Episode Summary
In this heartful conversation, Kath Murray speaks with Dr. Ben Robert, a long-term care physician and palliative care advocate, about what it truly means to integrate a palliative approach across care settings. Dr. Robert highlights how this approach goes beyond managing symptoms to focus on what matters most to individuals. He also sheds light on cachexia, a complex condition often misunderstood by families, where weight loss and decreased appetite occur despite nutritional intake. Together, they explore the importance of relational care, the vital role of personal support workers, and how to normalize frailty, decline, and death with compassion and clarity. Through poignant metaphors, practical stories, and personal reflections, this episode offers a meaningful look at how caregivers and healthcare providers can support quality of life at every stage.
Episode Guest
Benoît Robert completed his medical training at the University of Ottawa in 1986 and has been practicing at the Greenboro Family Medicine Centre since 1988. His interest for palliative care and frailty informed care has been developed through his experience in long term care. He is currently the Chief Medical Officer at Perley Health, and an attending physician at the Glebe Centre, as well as at the Ottawa Hospital. He is one of the founding members of the Ottawa South Palliative Group. He has published and presented on the palliative approaches to care for people living with severe frailty. He sits on local and provincial tables advocating for those living with frailty.
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Transcript
Kath Murray 00:11:06 Hi, Ben. Good to be with you today.
Ben Robert 00:14:22 Hi, Kath. Thanks for inviting me. I’m looking forward to this conversation.
Kath Murray 00:19:20 Let me start by introducing both of us. Ben is a physician specializing in long term care, seniors health and palliative care medicine. He is a medical director of Perley Health in Ottawa, and was president and long time board member of the Ontario Long-Term Care Clinicians. And Ben I understand you’ve also served as a coroner, practiced in pediatrics, obstetrics, surgical assisting, and worked in the E.R. at Children’s Hospital of Eastern Ontario and continue to provide comprehensive care.
Ben your passion and your values are all about palliative care. A palliative approach to care,
particularly in the home care setting or in the home setting. And you work with the Ontario Health East Region in the palliative care portfolio.
Ben Robert 01:10:16 Yes, that’s right. Thank you. Yes, it sounds impressive how you put it.
Kath Murray 01:19:13 Incredible. Very exciting. My name is Kath Murray. I’m a hospice palliative care nurse, educator and author, and founder of Life and Death Matters and a passion like you for all things palliative. We are specifically talking today about integrating a palliative approach in care. And I define that as the integration of palliative care principles and practices for people early in disease with any illness or frailty and across all care settings. When you define or describe to families or individuals a palliative approach, how do you explain it?
Ben Robert 02:02:10 It’s a very good question. I think it’s important to differentiate between what we see on TV in the context of palliative care, where people are actively dying, versus a palliative approach to care, where you’re focusing on what matters for people.
So as an example, if someone has an elderly grandmother with diabetes and she would want a donut, the focus is on enjoying the donut rather than on managing the diabetes very strictly. And so for me, that would be an expression of a palliative approach to care where it’s important to live well. And that’s what it is in my mind.
Kath Murray 02:43:04 I have heard so much about you and unfortunately, we haven’t met face to face. But I’ve heard so much about you. And one of the things I understand is that the word relational care or relationships really matter to you.
Ben Robert 02:56:09 Oh, absolutely. So I do work in long term care, and I also provide care in the hospital setting. And I’ve come to sort of differentiate the two approaches where, you know, in the hospital setting, I’m focusing more on treating diseases, curing things or managing things, and it’s very transactional. I fix this and after that you’re discharged and I may not meet you again ever. Whereas in long term care it’s much more about relationships. It’s about managing. It’s about the day to day things. And so I’m treating you as a person and I’m looking after your medical and social and whatever needs I can. And, at the same time, I’m working with whatever disease conditions you have, but it’s much more relational. I spend more time with you and I focus on what it is that’s important for you, rather than fixing what’s important, what the problem is.
Kath Murray 03:54:07 Well, then I think that so many of our chronic illnesses, we can’t fix things as much as we can, just palliate. Now, one of the other things that you have mentioned when I have described previously about integrating a palliative approach for people with any serious life limiting illness, and you have said sometimes people don’t have illnesses. So tell me about that. People who are healthy, wo are aging and aging out.
