Episode Summary
In this episode, Kath Murray speaks with Dr. Kathy Kortes-Miller—social worker, educator, and author of Talking About Death Won’t Kill You—about rethinking how we support people living with life-limiting illnesses. Together, they explore how communication, compassion, and collaboration can shape more person-centered care in long-term and community settings. Drawing on research, lived experience, and humour, Kathy shares practical insights for healthcare workers navigating conversations about dying, death, and what matters most—including stories from hosting Die-alogues, a model similar to death Death Cafés, where people gather to talk openly (and often with laughter) about end-of-life.
Episode Guest
Kathy Kortes-Miller, MSW, PhD has a passion for palliative care and improving the end of life care for all. She is an associate professor in the School of Social Work and the Director of the Centre for Education and Research on Aging and Health at Lakehead University, Thunder Bay, Ontario Canada. Kathy was named the is the Lakehead University Research Chair on Aging and End of Life and is committed to improving the care provided at the bedside and in the community. She is the author “Talking About Death Won’t Kill You” with ECW Press and the co-host of a new podcast Disrupting Death; Conversations about Medical Assistance in Dying.
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Transcript
00:00:11 (Kath Murray): Kathy Kortes Miller, it is good to see you. And good to be here with you today.
00:00:16 (Kathy Kortes Miller): Likewise, Kath. It’s always good to have a conversation with you.
00:00:20 (Kath): Let me introduce you – start by introducing you and give a little bit of background about you. Kathy Kortes Miller, Master’s in Social Work, PhD, is the author of the book Talking About Death Won’t Kill You. A good book, a lovely read, and makes such good sense. Kathy has a passion for palliative care and improving end of life care at the bedside
and in the community. She is an associate professor and the director of the centre for Education and Research on Aging and Health at Lakehead University in Thunder Bay. Kathy is Lakehead’s research chair on Aging and at End of Life. She also co-hosts her own podcast called Disrupting Death, Conversation about medical assistance in dying. Does that sound right?
00:01:09, (Kathy): That sounds right. You betcha.
00:01:12 (Kath): She also lives in Thunder Bay, has a cottage outside of Thunder Bay, has a couple kids, a hubby who is also been involved over the years in hospice palliative care.
00:01:27 (Kathy): Yeah.
00:01:28 (Kath): Speaker and a wonderful friend. My name is Kath Murray. I am a hospice palliative care nurse, educator and author, and co-founder of Life and Death Matters. So Kath, this morning we’re going to talk about integrating a palliative approach to care. How do you define that?
00:01:48 (Kathy): Thank you. And before I start on that I just want to do a shout out. Kath Murray, congratulations on being honoured with the King Charles medal. I think that is fabulous for your work. So I just wanted to say that I neglected to do that earlier.
So a palliative approach to care is really all about living well until the end of life. When I think about what a palliative approach to care is, is that it’s very active care. It is creative care. It’s about focusing on the individual and the people that are important to them, and thinking about what is it that we can do to make the time that we have most meaningful and valuable for those most closely involved? So of course, it can involve things like pain and symptom management, which are really important and integral to a palliative approach to care. But it also really involves the conversations, learning about people and figuring out what matters to them.
00:02:48 (Kath): I love it and I love your words. “Active.” I love your word “creative,” and “meaningful, “and “valuable,” and not only for the person, but for those who are closely involved.
00:03:02 (Kathy): Yeah, I think Kathy, when you and I reach back into how long we’ve been doing this kind of work, and it used to be the case of people would say, oh, there’s nothing more that can be done. Let’s call in a hospice palliative care team. No, we know that this instead is the time when we need to amp up the caring. We need to think about the creativity and what can we do to make that time meaningful.
00:03:34 (Kath): Yeah, that word creativity is so is such a good word. I think that’s my word for today. But Kath, when people say there’s nothing more, then that’s when I just automatically go into that’s when hospice palliative care says we’ve only just begun. But now in the last decade or so, as you know, we have started to say, no, we haven’t just begun now. We have begun way, way back. So you have been part of integrating a palliative approach to care in a way that- in a unique way. Can you talk about how you’ve worked to help demystify death and dying in long term care in the community?
00:04:14 (Kathy): Yeah. Thank you. And so in my bio, you mentioned that I’mthe director of the centre for Education and Research on Aging and Health. And, that is a really cool initiative that was started by Doctor Mary Lou Kelly here at Lakehead University. And a part of the work that we do is that we do continuing education for health care providers around palliative and end of life care. And so we would like any good centre advertise to try and get as many healthcare providers we could to come to our education. And inevitably, I would hear from community members saying, that’s great that you’re doing that education for health care providers, but I’m doing most of the caring in my home or in long term care or I need to know what’s going on as well. So that really inspired our centre and me specifically to think about how do we build capacity in communities so that we can take better care of each other as well?
