Episode Summary
Kath Murray sits down with Dr. Daphna Grossman, a palliative care physician with over 25 years of experience. Dr. Grossman shares compelling examples from her work with dementia and chronic disease, emphasizing the importance of early conversations, symptom assessment tools, and the critical role of care partners and personal support workers. This episode offers a warm, practical, and eye-opening guide to how thoughtful, wholistic care can be transformative and accessible, demonstrating how small shifts—like simple reframes—can have a big impact.
Episode Guest
Dr. Daphna Grossman’s career in palliative care has spanned over 25 years. She has provided palliative care for patients in multiple settings including at home, in hospital, long term care and in clinics. She currently works at North York General Hospital in Toronto, where her focus is caring for patient with non-malignant life limiting illness both in the inpatient and outpatient setting. She is the co-lead of Palliative Care for Non-Malignant Diseases (PCAND), a national community of practices. She also leads the Wellness Program for the palliative care fellows and residents at the Temerty Faculty of Medicine at The University of Toronto. Daphna loves spending time with her family and in her spare time is learning to play the ukulele.
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Transcript
00:00:10 (Kath Murray): Good morning, Doctor Daphna Grossman, it is great to be here with you today.
00:00:15,875 (Daphna Grossman): And as always, it’s wonderful to see you, though I always do prefer seeing you in person yearly at the conference.
00:00:23 (Kath): Collecting some hugs.
I want to introduce you. Doctor. Daphna Grossman’s career in palliative care has spanned more than 25 years. She has provided palliative care for people in multiple settings, including home, hospital, long term care and in clinics. She’s currently working at North York General Hospital in Toronto, where she’s focused on caring for people with nonmalignant life limiting illness, both in the inpatient and outpatient settings. She’s the co-lead for the palliative care for Nonmalignant Diseases and National Community of Practice. That sounds like, very exciting. She also leads the wellness program for the Palliative Care Fellows and Residents at the Temerty Faculty of Medicine at the University of Toronto. And, outside of work, Daphna loves spending time with her family, including her dear, handsome sweet hubby Matthew, and their family, and in their spare time is learning to play ukulele.
00:01:21 (Daphna): Though I’m not playing it on this podcast.
00:01:23 (Kath): So we want to talk specifically about integrating a palliative approach. So I often define it as the integrating, the principles and practices of palliative care for people with any life limiting serious illness early in the disease process and across all care settings. Tell me, how do you explain a palliative approach?
00:01:47 (Daphna): Yeah, it’s a great question. I think the first thing I start with is, is that when you hear the word palliative, do not think we’re talking about end of life and do not think that we’re talking about somebody imminently dying. We are talking about how to best care in a holistic, thoughtful approach, and provide care to a person with a life limiting illness along their entire health care journey. So what does that mean? Well, when we think about somebody with an illness, we think about how do we diagnose it, how do we treat it, how do we fix it, how do we cure it? And in these situations, these illnesses are not curable. We’re trying to manage it.
As we live longer with these illnesses, we have more symptoms associated with these illnesses. So, when you look at a palliative care approach, you’re talking about integrating the assessment, and addressing symptoms, including physical symptoms, psychological symptoms, social symptoms, and spiritual symptoms. And I think one of the other big pieces, it’s not just about the person, you know, it’s also about their care partners. Their care partners might be family, their care partners might be friends. But I think any of us who have cared for- for- for people with advancing, illnesses and advancing symptoms, we know what a toll it takes. And when we look at care partners, what- I’m talking about, you know, the the personal or the unpaid, but we have to remember that it also takes a toll on the health care providers.
00:03:32 (Kath): It’s huge. It’s huge, isn’t it? Now, you know, you’ve talked about the symptoms, but not just symptoms, but needs.
00:03:40 (Daphna): Yeah. So all together.
00:03:41 (Kath:) Yeah.
00:03:43 (Daphna): Exactly. So I guess I look at it in the framework of symptoms the psychosocial, spiritual, the physical symptoms. But that also envelops and includes what- what a person needs. And not only what a person needs, but what a person and their care partners, you know, their family and friends, understand about their journey, with this illness. Because, there are so many misconceptions about what happens as we live longer with our chronic life limiting illnesses and how do we make decisions or how do we help guide our substitute decision makers of what we would want if we ourselves don’t understand or don’t know what to expect?