Ben Robert 04:18:13 Yes. Thank you for bringing this up. You know, the World Health Organization talks about a palliative approach, in the context of diseases. And in my line of work, in long term care, a lot of people live with frailty and frailty in and of itself is not a disease process. It’s a manifestation of fragility, sort of the burden of diseases, the burden of medications. And so as a result, I think it’s better to look at a palliative approach in the context of how people are, so conditions, and and how they’re functioning rather than in the context of diseases.
And in my mind, you know, I look at frailty, a little bit as a, as an overloaded canoe, where the,
the burden is sometimes just only aging, but oftentimes is a burden of you know, cardiac disease in the context of congestive heart failure. Sometimes there’s chronic obstructive lung disease, chronic bronchitis. It might be some dementia, there might be diabetes, some complications of diabetes, kidney illness and so on. And all that gradually weighs down the canoe so that over time, there’s maybe just an inch or two between the water level and the top of the gunnels.
And so somebody can really can be living with quite severe frailty. But if that lake water is very still that that canoe will float for a long, long time. But it doesn’t change the fact that people need to be aware of how fragile the situation is. In my mind, that how fragile the situation is, because small waves or small headwinds and in the past could be sort of negotiated very easily, can become quite problematic. And sort of essentially life threatening or certainly, threatening to living well, should they occur.
And education is such a part of preparing people for this loaded down canoe. So, absolutely. I think that if people are unaware, that there is a fragile component to people’s health when they’re living with frailty, it robs it. It robs both the resident, in the in the context of long term care and the family of time to focus on, on what’s important.
You know, another way to sort of explain this is if, if I’m having a birthday picnic and I’m aware it’s going to rain heavily in the early afternoon, I might do things very differently than if I were unaware that it’s going to rain in the early afternoon, and so I might do away with the important things, the stuff I want to say, the stuff I want to happen earlier on in that picnic. And if it doesn’t rain, I’ve got more time. That’s great. But I’ve done I’ve gone through and I’ve experienced the important stuff for me. And, and I think not appreciating how frailty impacts, sort of the mortality and the possibility for enjoying things, I think robs people of good times.
Kath Murray 07:39:12 I love that. One of my favorite questions is when people don’t want to talk about dying or about declining, that’s fine. We don’t need to talk about it. But if you were dying, would you want to? If you were, in fact, if the team thought that you had very limited time or that you were maybe sicker than you are, would you want to talk about it then? And that thing about you being able to plan for the picnic and put front load the things that are really important to you, such a practical, such a practical thing.
I think of the personal support workers who do that on a daily basis, when they know that family are coming that day, or they know that there’s something big that’s happening, and they help preserve strength today so that the strength will be there either for tomorrow or for this afternoon
Ben Robert 08:32:22 Oh the PSWs are saints, you know, knowing that family members coming and the work that they do to get the resident ready and looking the best they can and as alert as possible so that the time together is the best possible time. And they do that and, you know, day in, day out, you know, throughout the year and with a smile, I mean, I can’t say enough about them.
Kath Murray 09:01:02 Tell me another couple stories. I’m a fan also of personal support workers. But tell me, tell me another example of PSWs who get it in terms of specifically about the palliative approach.
Ben Robert 09:18:16 I don’t know where to start. I guess when I maybe on a different tangent, I do remember a time when, one of my residents was actively dying. I didn’t expect, him to survive more than a couple of days, and it looked like he was in a lot of pain at the time. So I buzzed the nurse and asked her to come in with some medication. And in the interim, one of the therapeutic recreation therapists, sort of came in, pulled out her guitar and started strumming and singing. And in that time frame, the resident just settled down so that by the time the nurse came with the medications, which was a very short period of time, by the time she came, it was no longer needed. And so I think, you know, I talk about PSWs, but really, it’s the whole team, right? These little things that make people’s lives better, is what’s important. And that’s the essence of a palliative approach. We’re trying to make people’s lives, as enjoyable as possible with the time we have.
Kath Murray 10:19:19 Sometimes people can be so pushed with the number of residents they’re caring for, the number of medications and procedures that need to be done, that it’s hard to think of adding one more thing. In what way does integrating a palliative approach take more time? Does it take less time?
Ben Robert 10:41:06 Again, we’re going back to this transactional versus relational care. A lot of care in long term care is measured for bureaucrats in a transactional fashion. And I think that’s what takes the time away from the relational aspect that people have to struggle. I do think that if we have time to make connections with people, the stress of time, or lack of time, of timelessness, if you will, becomes a lot less because you’re having a deeper connection that transcends that sense of pressure, of, you know, of measuring something when in fact it matters very little in the context of the situation.
