How do we ensure that Indigenous people receive palliative care that aligns with their culture and spirituality? In this episode, guest host and researcher Mary Lou Kelley has a conversation with Jeroline Smith, a retired nurse, Elder and Knowledge Keeper who has made significant contributions to palliative care for Indigenous people. Jeroline talks about the importance of community, the need for more training and resources, and the need for more long-term care homes in Indigenous communities.
Jeroline Smith is a retired nurse currently working as an Elder and Knowledge Keeper to advise the work of Canadian Virtual Hospice, the Lakehead University Centre for Education and Research on Aging and Health, and the regional home care program in Manitoba. In 2019, she received the Award of Excellence from the Canadian Hospice Palliative Care Association, and has made significant contributions to several national palliative care initiatives.
Since 1972, researcher Mary Lou Kelley has been engaged in gerontology and palliative care practice, teaching and research. She has made major contributions to research in long-term care, and rural and First Nations communities, using participatory, community development approaches to empower and support community members and front line workers.
Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/
How do we ensure that Indigenous people receive palliative care that aligns with their culture and spirituality? In this episode, guest host and researcher Mary Lou Kelley has a conversation with Jeroline Smith, a retired nurse, Elder and Knowledge Keeper who has made significant contributions to palliative care for Indigenous people. Jeroline talks about the importance of community, the need for more training and resources, and the need for more long-term care homes in Indigenous communities.
Jeroline Smith is a retired nurse currently working as an Elder and Knowledge Keeper to advise the work of Canadian Virtual Hospice, the Lakehead University Centre for Education and Research on Aging and Health, and the regional home care program in Manitoba. In 2019, she received the Award of Excellence from the Canadian Hospice Palliative Care Association, and has made significant contributions to several national palliative care initiatives.
Since 1972, researcher Mary Lou Kelley has been engaged in gerontology and palliative care practice, teaching and research. She has made major contributions to research in long-term care, and rural and First Nations communities, using participatory, community development approaches to empower and support community members and front line workers.
Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/
Welcome to the Strengthening of Palliative Approach in Long-Term Care Alliance Podcast, exploring challenges and best practices and palliative care approaches for individuals in long-term care.
Nanci (00:15):
Today on the podcast, we're joined by retired nurse, elder and Knowledge Keep keeper LY Smith and guest, host and researcher Mary Lou Kelly to talk about Lyn's career as an indigenous nurse and her many contributions to palliative care for indigenous people. Welcome to the podcast ly and Mary Lou.
Jeroline (00:35):
Thank you.
Mary Lou (00:36):
Wonderful to be here.
Nanci (00:38):
Mary Lou, thank you for being our guest host today for this important conversation. I understand that you and Jeroline have known each other for some time now.
Mary Lou (00:46):
I met Jeroline in, uh, about 2015. Um, so Jeroline, you've had a long and important career as an indigenous nurse in which you've made many contributions to clients, your community and national palliative care initiatives. Now you're retired and working as an elder, helping to advise and support the work of the Canadian Virtual Hospice Lakehead University Center for Education and Research on Aging and Health, their Palliative care education, and the regional home care program in Manitoba. So we are so grateful that you're willing to come and share your time and insights with us today.
Jeroline (01:28):
Thank you very much. Mary Lou.
Mary Lou (01:31):
Can you tell us a bit about your career as a nurse, how it got started, and how you became so passionate about palliative care?
Jeroline (01:40):
I actually started, um, in the healthcare when I was very young. I was a volunteer. I was a candy striper in those days. And, uh, it just so happened that the, the first patient I had to look after was, um, end of Life Care, and I sat with him until he passed. Well, I became a healthcare aid. From there I laddered up to, uh, L P N and from there I went into my RN and, uh, just kept on going from there. And, um, ended life care as it was called then. Um, I became passionate and it, when I was working in the north, and, um, when I came back to the South, um, you know, finding out there wasn't any palliative care then in, uh, first Nations, I didn't really know what that word was. And in the early nineties, I, um, started presenting about palliative care across Canada through home care, first Nations Home Care, help setting up that program. And, um, I've just been passionate with it ever since.
Mary Lou (03:02):
So you've had so much experience and, and as you said, sometimes starting the conversation is a bit difficult. Can you share some of your wisdom about how you introduce the topic of palliative care and how you go about supporting people at the end of life?
