mental, emotional, and spiritual care, and every single person as an individual. And that's an Indigenous way of thinking and doing. And I think that would benefit anybody going through the system." - Gloria Ranger

Valerie Jensen is a regional palliative care clinical coach with the Northwest Regional Palliation Care Program at St. Joseph's Care Group in Thunder Bay and is a registered nurse working as a palliative care clinical co-lead with Ontario Health Northwest.

Barbara Persky is a primary care nurse practitioner and a palliative care clinical coach for Kenora's Chief Advisory and Indigenous primary care program in rural areas around Kenora. 

Gloria Ranger is the manager of Indigenous Cultural Safety and Education at St. Joseph's Care Group in Thunder Bay. 

Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Transcript

SPEAKER_00 0:00

Welcome to the Strengthening a Palliative Approach in Long-Term Care Alliance podcast. Exploring challenges and best practices and palliative care approaches for individuals in long-term care.

SPEAKER_01 0:16

Today on the podcast, we're speaking with long-term care professionals working in Northwestern Ontario. Valerie Jensen is the Regional Palliative Care Clinical Coach with the Northwest Regional Palliation Care Program at St. Joseph's Care Group in Thunder Bay, and is a registered nurse working as a palliative care clinical co-lead with Ontario Health Northwest. Barbara Perinsky is a primary care nurse practitioner and a palliative care clinical coach for Kenora's Chief Advisory, an Indigenous Primary Care Program in rural areas around Kenora. And Gloria Ranger is the manager of Indigenous Cultural Safety and Education at St. Joseph's Care Group in Thunder Bay. Welcome to the podcast. I'm looking forward to speaking with all of you, but I'd like to start by asking each of you to tell me a little bit about your journey towards your career in palliative care. Gloria, I guess I'll start with you.

SPEAKER_04 1:13

I've been with St. Joseph's Care Group for two years now, but prior to this, I worked at the Internity Indigenous Friendship Center for 21 years. And did a lot of different work with community. And we did have a program that was called Lifelong Care, where we focused a lot on seniors and people who needed long-term care assistance. So that's like personally where a lot of my interest came in. The system really does need to be there to help support people in that transition in their life. Traditionally, our seniors would have been looked after by community members, by family members. And we've transitioned out of that because I think a lot of our seniors have developed a lot of other health issues that require support from professionals like nurses and personal care workers, which is like greater than what a family can do. How do I include culturally safe approaches in long-term care? And how do we educate staff on those culturally safe approaches?

SPEAKER_01 2:18

That's wonderful. It sounds like such an interesting career and lots to explore.

SPEAKER_04 2:23

Yeah, it's been a lot of my education has been in Indigenous studies. So I really do bring that lens into the work here. And it's been really wonderful seeing the growth and the willingness that people have to be uncomfortable when we're talking about culturally safe approaches, when we're addressing racism, when we're addressing bias.

SPEAKER_01 2:47

Barbara, tell me a bit about your journey.

SPEAKER_02 2:49

Absolutely. I'm actually a primary care nurse practitioner. Prior to that work, I was the chemo and palliative care nurse at the Lake of the Woods Hospital. I'd done that for many years. And it was such a privilege to be working with patients as they journeyed through all their life challenges and nearing the end of my career. It just happens that I was given the opportunity to work further in the palliative care coach role and to improve the palliative care trajectory.

SPEAKER_03 3:24

Wonderful. Valerie, over to you. I'm a registered nurse. I've been a registered nurse for several decades now. And I did have the opportunity to work over 18 years in long-term care settings and homes here in the Thunder Bay area. And it was at that time I had the opportunity to be involved in the Quality of Health Care Long-Term Care Research Project that was led by Dr. Mayor Lou Kelly and Sharon Catholic. That really began my passion for Palace Care Education. And also from a personal perspective, my own personal journey of having a family member living in long-term care and pathway in long-term care really sparked my interest in education and support as well. I've had the opportunity also to work in the role of the Ontario Health Northwest Clinical Co-lead role for the last five years. And in the last couple of years, I've had the opportunity to work as a Pala Care Clinical Coach for the Northwest Region supporting long-term care homes as well as retirement homes and senior assisted living, where I've had the opportunity to work with other clinical coaches in the region as well as other health care system colleagues and organizations for supporting palliative coach to care and long-term care and incorporating the use of the LTC resources. It's been a real great uptake.

SPEAKER_01 4:41

What a wealth of experience the three of you have.