Kath Murray 11:27:08 I think of little things that just don’t take a lot of time. But that can have real rewards. So I’ve got a couple things in my mind. But what are some of the little things that you see that are just that just have profound influence?
Ben Robert 11:44:04 I think that a lot of the people I work with have patience. So if somebody is wanting to have a sip of water as an example, and it takes that person a little bit longer to find the straw, to sort of put it to their mouths and so on. I think that that patience, that kindness and compassion that that is there at the moment is really what makes a difference. People sort of, taking the time to be in the moment with the person. It feels effortless, but it’s so impactful. When you’re there with the person at the time and I think that’s what compassion and caring is, for the most part.
Kathy Murray 12:32:00 And just that, that attitude of patience that I think, you know, the personal support workers, the nurses, the, the team who have been doing this for years and decades and have had their hearts all in. They must kind of roll their eyes when we talk about integrating a palliative approach and think, man, we’ve been doing this, we’ve been doing this compassion, we’ve been doing this patience, we’ve been doing relational care. We’ve been doing it for years, Ben, and Kath, before you guys came around.
Ben Robert 13:07:07 The team I work with, they don’t roll their eyes, but they do. I don’t want to put words in their mouth, but they probably are thinking it’s about time, that people understand where we’re at and what it is we do. You know, the frailty in long-term care is not a surprise. For those of us who work in long-term care. But it certainly was a surprise for those who don’t, you know, Covid sort of showed us how surprised the rest of the world was. In other health sectors. For those of us who work in long term care, we are bracing for, what Covid had to, throw at us. We had a very good idea that what we saw is what we were going to see.
Kath Murray 14:05:00 So when I mention about people maybe rolling their eyes at us, I think that there have been people just providing such beautiful, beautiful care forever before we brought in any thought that we could, as palliative care specialists, add anything in. But one of the things that I think we have brought is also helping to not only those who are in there who know this, but talking about it and normalize that people are here. This is their last and for many of them, this is their last home and for their families that their loved one is dying. Can you talk about just that whole thing about how you normalize dying and death?
Ben Robert 14:38:04 Yes. It’s, you know, some families are more ready than others, but, you know, I do spend a lot of time at conferences, at our care conferences, with families and discussions. I’m trying to sort out what matters and ensuring that the trade- offs that are being sort of discussed are worth it for the resident.
So, as an example, if going to the hospital to treat a pneumonia a little bit better, results in, you know, a decline in mobility so that now the resident when they, when they return, are unable to walk to the dining room like they used to, you know, self sufficiently is that trade off worth that little extra potential time of living and, and for some people it is and for others, you know, I’d rather be able to walk and I’ll, you know, treat me as best you can. And if it works that that feeling that I can do things myself is worth that, that risk.
And so families, I think, need to sort out in a more concrete way. And, and that’s where the discussions are guided, you know, as best as I can because, I mean, we cannot foretell the future. We have a good idea, but we can’t foretell the future. And so having, you know, guiding the families through that journey, and it’s difficult in long-term care because oftentimes when they move in with us, it’s the first time that any team has described the, the level of frailty to them. And so here we are. We’re a strange team, a strange location. And we’re giving them news that, in my opinion, should have been given much sooner. As to, you know, the state of the nation, if you will, the state of being. And, and it does take some time to, to build the trust, and to sort of understand where things are at. But I think in the long run, if we’re able to bridge that gap so that families to have that gift of time, that for me is, worth more than somebody recovering from a disease of some sort.
Kath Murray 16:52:16 So in normalizing, dying and death, we normalize decline. And what that might look like. And one of the things that I think you’re really good at normalizing is that whole decrease in desire to eat, decrease in appetite and increase in involuntary weight loss. Can you talk about that and how you teach about that?
Ben Robert 17:17:03 Absolutely. It’s something that I noticed over time. It’s called cachexia. And we, C A C H E X I A, 22 points if you play Scrabble.
Kath Murray 17:31:16 Now I didn’t know that. So I think we just to have to stop this right now. So Cachexia is worth 22 points if you play Scrabble. Now, that is an important piece. Good on you.
Ben Robert 17:49:11 And so, yeah, cachexia is part of the dying process. And it manifests itself in two major approaches. One is, you know, I imagine being invited to a big New Year’s Eve, or Thanksgiving dinner. I’ve had too much to eat because the food is fantastic, the ambiance is great. But now the host insists that I have another serving. And so now, when I’m eating that little extra, it doesn’t taste as good anymore. It doesn’t go down well. And I feel worse having eaten that little extra. And so when people have cachexia, they’re going to start feeling that that same sensation earlier in the meal. And over time it might be after just a few bites.