Jeroline (03:25):
What a lot I have learned is from, uh, the community in Peguis. I was away for a number of years and I went back, uh, to work there. Seems in a, in First Nations, everybody knows you. They know your family background and where you're not known, I just, you know, go in and introduce myself. And, um, usually by then I'll know what the, you know, I've been contacted. I know what the diagnosis is, I know a little bit about the family, and, um, I just go in and, and introduce myself, speak to them, and ask, how can I help? What do you need? And I, I sit and I listen to, uh, what they are saying. And it's, it's a great honor to be there. Uh, you show a lot of respect and not to say the same time you realize, uh, working with the family u use and, uh, listening to them, that's where it comes.
Jeroline (04:30):
Can they stay at home or not? Is there, is there family members who can help out the equipment? Can you get the equipment? Can you get the medication? You know, in the, in the south it's easier to get medication in the north, not so easy. Also in the north, it depends on the size of the community and the, uh, number of staff. Is there enough staff in, you know, in that community there may only be one nurse and one healthcare aid. So a lot depends on that. And is their doctors available? Is their family members willing to look after that medication? So, you know, they want to stay at home. They don't want to be taken from their home, from their community.
Mary Lou (05:23):
Jeri, I remember you telling me that sometimes, um, you know, when, when you start these end of life conversations with the family about all the things you mentioned, it's a real relief to them because nobody's really talked to them about it before, before you come.
Jeroline (05:46):
A lot of times they weren't spoken to about it. They didn't even know, um, you know, their diagnosis and they don't realize they were that sick. And once they realize what their, you know, you talk to them and let them know what do they want? They wanna stay at home. They don't want to go to the big centers. They don't want to leave the communities because they know if they leave, they, they won't come back. And that comes from, uh, from history, from trauma, from leaving home, you know, compounded, uh, things that have happened to them leaving home, are they gonna come back or not? That's one of the big fears there, you know, in the community. So you're gonna do your best to keep them at home if the resources are there and the, you know, the family are there to help because you, you know, you, you may be the only person there. And, uh, so then you're speaking to the whole family then to see if, if they can care for their loved one. And it's a lot of dignity. The men, they want their sons to look after them, to wash them and care for them. You know, they don't want any, anybody else to do that. So, uh, we respect all that. We respect what they're, what they're telling you.
Mary Lou (07:23):
That's such an important thing for people to understand. Are are there any other things about culture and spirituality that you would like to really emphasize?
Jeroline (07:37):
Oh, there is so much about culture and spirituality. Um, no two communities are the same. They're all different. That's why you're listening. You're really listening. So good on what they are saying and what they want. And, uh, you know, they want ceremony while you're there. You respect that. And, uh, sometimes you'll, uh, you have a family and you may have, uh, Christian and traditional. So sometimes you're sort of a referee and they're, they don't want to give those pain meds or, you know, it's gonna put them to sleep. They're gonna get addicted. There's so much in there. And they, you know, and then the other way is we never ever say, don't take your traditional meds. We always let the doctor know they're on traditional meds, but the, they do take those traditional meant. And, uh, you know, it was just such an honor to be there and, and to learn about, about their cultures and about their ways.
Jeroline (08:52):
There is a lot of ceremony that the families go through and you as, um, as a nurse, as a helper, we're there just to, to help them and give them guidance and not love when, when the family needs it, we don't tell them what to do at all. They have done that kind of care with their people for many, many years. And, and, uh, you know, those helpers just come in and start helping with the family. There's always two family members to look after their meds, um, and, uh, you know, keep count. And, um, one of the things we had talked about before was, uh, a memory book. I always take, take in a booklet and a book and give it to the family to write it and, uh, whether they have visitors or not, or, uh, who's been there, what have they've been talking about. And it's also used too, as a med book when they've given them their medication. So with that book afterwards, they can look back in that book and see what happened this day, what happened that day, because often they don't remember a lot. And we're always talking to the patient, to their loved one. We're always making sure that they know what's going on, that they can hear what's going on.
Mary Lou (10:33):
Jerry, you've been such a champion nationally for improving access to palliative care for all indigenous people. Why do you feel so strongly that having access to palliative care is, is important?