00:04:32 (Kath): So you’ve- you’ve hit on a whole whole pile of things there, Daphna, that include education. So, I want to ask you about, well, how do you go about integrating a palliative approach. And I’m thinking that for you, one of the big pieces will be in terms of educating both staff, and people we care for, and their family caregivers.
00:04:57 (Daphna): So, I’m gonna- if it’s okay, I’d like to start with the person and the family caregivers.
00:05:03 (Kath): Go for it.
00:05:04 (Daphna): Okay? And I’d like to use dementia as an example.
00:05:08 (Kath): Perfect.
00:05:09 (Daphna): Just to ground our discussion in something very tangible. When I talk to people, to families of people with advancing dementia. For example, people I’ve seen now in hospitals who have come in because they have an infection, or because they’re no longer eating. What amazes me is the- is that- how surprised people are to hear that we- we- Dementia is a cause of death. And two, at the end of life, swallowing becomes more difficult, eating can cause severe symptoms, and at the very end of life, we stop eating completely. That is how we die of dementia. And in fact, one of the things I always say to people, which sounds so opposite to what- we what we know, because we always think about food as nourishment, right? Food makes us better. If you only eat, you’ll get healthier. And one of the lines I use again and again is when we stop eating in dementia, we are not stopping to eat- we’re not dying because we’re not eating. We’re actually not eating because we’re dying. Because our body is shutting down. And this comes as a shock. And what I hear over and over again is: “I wish I knew that.” And- and why is that so important? It’s so important because early on, when a person is diagnosed with dementia, and hopefully is still able to share their wishes and values, then you can have a discussion about what would be important to you as your dementia progresses. As you are, your abilities to do things become less and less. As more and more interventions- medical interventions are required to keep you alive, is- what would be the trade off? How much would you want to go through to live longer? So those discussions that advance care plan is so important, but can only happen if you truly understand what your journey will be with that particular illness.
00:07:22 (Kath): Then it comes right back around to “why do we do it early?”
00:07:26 (Daphna): Right!
00:07:26 (Kath): And- and so in- with- people with dementia, that’s clear, because they’re more capable and able to talk about those things. But really, for all of us, having some information ahead can be really helpful. As somebody who loves education, and thinks that education is one major tool, I totally hear you. What are some other ways that people can integrate a palliative approach to care?
00:07:51 (Daphna): One of the things is knowing these chronic illnesses come with symptoms, and many of the symptoms are outside what we would expect for the illness. So example, people with advanced heart disease, you think of “oh, okay, they’re going to become short of breath.” We know that. But they also suffer of pain, of anxiety, of lack of sleep, of fatigue, of decreased appetite, of constipation as some examples. So I think we need to learn and we need to have in our forefront that we need to assess symptoms. And going back to dementia as an example, you know, when you have somebody who is able to tell you “I’m in pain,” then you understand that, and you can- you can then address that. The issue of people with cognitive impairment is they can’t necessarily tell you they’re in pain. And what we have to do is develop tools and even standardized tools, and an approach, to say, “okay, I’m going to assess this person for pain, but I know if they have cognitive impairment, I have to do it in a different way. And I have to recognize that pain may look like somebody withdrawing, or it may look like somebody getting angry, or it may look like, you know, somebody who is resistant to care.” And- and that- that resistance to care, that sometimes can seem so frustrating, is really a expression of pain. We have to look at, you know, could is the person- person feeling anxious? We have to sit down and talk to them, and- and- and inquire about their story. For example, people come from different cultures and places, histories of trauma that are now brought to the forefront as they are getting closer to end of life. And we have to learn and understand their story, to present, to- to provide the best care.
00:10:02 (Kath): One of your key pieces, then, is in providing education and providing it early, and having conversations, and having those early. So much easier to talk about what if than it is when you’re in the crisis. But the other piece now you’re talking about, another very practical piece about integrating a palliative approach, is to use those incredible tools we have. So I’m thinking that some of my favourite for people with dementia, in terms of trying to gather information and identify if there’s pain. Is the pain AD? Nice and simple. Another one is the Faces Scale. And I think you like that one too, don’t you?
00:10:46 (Daphna): I wanna explain why I really like the adult Faces Scale. And it goes to the concept of the team. Okay? It’s always best when we can speak the same language. And if I say “I think someone is in pain, and I think they’re in really bad pain.” that might- you might say- look at the same person and say, “I think they’re in pain, I think they’re in moderate pain.” And I don’t know what your moderate is and you don’t know what my severe is.