The second component of cachexia is one where people have a preference for diet texture. So if I’m not feeling well and I go down to the dining room table and there’s chicken or steak, I might just push it a bit to the side. If there’s shepherd’s pie, I might poke around a bit with the ground beef, or maybe just mashed potatoes and if I’m really not hungry, then just maybe the butterscotch pudding or the soup broth. And so for me, that preference between a regular diet, minced, pureed, thickened fluids, and then finally fluids is the second component of cachexia, and the two are independent. You know, one was you get the other one before the other and so on.
And it’s important to recognize that, you know, we see this in all dying processes and in the context of cancer, when people have to cachexia, typically they have months to live. It’s a very late process, that late sort of symptom that we see. But in non-cancer conditions. So, you know, cardiac conditions, lung conditions, any kind of abdominal condition, dementia and so on, that can start very, very early on and it can last for months and months and months for a long, long, long time. And so it’s not a predictor of dying, but it is part of the dying process.
And I think it’s critical for families to understand that because oftentimes it’s mixed up with starvation. And cachexia is not starvation. With starvation, the body is trying to survive. So people suffer because they’re not eating. But with cachexia Yeah, it’s part of the dying process. So people are suffering because the body can’t cope with those extra, that extra food coming in. And that’s what causing that suffering. It’s inevitable.
And so oftentimes by allowing families to sort of appreciate this, it does make a lot of that anxiety at the end. How come mom’s not eating? How come dad’s not drinking? These are the reasons, because it’s part of the dying process. And it’s not. There’s no suffering because the body is not trying to survive.
Kath Murray 20:41:08 So instead of, our job is to feed them, in fact, our job is to nourish. And how do we nourish or nurture? And sometimes we nurture with just a sip of water. And sometimes we nurture with a massage, and sometimes we nurture with sitting with someone and holding their hand and sometimes we nurture with giving them broccoli.
Ben Robert 21:07:02 You know, the person in the long-term care home, what’s important for them is being able to walk to the dining room or being able to sleep in or maybe be able to stay up late. And, you know, if they’re asleep to not wake them up, to give them a sleeping pill. Because that’s what it says, you know, give the sleeping pill, and so on. So I think that if people coming in looking at the type of care we give could focus on this palliative approach, what’s important for one person may not be important for their neighbour. And so if we personalize care, and we personalize the measures that we’re using, I think we get, closer to providing quality, quality care.
So how the staff speak to each other, how staff speak with, residents under their care, and sort of look at does it look like people are enjoying what they’re doing? Are they spending time with the residents are they spending time with each other?
And I think I very firmly believe in autonomy. For me, being sort of in charge of my destiny is very important. And I think it’s very important for people who I’m sort of guiding their health journey with, I think it’s important for them to sort of, guide let me know what it is they want. So that autonomy, I think is, is very important. So the ability to live my last days in risk if I, I think for me is very important. So if I enjoy walking alone, without a walker, and I’m at high risk of falls, I’d rather have look for a place where people would let me fall so that I can enjoy my walking.
Kath Murray 22:57:10 Lovely, lovely. And when I think about the principles, the beautiful principles that direct, that inspire great geriatric care, and I think about how those principles mesh so beautifully with how do we integrate, a palliative approach to care and, and how fortunate we are to come to be at a time here we can take those two specialties and mesh them together and pull the best out of both. And I hear you say that for you, one of those principles that is just a real guiding light is autonomy. So we will remember that, you know, we spoke with Doctor Daphna Grossman, and for her, I have a feeling it will have something to do with who has the dark chocolate on the on the shelf. For you? We know it has to do with autonomy.
Ben Robert 23:53:12 Well, that also, you know, in that context, if I had a choice between, you know, a very healthy vegetable dish or the dark chocolate, autonomy says, I’m getting my dark chocolate as well.
Kath Murray 24:07:07 So I have a feeling there’s a few of us who are going to be changing the menus. Ben, thank you so much. Now, this podcast, as you know, and I’ll just summarize with closing is part of the Hospice Palliative Care Ontario’s education programming. And we invite anyone who’s listening to go to HPCO.ca for other education offerings and come and join us again for our podcast series, Palliative Talks.
Thank you so much.
Ben Robert 24:43:02 Thank you. It was a pleasure.