SPEAKER_03 5:35

So as Barb had mentioned, the role of the clinical coach really is supporting the implementation of the community model of care, which includes long-term care homes. And really our roles are as clinical coaches is supporting homes with implementing or enhancing processes for embedding of health approach to care in day-to-day care activities. We work directly with organizations one-on-one to assess current practices, identify any particular identified needs or priorities of the organizations, as well as to propose suggested activities that we can support. Whether it be education delivery, sharing of resources, to really enhance health care providers or to increase health care provider and frontline staff competency, impellative care, including impelled approach to care, and improving the quality of life and end-of-life care for residents living in long-term care and support to family caregivers as well.

SPEAKER_01 6:30

Do you see this role as being different in the north as opposed maybe in southern Ontario?

SPEAKER_02 6:37

I feel that it is different. I think every community is different. Their needs and their strengths and their community capacities are all different in all areas. For sure, in the north, in a place that I live in Kenora, Ontario, the assessments that I did on all the organizations did show a very common theme of challenges that we have in Kenora, being a rural population of 16,000 and 8 to 10 indigenous communities. We don't have access to hospice in our community. We don't have 24-7 access to palliative care services. We don't have designated care coordinators. We don't have early identification of palliative care. And we do lack the grief and bereavement portion of palliative care in our community. One positive through all these visits with the organizations, however, is everyone's keen. Everyone's enthusiastic. Everyone knows there's these challenges.

SPEAKER_01 7:46

Gloria, I'd like to explore a little bit more about cultural safety. I wonder if you can tell me a little bit about what you feel are the hallmarks of quality culturally safe program and what some of the challenges are.

SPEAKER_04 7:59

As an educator, right? We educate staff, whether you're a nurse, a PSW, or even maintenance, like everyone comes into this education background without really understanding a big part of Indigenous history in Canada. So what does that approach look like? And when we are talking about culturally safe care, it's really having that background, that trauma and form care approach. And that's for any person. To make it indigenous specific is to understand that Indigenous people in Canada have had a very different history. There's residential schools, like every single indigenous person that you have met or spoken to in Canada has been affected by residential school and residential school system. Like the last one closed in 1996. So that's a huge portion of our population that have an effect. What does that mean when we're looking at point of care with palliative approaches, with long-term care, and access to culture? You don't have to have all of the knowledge of what has happened to a person to provide that kind of care. But we do have to acknowledge that that person might have had a traumatic past and that some of my approaches could be perceived as being insensitive to that. It's a reflective practice, it's that added layer of understanding. It's also understanding that, you know, there are many different nations of Indigenous people in Canada, and that we don't all have the same practice, we don't all have the same belief systems. But it's really understanding the community that you're working in. Looking at our physical care, mental, emotional, and spiritual care. And every single person as an individual. That's an indigenous way of thinking and doing. And I think that would benefit anybody going through the system. If we were to take that individual approach and really see what that person want mean and what would make this experience meaningful for them.

SPEAKER_01 10:13

Is there a challenge in terms of having resources to do that? It can be challenging to provide that individual care, right?

SPEAKER_04 10:20

Absolutely. We need better funding for this type of care. I've heard elders talk about when they were younger and something was passing, the family would be at bedside and people would take terms, and that person was being cared for, especially in those last few weeks of someone's uh journey. We often can't do that in an institution because one person is looking after many, many people they want to be there to support them. They have multiple people, they're not always there holding that person. And how do we balance the humanity and how do we allow for that kind of care?

SPEAKER_01 11:05

Are there specific tools that you use when you're educating about cultural safety?

SPEAKER_04 11:11

We have a workshop called Repairing Secret Circle, which is an introduction to the idea of cultural safety. Um it's really just an awareness workshop so that people can start thinking about what does truth and reconciliation mean to me as an individual and my other place. It's a start in understanding bias and the power dynamics in my role as a provider, a error. There's a lot of individual plans that we have done and a lot of group education.

SPEAKER_01 11:47

Val, you mentioned using these FA LTC tools. I wonder if you can tell me a little bit about the resources that they use and how are they working in the workplace.

SPEAKER_03 11:58

So the FA LTC Toolkit is a comprehensive toolkit for supporting long-term care homes and staff with all the embedded resources that's available through the toolkits. It starts with introducing the homes and the staff to the toolkit, as well as all the individual items as well. Individual resources that are all very practical tools to support and guide staff and processes for integrating a POL approach to care. There also are the illness trajectory pamphlets and brochures that are provided to homes. Homes can choose to use them. They are great conversation starters as well for helping individuals, residents and families and and staff understand about a disease and what progression of that disease might look like. And what are some of the practical tools and supports that are available to staff as well as families and residents for their awareness? As well as incorporating grief and bereavement tools and resources are so valuable. There's so many resources. For asking questions that they might be curious about or might not think about to ask the medical providers. So really it's embedding all these resources and tools and and increasing the awareness of their availability and how staff can utilize them to support them in their practice for growing that confidence and comfort with engaging in serious illness conversations, family members when they see that a resident is approaching end of life, supporting those conversations to support care planning, that everyone is on the same page, and to also support the awareness of the great quality end-of-life care and care that can be provided in long-term care homes in those familiar environments that the residents are comfortable in.