But, when you use a pain scale, then you’ve got an approach to understanding exactly what everyone is seeing. So the Adult Faces scale is an example shows a person’s face with different amounts of grimacing. And you kind of look at it and you look at the person’s face and you say, okay, I think it’s a five- a six- sorry, because, look at that grimacing. The good thing about it is it’s easy to photocopy it, or copy it, and put it beside the person’s bed. And why is it important? So that everybody is looking and- and- and looking at that same scale. And when we look at teams, and it’s not just the interprofessional care team, it’s also the family- the family and friends, the care partner team. Because what you want to have is everybody speaking the same language. We want the- the family, or the what I call the care partner, because not necessarily family, could be friends. To to kind of say, “oh, I see, I understand what they were saying.” When- when- when I’m looking I go, “wow, you know, my dad looks really comfortable. It’s a two!” Or “no, I’m seeing that grimacing. It looks like a six, which means I need to go get get someone to- to make sure that- that- that my dad’s pain is attended to.” So- so that’s why I really like it.
Because, when I think of the team, it’s the health care team, it’s the person, and it’s all the care partners. We have to work together. We have to all be on the same page. When we talk about the- the personal support workers, and I would say especially at home, and in long term care or, you know, whether it’s the long term care personal support worker, is it a personal support worker from- from Ontario, well, from home care, which in Ontario is Ontario Health at Home now, or the hired personal support workers – They are so knowledgeable about the person they’re looking after, they really know those little subtle changes. That, for example, me as a physician who sees who cares for the person less often, I will always turn to them. And I think it’s so important for- for the personal support workers to share their assessment of symptoms, and to document it. It is so important because part of the provision of excellent care is the attention and the treatment of symptoms.
00:13:49 (Kath): Thanks, Daphna. When you think of, palliative approach, in what ways does integrating that approach make it easier and- to provide excellent care? And is there any way that it might make it harder?
00:14:07 (Daphna): Yeah. I guess my easier is, you know that you are providing excellent care. It’s actually in terms of it- I think it- it provides us, the health care providers, with less moral distress. Because what we are now doing is not just attending to, how do I fix the sodium? How do I fix the blood pressure? It’s really taking a very big wide lens to say, how do I address, how do I assess the symptoms, how do I address the symptoms, which may no longer be about fixing the sodium? You know, it’s a more holistic approach to care. And how do I ensure that the person, and the family, understand where they are in the trajectory of illness? I call that the palliative care lens. Using the tools for assessment, not only treating the underlying illness, but understanding where a more symptom approach to care needs to be integrated. Where it is part of the care of the underlying illness, or where it eventually comes the focus of the care, rather than the disease specific, focus and the goal- constant goals are care discussions, that constant explanation of where we are in our- in our journey with our life limiting illness. So I think it makes it easier because you really know that you are providing the best care possible. It’s harder because it’s a whole new framework of thinking. And like anything that’s new, which requires skills and education and tools, it- it- it takes energy and effort to get it going. But once it’s going, it’s easier.
00:16:06 (Kath): I so agree with you and I- I think when we’re dealing with things as they really are, which is the disease is progressing as we age and- and as we move forward in our illness. And to be able to acknowledge that and deal with things as they really are. Sometimes people say, “well, what’s the difference between palliative care and just really excellent person centred care?” And- and, you know, really excellent person centred care encompasses all of those things. It includes the person as the, you know, the- the goals, the focus. It includes family as part of the unit of care or as you say, care partners. And it includes knowing the- knowing the reality of life as- and the fact that we’re mortal. I think that- that palliative care, in so many ways, is just the essence of the best. When you think about- about the time that it takes to, integrate a palliative approach in all of our actions. We know that people in particular, let’s just say for a minute, for in terms of long term care, time is of the essence. Does this require such a huge increase in time or just a switch in how we do it?
00:17:23 (Daphna): Yeah, I- I don’t think so. In terms of I don’t think it causes an increase in time. I actually think it saves time. It- it- it’s just a switch in- in our approach. It’s- it’s learning a new approach that, I think- I think, as we get more proficient and it becomes normalized and it becomes part of our practice, it actually saves us time.
00:17:48 (Kath): Have you seen people do, and have you yourself done little things that seem to have a big impact?
