Episode Summary
In this thought-provoking conversation, hospice nurse and educator Kath Murray speaks with Rami Shami, a longtime palliative care provider and advocate, about how we can bring humanity, dignity, and cultural humility into end-of-life care. Drawing from decades of experience, Rami shares reflections on presence, vulnerability, and what it means to walk alongside someone in their final chapter. Together, they explore the emotional landscape of caregiving, trauma-informed care, the importance of honoring autonomy, and how small acts of compassion can make a lasting impact. With rich stories and deeply personal insights, this episode invites listeners to reflect on how we show up—for ourselves, and for others—when it matters most.
Episode Guest
Rami Shami has been serving within Hospice Palliative Care for over three decades. He feels hounoured to have worked in a multitude of roles and capacities across numerous organizations. Currently he shares his knowledge and experiences as a consultant, specializing in such person-centred approaches as Cultural Humility, Trauma Informed, Self-Compassion, and Servant Leadership. While harvesting a conviction that everyone should have access to quality, dignified, and person-centred care, Rami strongly advocates and supports the development and growth of programs and services for those travelling the journey of a life-limiting illness, caregiving, bereavement.
Podcast Evaluation
Click here to provide your feedback on this podcast episode.
Go back to the full list of episodes.
Transcript
Kath 00:00:10 Hello, Rami Shami. It is good to have you, to be together here, and to be able to interview you and talk about integrating a palliative approach in long term care.
Rami 00:00:22 Wonderful to see you. Always good to see you, Kath. And I’m excited to to knowledge share whatever we can to help support the palliative approach in long term care.
Kath 00:00:31 So let me do an introduction for both of us before we start. Rami Shami, you have been involved in hospice palliative care for over three decades. You’ve had multiple roles and numerous organizations, and currently you’re sharing your knowledge and expertise as a consultant. You are of the conviction that everyone should have access to quality, dignified, and person centred care. And you strongly advocate and support the development and growth of programs and services for those traveling the journey of a life limiting illness, caring, caregiving, and bereavement. Does that sound like you?
Rami 00:01:13 I love this work, Kath. I hope it sounds like me after, you know, over three decades. But, you can never encompass all the passion we have in this work. It keeps evolving. It keeps changing. It’s so organic, it’s so dynamic, so progressive. Yeah. It’s- it’s good stuff.
Kath 00:01:30 Pretty exciting, isn’t it?
Rami 00:01:31 Yeah, it is. Especially at this time- At this time. Right? At this time and age.
Kath 00:01:35 Yeah. Yeah. But what I haven’t mentioned is that at the Hospice Palliative Care Ontario conferences, which are fabulous and well worth going to, especially for the dance, that I hear rumours about you, and your dancing, and the costumes that you show up in.
Rami 00:01:55 You know, Kath, given the nature of our work, death, dying, trauma, grief, loss. It’s always fun to bring some joy, some, even at my own expense, you know, some laughter, some humour, some entertainment. So I think the HPCO conference, that gala night is the place to, to- to exercise those- those personal expressions, you might say.
Kath 00:02:23 All right, well, this year I hope that you will be there in full colour.
My name is Kath Murray. I’m a hospice palliative care nurse, founder of Life and Death Matters, or co-founder of Life and Death Matters, and author and educator. And our specialty is in education and developing, what I like to say: delicious and digestible resources. Meaning user friendly and engaging to help improve care for those with serious illness. Or as Benoît Robert mentioned, sometimes people are dying at the end of a long life of lovely natural causes and not related in any way to any specific illness. So here we are, and I want to talk to you about integrating a palliative approach in long term care and what that means to you. What are the words?What are the feelings that stand out to you?
Rami 00:03:18 What stands out for me, Kath, is really the growth and diversification of the principles and practices, if not even the accessibility of the principles and practices of hospice palliative care across so many domains. And one of those domains that we’re seeing a lot of people, not necessarily receiving a palliative approach, but they are going there to die, is in long term care. And as we apply those principles of, of- of a palliative approach within a setting such as long term care, people can experience a more- possibly, hopefully, a more dignified, a more person centred experience at the long term care. And I’m not going to say end of life. I’m not going to say necessarily life limiting illness because you mentioned, to receive a palliative approach, you don’t necessarily need a diagnosis. It can be applied to anybody in long term care, including those in advanced age.