SPEAKER_01 14:18

If they all have the same resources, they can maybe have a conversation that helps to ensure that the person in palliative care is at the center of the conversation, right?

SPEAKER_03 14:28

Yes, and also an important piece as well is helping to support the understanding that palliative care is just not end-of-life care. Integrating a palliative approach for any individual with a life-limiting illness, and how do we support that understanding and that common language and supporting individuals, residents and family and staff and caregivers throughout that journey of disease progression from the time the resident moves into long-term care throughout their stay and at end of life. Yeah.

SPEAKER_02 15:01

Barb, did you want to add on that? Absolutely. I find that this SPA LTC is really an investment in the organization and in the family and patients, in that it has a high impact to improve quality of life. The SPA LTC resources really just gives permission for the family and the patients or the residents to have those difficult conversations. But it's frightening to start the conversation because you don't want to feel like you're wanting them to die or you're going to move the deaf along faster. It just gives permission for them to be brave and to have those conversations. I feel as a primary care provider, nurse practitioner, is that we are very good at giving physical care, bathing the patient, taking them to the washroom, helping them with feeding. But we kind of forget, like Gloria said, the holistic aspect of our being. And that is the psychosocial. That people are scared. They haven't died before. I think at the end of my day, I've known I've given good physical care. But sometimes I go home and I think it's similar to other nurses. We go home and we feel we just didn't do a good job that day. You know, time is a big factor. We have many responsibilities, and you know, the patient's been washed and cared for in that way, but we haven't taken those moments. They're not long conversations, but there's those moments to ask the patient how are you doing? Are you frightened? You know, what can I do to make this better for you? Can you tell me how I can provide better care for you and your family? How can we do that? Or talk about their joys, talk about their past life of the things that gave them value and purpose.

SPEAKER_01 17:11

I love how you talked about the fact that people are scared. People haven't died before, and that is a scary thing, and people find it hard. I think sometimes people feel it's a burden if they want to talk about it with someone, right? That they feel bad about bringing it up.

SPEAKER_02 17:27

In my past work as a chemotherapy nurse, I think just about all the patients would tell me how scared they were. And they'd wake up at three in the morning being very frightened, but they were worried to talk to their partner about it. They didn't want to be that burden. They just want this whole scenario to go away, even though they know it won't. So, you know, those are tough conversations, and it's okay to give people permission to talk about it. And it is hurtful, and to identify that it is sometimes hurtful, but it feels good to get it off your chest to open the door and allow those feelings to flow through the family and the resident.

SPEAKER_01 18:29

Gloria, I'm gonna start with you.

SPEAKER_04 18:31

I always tell people, organizations, people who are uh busy and all of these things, like what are your policies and procedures? Do you have a racism and discrimination policy that includes cultural safety? What kind of education is your organization doing for understanding cultural safety? Not just for Indigenous people, what education is happening? Do you have community involvement? Do you have a client and family partners that are involved in your boards and decision making? These are things that I think really increase cultural safety, not just for Indigenous folk, but for the community at large. Because oftentimes, you know, like as an organization, we often think that we know what's best for the clients. But really, are we allowing that voice of our residents, of the people who are in palliative care to come through? Are we creating space for that?

SPEAKER_03 19:28

Val, what about you? Likewise, what Gloria said, really looking at policies and processes and education and to also utilize, reach out to and utilize local and regional supports, whether it be in person, virtual, web-based. We have a lot of great resources and individual organizations, and it is truly amazing to the supports that are available. And Barbara, what's your advice be?

SPEAKER_02 20:04

I stress the evidence-based, the equity care. But I'd like to also encourage that the SPA resources I think are outstanding. And how I wished that I had those resources when I worked in primary care, when I worked in emergency, when I worked in renal dialysis, when I worked in the chemotherapy department, because at the time of diagnosis, patients are having those feelings, and they need the supports of those tools. And I would hope that the SPA long-term care would be extended to every area of health care. Because at the time of diagnosis, people are scared. So I would hope that maybe there'd be funding to increase these great resources.

SPEAKER_01 21:01

Thank you all for speaking with me today.

SPEAKER_00 21:03

It's been a wonderful conversation.ca