00:17:56 (Daphna): Okay, I’m going to give you some little things. You know, this is such an interesting question because it came up the other day in terms of when a person says, “I want the best care for my family.” And then the question is, well, what does best care look like? Does best care necessarily look like being in the emerg department with an intravenous, you know, being hooked up to to things and having bloodwork done every day? Or does best care, and I’m going to take long term care as an example, is being at home, surrounded by the caregivers that- that know you, in a place that’s your space, attending to different aspects of your illness, not just what your sodium is showing, but ensuring you know that, you’re- you’re clean and taken care of, that you have your dignity, that you’ve got, you know, moist mucous membranes, you know, that you’re- you’re- you’re eating things that that you enjoy eating, right? Like, I- I think I’ve said this to you, Kath, many times, like, you know, if you end up being my substitute decision maker, I do not want to aspirate on Ensure. I want to aspirate on dark chocolate pudding. That is going to be my enjoyment. At the end, at the end of life.
00:19:15 (Kath): Now let’s just clarify. hopefully you don’t have to aspirate at all. But, what I think you’re saying too, is forget the Ensure. Give me really good chocolate pudding.
00:19:23 (Daphna): Exactly.
00:19:27 (Kath): And I think, are you the one that just wants the care plan with the diet intake as being chocolate-
00:19:33 (Daphna): Yes!
00:19:33 (Kath): chocolate?
00:19:34 (Daphna): I want a complete chocolate- dark chocolate though.
00:19:37 (Kath): Dark chocolate.
00:19:38 (Daphna): I don’t like milk chocolate. But, the thing is- is that, you know, caring means giving things or giving food that the person would enjoy. Not because it’s got more protein, or nourishment, or vitamins, or whatever. It’s because it’s- that is going to bring enjoyment. Caring means hanging up pictures so that, you know, all the care team knows who the person is. And sharing stories. Caring is playing favourite music or watching favourite shows together, because that was always part of your history and joy. Like for example, with- with your parent. Caring means, you know, brushing hair and putting on either like Vaseline or like gel to keep the mouth moist. Or it might be putting on lipstick if that was what was important to the person. And caring- caring to me is about allowing the person to really be who they are.
00:20:42 (Kath): I think about a comfort basket, and of course, you can’t have a comfort basket in a facility or in a home. That’s got so many regulations in case it’s carrying bugs. So many people have the trolleys. But I still loved the thought of a basket. And I think of the basket, and the things that someone might love and someone it might be a book of poetry, and someone it might be the songs, and someone might be, if they’re in a home setting, a candle, it might be massage cream. And I think of all those beautiful things that- that caregivers, care partners and the PSW’s, the nurses, the social workers, the music therapists, the docs. And I happen to know there’s a doc who sometimes sings to her people
00:21:32 (Daphna): But I will not do it publicly this time. I do, I- I- I love- I love music. It’s- it’s always something that’s been very important in my family. And when people have favourite songs, you know, it is truly amazing to watch someone, let’s say, with dementia, who hasn’t, you know, who can’t necessarily share their thoughts and ideas, start singing a song that they know. It is- It brings tears to my eyes every single time. It’s just- it’s like an awakening. I mean, there was a movie like that, and it truly is. It’s like it- It captures something in the brain that’s- that deep memory and that deep joy. And- and again, like, if I were to give one message is that caring isn’t just about all the medical stuff we can do in hospital. You know, caring is about taking care of that- the whole person. Including providing what gives them comfort and joy, like singing together.
00:22:34 (Kath): So, your thoughts about that beautiful care and how we best provide that is perhaps just one of the best takeaways. I love the idea that it’s not about “there’s nothing more we can do,” but it’s “oh, we’ve just begun.”
00:22:52 (Daphna): “We’ve just begun.” I love that! I’m gonna use that. I think that’s brilliant. “We’ve just begun.”
00:22:58 (Kath): Let me share. Let me show you. “We have just begun.” And the- this podcast series has really been about how do we from first encounter just gently open doors to conversations? How do we provide education so people know what to anticipate. And then, as we move along, how do we tune in to the individual, to the whole person, to all their needs. To prevent symptoms, and when symptoms arise, then how do we get on top of those right away? And how do we work well as a team? I think that those are some of the things that I just keep- keep hearing, keep seeing. Daphna, thank you so much. Thanks for being with us and hopefully we’ll get to talk again.
00:23:43 (Daphna): Thank you for having me. This has been a wonderful experience for me.
00:23:48 (Kath): Oh! I have to also say something else. This podcast is part of the HPCO Hospice Palliative Care Ontario’s education programming. Please go, we invite you to go to HPCO.ca for a full range of education opportunities and resources. And please join us for all of the Palliative Talks. A palliative care podcast.