Kath 00:04:11 You know, I love you’re talking about the principles and practices. So, hospice and palliative care, by definition, have just such wealth, wealth of definitions, principles, practices, philosophy of- of care. And- and so for me, I like to say that integrating a palliative approach, is integrating the principles and practices of hospice and palliative care early in disease or early in life, earlier in life, for people. Yeah, with any illness and across all care settings. And that just seems to make so much sense. End of life itself doesn’t have any definition, doesn’t have any, any Velcro to hold on to expectations. It just kind of describes a time but doesn’t describe that whole depth and beauty. So, when you think about principles and practices, and I know that there’s some that just especially sing to you, what- what are some of the things that you think of that are especially important that we remember?
Rami 00:05:18 Oh Kath, how much time do you have? You know, one thing I wanted to actually highlight before we continue on is that too often, and I think what is one of the maybe not necessarily a barrier, but, some resistance to a palliative approach within long term care is the fact that once families and caregivers, and staff even, hear the term palliative, they think it’s death. Dying. The person’s gonna die. And we know in palliative care people are living for years. And so recognizing that receiving a palliative approach does not mean the person is going to die tomorrow. It’s just an approach. And that’s why we’ve added the term approach. It’s taken the principles and practices of hospice palliative care and using them in the approach. We provide person centred care. And if you want to talk about some of the principles and practices. I mean, the common ones are pain and symptom management. But some of the more powerful ones and profound ones are being person centred, having autonomy and self-direction. You know, utilizing approaches such as culture humility, and personal culture to recognize the individual’s choices as they live in long term care that supports their dignity, their integrity, their values, their beliefs, their faiths, and their sense of personhood. And if we add one more piece to that, that’s really become a progressive approach to person centred care, is to recognize the principles and practices of a trauma informed approach. Which is imperative and aligns and intersects with the principles and practices of palliative care in- in aspects of choice, autonomy, empowerment, control, safety. These are all principles of trauma informed, infused in a palliative approach. And hopefully as we move forward in- in these- in these projects to be implemented within long term care across- across the country, let’s just say, but across Ontario for sure.
Kath 00:07:09 So let’s- let’s take those words one at a time. Person centred. You’ve used some words to describe that, But let’s take a minute to- to take that apart and- and look at that. What does that mean to you? What are the stories that you’ve heard of people who describe beautiful- who provided beautiful, person centred care?
Rami 00:07:28 Well, I think long term care is the perfect, perfect place to focus on being person centred. And what does person centred mean? It means the person has the choice, and the autonomy, and the self-direction to choose how they want to receive the care, how they want to live in long term care, how they even identify themselves. You know, Kath, something I’ve found fascinating in the last 30 years of being in this- 30 plus years, being in this privileged field, is that the reflective practice of our own mortality. The recognition and awareness that we are transient, that we are going to die, sometimes kind of self-advocates people to express themselves in ways they never have before. If we can create an environment of safety, control and choice, people have often times express themselves in ways even their caregivers and families have never seen or recognized before. That’s the beauty of a palliative approach is affording the environment, the safety, the empowerment of an environment for the individual to feel like they can step in their true expression of themselves. That’s person centred. Meaning they eat what they want, hopefully what they want, when they want. They receive pain management as they want. They receive suffering management. They have the opportunity to express their identity. They can change faith, religion, spirituality, values, identity, gender. Person centred offers the opportunity for somebody to self express in this time and space, which might change tomorrow, or change next week, or change in a year or two, depending on experiences of loss and anticipatory loss and the progression of their age and their illness, and the reflective practice of seeing their own death. They have a chance, an opportunity, to express themselves and direct their care as they see most appropriate.
Kath 00:09:16 So, Rami, when you think of that, you’re talking words like choice and autonomy. Choice is a- Choice is a fairly easy word, when you use the word autonomy. How do you see that- How do you see that? What’s an example of- of providing someone, allowing them their autonomy? Can you explain that word even better?
