S12: Episode 135: Kira Goodman and Dave Lysecki

I was just going to say, we talk so much about adult palliative care on the podcast, and it would be interesting to just try to talk about what are some of the things about pediatric palliative care that's really different and what's often misunderstood about pediatric palliative care?

I think one of the things that's misunderstood about pediatric palliative care and much like our adult colleagues, we have a love-hate relationship with the name palliative care.

And there's an extra layer to that.

And we all speak about the role of palliative care early in disease course and its independence purely from end-of-life care.

and yet the pressures on the system are such that so many adult palliative care institutions programs have criteria like you need a dnr to access it or you need to be this close to end of life and it's not a fault of any individual these are resource constraint issues um but but it it then further complicates things in pediatrics when people associate palliative care with end-of-life care because One of the major distinguishing factors is the duration with which um, patients, children, uh, often are enrolled in, in pediatric palliative care programs.

Uh, there, there are many conditions that, that lead to serious illnesses that lead a child to, to have, have, uh, threats to their life and to their quality of life.

Um, but children are also growing and developing and typically come with healthy other organs.

And, and so that those, um, their capacity to sustain themselves with a healthy heart and healthy kidneys is much longer.

And the willingness of families and communities to wrap around them and provide medical technology and medical support to extend a life that didn't have another opportunity, right? It isn't a story of, of leading one life and then having a new chapter of change, but really this being the only chapter.

And so there is a higher rate of really advanced medical technology used to prolong the life that they have.

And so as a result, pediatric palliative care is often a relationship that spans years, often starting at birth, sometimes before birth with our perinatal consults and across years of generally complex symptom management, particularly because of the rarity of a lot of these conditions.

And, and the extra dynamics of that that developmental psychological mindset of the patient, but as well the siblings and and what the impact is on parents grandparents and a whole community when when a child is sick.

It's a bit of a long winded answer I'll see what Kira wants to add but those are the first things to jump to my mind.

Yeah, I think I think I can answer this in a different way, because when I learned about palliative care, it was so I had watched my my grandmother die in hospital in a palliative care unit at Baycrest.

And so I kind of watched a little bit of that unfold.

And I thought, oh, that was kind of that was kind of interesting.

And so when I was still an undergrad, before I became a nurse, I started volunteering to at the Carpenter hospice, which is in Burlington, Ontario.

And I saw what adult palliative care looked like and, um, got to be a part of some of the ends end of life there.

And so when I had the chance to become the clinical manager at Emily's house, I walked into the children's hospice and I looked around and I literally like whispered to them.

I said, where are the Where are the dying children? Because the vision I think that we have for those of us who haven't really taken part in children's palliative care before are really only the perceptions we have of adult palliative care, which, as we all know, really focuses in on end of life.

And so that's this conception that I think a lot of us have of palliative care.

And as Dave mentioned, for children, it is so much more profound the length of time that a lot of families come to partake in this sort of care.

And so it was full of children that were accessing medical respite as part of their pediatric palliative care journeys.

And that's when I really started to have my eyes open to one of the main differences, which is this critical importance of pediatric respite.

And so meeting all these kiddos who had these complex medical conditions, I realized that we all have to open our mind up.

I was just going to say, we talk so much about adult palliative care on the podcast, and it would be interesting to just try to talk about what are some of the things about pediatric palliative care that's really different and what's often misunderstood about pediatric palliative care?

I think one of the things that's misunderstood about pediatric palliative care and much like our adult colleagues, we have a love-hate relationship with the name palliative care.

And there's an extra layer to that.

And we all speak about the role of palliative care early in disease course and its independence purely from end-of-life care.

and yet the pressures on the system are such that so many adult palliative care institutions programs have criteria like you need a dnr to access it or you need to be this close to end of life and it's not a fault of any individual these are resource constraint issues um but but it it then further complicates things in pediatrics when people associate palliative care with end-of-life care because One of the major distinguishing factors is the duration with which um, patients, children, uh, often are enrolled in, in pediatric palliative care programs.

Uh, there, there are many conditions that, that lead to serious illnesses that lead a child to, to have, have, uh, threats to their life and to their quality of life.

Um, but children are also growing and developing and typically come with healthy other organs.

And, and so that those, um, their capacity to sustain themselves with a healthy heart and healthy kidneys is much longer.

And the willingness of families and communities to wrap around them and provide medical technology and medical support to extend a life that didn't have another opportunity, right? It isn't a story of, of leading one life and then having a new chapter of change, but really this being the only chapter.

And so there is a higher rate of really advanced medical technology used to prolong the life that they have.

And so as a result, pediatric palliative care is often a relationship that spans years, often starting at birth, sometimes before birth with our perinatal consults and across years of generally complex symptom management, particularly because of the rarity of a lot of these conditions.

And, and the extra dynamics of that that developmental psychological mindset of the patient, but as well the siblings and and what the impact is on parents grandparents and a whole community when when a child is sick.

It's a bit of a long winded answer I'll see what Kira wants to add but those are the first things to jump to my mind.

Yeah, I think I think I can answer this in a different way, because when I learned about palliative care, it was so I had watched my my grandmother die in hospital in a palliative care unit at Baycrest.

And so I kind of watched a little bit of that unfold.

And I thought, oh, that was kind of that was kind of interesting.

And so when I was still an undergrad, before I became a nurse, I started volunteering to at the Carpenter hospice, which is in Burlington, Ontario.

And I saw what adult palliative care looked like and, um, got to be a part of some of the ends end of life there.

And so when I had the chance to become the clinical manager at Emily's house, I walked into the children's hospice and I looked around and I literally like whispered to them.

I said, where are the Where are the dying children? Because the vision I think that we have for those of us who haven't really taken part in children's palliative care before are really only the perceptions we have of adult palliative care, which, as we all know, really focuses in on end of life.

And so that's this conception that I think a lot of us have of palliative care.

And as Dave mentioned, for children, it is so much more profound the length of time that a lot of families come to partake in this sort of care.

And so it was full of children that were accessing medical respite as part of their pediatric palliative care journeys.

And that's when I really started to have my eyes open to one of the main differences, which is this critical importance of pediatric respite.

And so meeting all these kiddos who had these complex medical conditions, I realized that we all have to open our mind up.