00:05:08 (Kath): You decided that one of the things that you would do would be to, have a little death chat in the community, and you figured that you would invite your best friends, anybody that owed you a favour, your family, your children, and that maybe 6 or 7 or 8 or 9 people would show up to this conversation about death. Can you tell us what it was and what happened?
00:05:35 (Kathy): Yeah. So we had thought, like many people, that death cafes were kind ofwhere it’s at to sort of begin organic conversations around end of life. But we heard from our community specifically that they wanted some educational pieces attached to that, which didn’t quite align well with the Death Cafe model. So we developed something that was-is called Die-logues, and- so we would be able to have that educational component alongside the conversations. And the very first one that we did, like you said, I kind of figured it would be people who owed me a favour who would show up. Instead, we had over 100 people show up. It was standing room only, and the biggest piece of feedback we got was that it was too noisy. Our community was so ready to talk about dying and that it was high energy. And the conversations have continued since then.
00:06:31 (Kath): Fantastic. Now, you- can you also do a shout out for the traditional Death Cafe model and just explain a bit about that? So people who might not want to do what you’ve done have some more information.
00:06:46 (Kathy): Yeah, I encourage people to check out the Death Cafe model. It is – this was originated through the work of John Underwood, who really sort of wanted people to come together in an organic way that there wasn’t a script or a goal or even specific education attached to it. It was people who would come around and talk about what their thoughts or questions they might have about dying, death, and end of life. And they only sort of specification that was really attached to that was there should be something yummy to eat and some tea or coffee to drink to create that sense of community. So when our community said, “hey, we’re interested in coming together, but we want the education piece.” The Death Cafe had put together some, you know, guidelines about what constituted a death cafe and what didn’t. So I contacted John Underwood at the time and he said, you know what? There is enough death to go around, get your community talking and do it how you want to do Just don’t call it a death cafe. So we call it Die-logues instead. And I know there are different models out there that people are doing to meet the needs of their communities.
00:07:53 (Kath): Now, you’ve also talked about how do you demystify death and dying in long term care. What are- what things have you done in particular there?
00:08:07 (Kathy): Well, I think long term care is a really important area where people need to be having conversations from the get go. When you talked earlier about how we have managed the upstream, some of the conversations we have, within the health care setting about a palliative approach to care, long term care is a great example of how this needs to be upstream, even from admissions, for example, that we begin those conversations to acknowledge that long term care is people’s homes. But that is where, ideally, when the care is able to meet their needs, that people are going to die. And so as a result, we need to be having the conversation about what is going to be important to people, what kind of questions they have, so that to use your term, to demystify that process so that people understand, that death is normalized, expected, and is part of the essential care that long term care can provide.
00:09:06 (Kath): One of the other terms that you use is “grief literacy.” I love that term. Can you explain to us what grief literacy means?
00:09:14 (Kathy): So we think about terms like death literacy or grief literacy. It’s about making sure we have knowledge and grounding and skills and experiences in the area of death and grief. And we know because, as John Cleese often says, “life is a terminal illness which is sexually transmitted.” We all have some sort of experiential nature with dying, death, loss and grief. And so we need to build our capacity to understand, to care for ourselves and to care for others in those areas. And so that death literacy helps us to understand what is the physiological process of dying and death, what are our systems’ responses to dying and death and grief that I say works, that helping us to understand not only what’s happening to us and our personal responses to grief, but also how to support other people who might be grieving as well.
00:10:08 (Kath): Wonderful, wonderful. When you think about integrating a palliative approach and different care settings, sometimes that can feel especially challenging because of lack of time, lack of staffing. Can you talk about time? And can you talk about those little things that- that actually are independent, maybe of time, that make a big difference?
00:10:37 (Kathy): Yeah, I think in many areas of health and social care right now, time is a challenge for people. But there are different ways that we can communicate that we care for an individual, for that matter, particularly if we are engaging in that palliative approach to care. And so it can be as simple as sitting down when you’re communicating with somebody, the humanness of touch. And it’s also that idea of if we don’t have the moments that are required at that time to follow up again, making that commitment that we are still responsive. It may not work for me exactly right now, but I will be back and I will have that information or I will ask someone else to come and make sure that you have that information. When we talk about the timing piece, we need to recognize that a palliative approach to care is not the job of one individual, that it’s really a team of people who can provide that care and be able to provide that information. The pain and symptom management, the essential conversations, but also in the context of the institution or in the organizational care. So when people acknowledge that, for example, in long term care, that how people die matters within the context of long term care, that we honour that and that we have some systems and supports in place. All of that serves to be able to communicate, this desire to be able to care for people while at the end of life.
00:12:07 (Kath): How do we build some of those things? How do we remember or or what do you do to encourage people to build those things into mission statements, vision statements?