Rami 00:09:38 Yeah, absolutely. It’s a- it’s a difficult word. It’s a difficult word to use in health care let’s just say, because we have our boundaries, we have our roles, we have our duties. But what is autonomy really means? It means the fact that an individual can direct their life. How they want to be cared for, who they want to see, who they do not want to see, what they even define as family. Because the term family has changed in the past 30 years. I remember when I first started in the hospice palliative care, the term family was- was pretty much scripted for us. Mom, Dad, maybe a couple of kids and a couple of dogs. And you know, that’s- But nowadays people have an opportunity to exercise chosen family, found family. That’s part of autonomy. Even in choosing who we identify as caregivers. And even in choosing how we even identify ourselves. that’s the core of it, is a choice, and a control, and a safety. in- in defining what’s important for us, and how we want to move forward in our- in our lives, and specifically, in living in long term care.
Kath 00:10:41 You’ve talked about cultural humility and being nimble. Can you- can you talk to me about providing culturally safer places and what that might look like?
Rami
00:10:52
Well, I think there’s a distinction between cultural safety and cultural humility. And I just want to put a plug for the First Nations Health Authority out in B.C. You folks rock. You have an amazing website with beautiful definitions, and explanations, and resources on culturally humble, and culturally safe practices. Now I’m going to speak to culture humility, and culture humility is a powerful model of engagement to exercise and support person centred care. The foundation of a culturally humble approach, which I feel is perfect for long term care, and it’s a pillar of- of palliative care, is the idea that we all have a personal culture. How I identify myself, how I see myself, how I want you to see me, how I even, you know, I mean, there’s a whole aspect behind pronouns and- and how we- we know what names we use and what have you. We all have a personal culture that has numerous, numerous influences, which can be the traditional ethnicity and gender and, colour of your skin and the food you eat and the clothes you wear. But it’s even more than that. It’s the influence that we have all today, social media, education, political ideology, social economic background. And especially that diversifying aspect and individualizing aspect of- of traumatization. And- and what I love about cultural humility Kath is that it teaches you to be a learner of somebody else. You suspend, you know, your- how can I say? Your-
Kath 00:12:21 -knowing-
Rami 00:12:22 your- your parameters, right? And you’re truly present with somebody and afford them the choice and control to teach you who they are at this time and space. And nothing’s more person centred than that sort of approach. Who are you? How are you? What would you like to, you know, receive? How can we provide care for you? What would- how would you be like to even addressed and identified? You know how many people I’ve worked with, folks, that choose a name different from how they’ve been identified at birth? So in that perspective, cultural humility really intersects well with- with the palliative approach. And it’s perfect for- for long term care because of that learner, because of that, aspect of, of- of personal culture.
Kath 00:13:04 I adore the work that Harvey Chochinov and his team have done. And love the question that he asks, which is: “What do I need to know about you to provide you with the best care possible?” And Holly Prince has taken that and added: “What do I need to know about you, and your culture, to provide you the best care possible?” And- and, another friend who’s added: “What do I need to know about you as a person to provide you with the best care possible?” I think about that, but I also think about people in long term care who are- who are one year in, wanting them to be nimble, and humble and learn how they’re in the midst of providing so much care in such a short time. Do you have examples of how that’s played out? Do you have thoughts on that, on how to do that in a- in such a task oriented place?
Rami 00:14:01 Yeah. And that’s the- that’s the operative word, Kath, is “task oriented.” I don’t think it takes that much time to be person centred. I don’t think it takes that much time to really receive the autonomy of somebody, being mindful of even how I enter a room, what energy am I bringing in? You know, Kath, I’ve seen it. If I bring in a specific vibe of myself, I’m not mindful and aware of it. Sometimes the person feels it and their nervous system picks it up before I’ve even entered the room, and they shut down. They close up, they- they don’t see my openness in my- my connectivity. So I think for our practices that we can-we can instil as part of a palliative approach to make it so that we are more present and feel like we have more time.
Kath 00:14:44 So, you talk about reflective practice there, and you talk about being nimble.I think of reflective practice as being such an important piece of all of the work we do. And it ties back to what you said earlier about working in this field. And being changed by the fact that we’re caring for people who are living, and also are closer to death than we are.