Jeroline (10:48):
Cause um, they've looked after their own for years and years. Now. The tools are there. You can tap into all the tools out there, the doctors, the medications, the equipment, it's all there available. They should, why shouldn't they have it to care for their loved ones?
Mary Lou (11:11):
Because the access to the medication and some of the medical expertise is, you know, complimentary to, to all their community love and support.
Jeroline (11:25):
My first patient was in the early nineties in Peguis, and, uh, we had no palliative care. We didn't have anything. So we thought, well, how can we get equipment? So the staff got together and, uh, they held to community bingos to raise funds for equipment. And out of those funds, they bought the electric bed, the special mattress bedside table, everything a client needed. Once we had that equipment, we could take somebody home. We went to the senior home and borrowed their van, asked if we could borrow it. We got our driver and we got one family member. The son came, we all met at the hospital, and, you know, we took him home and he was so thankful to, to be at home. And it was there too that, uh, I learned a lot about ceremony through that family. And, uh, after he passed, what was done, the, the fire started outside and it burns for four days also.
Jeroline (12:45):
Uh, when he did pass, the windows were all opened to let the spirit go. And it was a family who, uh, looked after him, did the cedar bath, and put on what he was gonna wear. I always leave it up to the family to call the funeral home, have them call so they have time to visit with their loved one to see their goodbyes. Throughout all that you have community members visiting, uh, you have community members pulling together. They bring food, they come over, tidy the house, they sit and visit with the family and support them.
Mary Lou (13:33):
You know, when you, you talked about, this is your first client in the nineties. Now, you must have seen a big change in the home care program by the time you retired in 2015, largely through your own advocacy for all the things you mentioned.
Jeroline (13:51):
Now we have, uh, we have the palliative care doctor will go out to visit in the home. We never had that years ago. Uh, we also have the paramedics on the ambulance too, that do visits. There's only eight long-term care homes in all of Manitoba and First Nations. But those clients at the same time, if they want to go home, I know in pegs they are, they can go home and, and pass at home, and family will look after them. It's up to them, it's up to the family to do that. But in a long-term care home too, staff are trained in palliative care in the South. I know there's a lot that have taken Lake hit horse. They don't have that in the north. They don't have the connectivity for that too in a lot of the communities. So, you know, it's, that is really needed, um, in, in long-term care and, uh, you know, a a lot more homes in those communities. So they, when somebody is palliative care, they, they get to stay in the community. They don't have to go out and go to a hospital in a big city
Mary Lou (15:09):
Because many indigenous people are being cared for in long-term care homes that are not indigenous homes. Mm-hmm. <affirmative>. And that's because, as you pointed out, there are so few at this time, uh, indigenous long-term care homes. What advice would you give, uh, to the non-indigenous long-term care homes?
Jeroline (15:30):
Community members, family go to visit when they're in long-term care homes, people just drop in and visit. Uh, you know, there is no visiting hours. We have to remember, people travel many miles. They travel from another province to come and visit with their loved one, whether it's two o'clock in the morning when they arrive, they wanna be there. So when you get a lot of people coming in, that's normal for indigenous people. If they're in their own community in a long-term care, home community can visit, family can visit, they don't have to leave their own community. That's so important to, to keep them at home.
Mary Lou (16:19):
I wonder if you can leave us with a few key messages, uh, from your experience, particularly directed at staff who are learning to do palliative care. Uh, may be working in a long-term care home
Jeroline (16:40):
From the work I've done in palliative care. You have certain workers that are so wonderful in palliative care, and just remember some of, some of your workers can't do that. And in that long-term care, they're at home. So, you know, we'll continue to, uh, to work on getting those long-term care homes in communities up and running to keep them home and have communities stay staff trained to look after their own as they have been doing for many, many years. It's, it's the resources and the training.
Mary Lou (17:25):
Thank you so much, Jerry, for sharing this time with us.
Jeroline (17:29):
Thank you very much. And it's been an honor to be speaking with you.
Nanci (17:35):
Thank you so much for sharing your wisdom and for all of the work that you do for indigenous people and for all of us in Canada. We all have a lot to learn from you. And Mary Lou, thank you very much for being our guest host today. It was a pleasure to have you both on the podcast. And thank you again so much for joining us.
You've been listening to the Strengthening a Palliative Approach in Long-Term Care Podcast. For more information about our project, visit spawn ltc.ca.