00:12:19 (Kathy): I think mission and vision statements are really important, but I also think it’s the actions and activities and the way that we support the staff to be able to do good work that really matters. So if we’re going to have compassionate care in a mission and vision statement, we need to also make sure what that looks like for the staff and the people providing that compassionate care as well. And so I would say what that looks like at the bedside is providing opportunities. For example, if a resident dies, that the staff has the opportunity to honour that person, to recognize that they connected with them more than their job, that they developed a relationship with that person, and as a result, they may experience some grief and so knowing that as an institution or a home, recognizing how we can then support them, and that might look like developing some rituals after a resident has died. And so thinking of perhaps a special quilt, over the body, when the person is still in their room for the family to come see, it may be putting a sign on the door so that other residents know that a person has died. And being able to support the staff and the people living within that home community, around the death of someone who was important to them because they were part of that long term care home and community.
00:13:45 (Kath): You mentioned a moment ago about team. Do you have any suggestions of things you’ve learned? You’ve done some great work with personal support workers over the years. I think in your earlier days, you’ve you’ve did some incredible workon improving and excellence in palliative care and long term care. What are some of your suggestions to help strengthen team?
00:14:10 (Kathy): Well, communication is a big one, and thinking about that communication matters for all members of the team. And that everybody has something to communicate around the care plan for the residents. So thinking about what does that look like and making sure that everybody has a voice that can be heard, and also recognizing that the family or the social support to the resident are also important part of that care team, and an integral part. And so when we all come together as part of that team, we think about what is it that we can do to be able to provide the best care possible?
00:14:50 (Kath): Isn’t that a great, great way to look at it? Sometimes when we integrate something that is so meaningful, it can feel harder. Other times it can feel easier. You’re a social worker. You know about complexity. You know about things that- that- that things are sometimes messier versus easier. What’s your what’s your takeaway in terms of integrating a palliative approach, and what ways is it easier, and which ways might it be harder?
00:15:22 (Kathy): I would think one of the ways that it becomes harder is that people don’t always understand, what a palliative approach to care is. And I think that some of the language around, the care that we are providing as someone nears the end of their life becomes almost off-putting. We think that comfort care, for example, does not sound like it’s an act of care. We also think that if we are focusing on cure, that we’re giving up on someone, as opposed to focusing on quality of life until the end of life. So I think there are some language things that are a little bit challenging, but in terms of the complexity, I would say sometimes it is about being comfortable with strong emotion, and recognizing that when someone is dying and facing the end of their life, that they are going to have strong emotion, but so are the people that care for them. And as a result, as members of an interdisciplinary team, as part of a long term care home, that we need to be comfortable with that and we need to recognize that the emotions are going to be there, and we want to support the family and friends of the person who is dying. And we also need to take care of ourselves while we are doing that. And I don’t think that that is an easy feat by any means. And so that might be some of the messiness that I think you’re alluding to.
00:16:50 (Kath): Kath, you’ve talked about when there’s a death, and you’ve talked about something on the door or- or to let other residents know, that a death has occurred. There is a big impact when people have been living together, eating together, eating three meals together, and then all of a sudden somebody’s gone.
00:17:12 (Kathy): Yeah, yeah, I think that that is a big one. And, and some of the work that we did, we would often hear from people who would know that one of their fellow residents had died, but no one talks about it. And most of us worry when we think about things that we are fearful of at the end of our life. It’s about being forgotten. It’s about all of a suddenbeing there one day and gone the next. And so we need to think about, within the context of a long term care home, how do we acknowledge when one of the residents dies? Who tells the person that? And of course, we recognize that there’s confidentiality attached to that. But when that person is missing, when they’ve been sitting at the table with somebody, we need to recognize that person. And not only that, but also what it means for those people who are still sitting at that table and eating the meal and missing their friend and fellow resident. And so there are different ways to acknowledge that. We talked a little bit about having a sign on the door. I’ve also heard of other long term care homes that may have a picture of the person who has died, and it provides people the opportunity to share stories and memories, and acknowledge that they were here, and now they are no longer physically present and we miss them. And as part of the long term care home community, we need a chance to talk about that or communicate that. And I’d also extend it so that it’s not solely within the residents, but it’s also the families, and the social networks that come up and make long term care the place that it could be. And I remember hearing a story of somebody who had been playing once a month at a long term care facility and singing songs and playing guitar for years. And when one of the residents that was the biggest fan of that particular musician died, the musician dedicated an entire performance to that person, playing all of their favourite songs. And not only was that good for the musician, it was good for the whole long term care facility to be able to have that time to sing, connect and remember. So that’s what I think we need to be doing.
00:19:25 (Kath): Kath, thank you. Thanks for taking the time. Earlier I asked you, what are the little things? And you mentioned things like sitting down, like eye contact, like light touch. Like, sometimes a hug. So across the miles, a hug from here. From me to you and from from the team at Hospice Palliative Care Ontario. These podcasts, as you know, are part of Hospice Palliative Care Ontario’s education programming. And, you can go to the website for other education events. And please join us for any and all of the other episodes of Palliative Talks, a palliative care podcast.
00:20:06 (Kathy): Thanks, Kath.
00:20:07(Kath): Thank you.
00:20:08 (Kathy): And big hugs back to you Kath Murray.