Rami 00:15:10 There’s a challenge and a struggle, but also a beauty in- in living in long term care, because we watch people change. We watch them change as a result of deterioration of their function, their bodies, their activities, their minds. Right? And as they change, so does oftentimes their sense of personhood. Who and what they are, how they identify themselves. You know, and that’s an opportunity for us, which is a pillar of a palliative approach, and the nimbleness to be mindful of how is a person changing day by day, in who and what they are, and how they are what they want, so that we can actually be person centred. And that’s the beauty of long term care. Because people stay there for, oftentimes, years. I’ve seen too often, Kath, where somebody, you know, facing a change in their lives. The palliative approach, honestly, you got me fired up now, palliative approach should be applied, in my mind, even before somebody is admitted to long term care. If we look at a palliative approach, even in the- in the transition of coming to a place where they are probably not gonna leave. That’s a huge change in their personhood. That’s a huge change. I mean, that’s why we focus on autonomy, because so much of their choice, their autonomy, their sense of personal culture is changing. If not being lost. And our nimbleness is to be aware of that, to recognize it, to support it. And I’m not saying sit there and learn about like, of course, you know, PSW’s, and nurses in long term care, and social workers, are some of the hardest working people on the planet. I’m not saying that we have to sit for hours and learn who and what this person is. But maybe if we recognize how they might be anticipating loss, if they’re grieving, if they’re in some aspect of expression of traumatization, if they have some story of who and what they are, that’s exacerbated now because they’re in a place where they’re not going to leave. There’s so much changes that happens to a person when they come to long term care and a palliative approach, just the approach and the principles and practices, is so well aligned to support those changes.
Kath 00:17:14 I don’t usually use the word loved one, but I think about how hard it is for people who are loved ones, to drop- to leave someone. I know that we’re not just dropping them, but to leave someone. And I sometimes share a story of something that happened after my father died. And- and on occasion, I’ve shared it with families when families have been embarrassed about their behaviours, and I say, it’s hard being family, it is hard being family. And we need to remember that as we see those families, as we get to know them. You talk and you- you are so keen, committed to, integrating a trauma informed approach. And I think you said earlier how that does so dovetail with a palliative approach. Talk more.
Rami 00:18:08 Well, if you look at the prevalence of traumatization of just Canadians, who have at least experienced one traumatizing event in their lives, let alone the history of people’s stories for the past 30, 40, 50, 60, 100 years. There are going to be implications and experiences of traumatization. And then these individuals come to live in long term care. And those experiences of traumatization don’t just go away. Sometimes when we create environments of safety and love and- and, you know, nourishment and what have you, sometimes that gives an opportunity for those expressions that live in our bodies, ’cause they are somaticized in our bodies, to surface. And I think staff are not equipped in long term care to- to recognize and manage those experiences that surface. I’m not talking about trauma therapy. I’m just talking about being informed of what trauma traumatization can look like, feel like, and behave like. And so if we have a trauma informed approach that focuses on the principles that really intersect beautifully with a palliative approach, the whole aspect of autonomy, and self-direction, and empowerment, and choice, and control, and safety. Who defines safety? How does a person define safety? How does a person feel a lack of control or gain a control? How can we, you know, foster a sense of control? How can we improve opportunities for choice, when so much choice is taken away, when somebody is admitted into long term care? And how do we, you know, how to even garner their- their- their experiences of self-empowerment? Because coming to a long term care, especially if they’ve been admitted, oftentimes, not necessarily that they didn’t want to go there, but they’re not necessarily keen on going to a long term care. Then there’s a loss of sense of power, sense of self power, a loss of empowerment. So if we can focus on these principles, we can truly be person centred. And that’s a trauma informed approach.
Kath 00:20:07 Rami, thank you so, so much for your time and for your insights. And, as we how do we best integrate a palliative approach in long term care, I think we learn from one another. We give to one another, share with one another. This- this podcast, as you know, is part of the Hospice
Palliative Care Ontario education programing and encourage people to check out the HPCO.ca Check out the different education offerings. And join us for any of these podcast series. And Rami, as- as we continue to work together across the miles, I express gratitude for the work that you’re doing. The passion you bring, your care and concern for individuals. Both those we care for, those we work for, and within ourselves. Thank you so much.
Rami 00:21:11 Thank you, Kath. It’s an absolute privilege and honour. A big thank you to you, Kath, a big thank you to HPCO for championing this, and a huge thank you for all those who work and serve in long term care.
Kath 00:21:22 Absolutely.
