Adam is a palliative care doctor who cares for children with life-limiting diseases and their families.
The first major experience that pushed me into palliative care was in third-year medicine. I was given a gentleman to see. He was in his mid-70s and in hospital with pneumonia. Every day after listening to his chest I would sit and talk with him. I really got to know him and his wife very well. He was from Armenia and talked to me a lot about the Armenian genocide. He had spent a lot of time in Israel and I had just returned from a trip there. We formed a really nice friendship.
Toward the end of the first week he wasn’t getting better. We did a CT scan. He had metastatic cancer and died a few weeks later.
I just felt it was right to go to his funeral. My senior resident said, “I worry it might look like you feel guilty about something. That maybe had things been different he wouldn’t have died.” My staff physician said, “You’re going to experience the death of a lot of patients. You can’t go to all their funerals. It’s not something we do.”
I was really upset by this but still decided to go. My team was on call that night. I told my senior resident that I had a family event I had to go to, and asked if I could go and be back around midnight.
I changed into my suit in the car and drove to the church. I remember wondering if this was a big mistake. Maybe I wouldn’t be welcomed. Maybe they would look at me as the person that killed their father.
But I got a hero’s welcome. The family introduced me to all of their relatives and friends. They made me sit in the front row between the mother and the children.
That experience made me realize that we’re not usually looked at as failures when our patients die. Our patients and families just want to know that we’re doing our best. I think the message they took from my presence was that I cared.
I always start my consults the same way. I say, “Tell me about your child.” About three-quarters of families start telling me about the medical condition, because that’s how we have trained them to approach things. I usually listen respectfully for a bit, and then let them know that I really want to hear about who their child was as a person before they got sick. That isn’t a question that parents are used to hearing at a hospital. But I have the luxury to give them all the time they need, and these families love talking about their kids. Sometimes it’s very hard. The tears start flowing because in so doing they recognize how much things have changed.
I don’t feel that it’s my role to push what I think is a good quality of life. Where a family sees a good quality of life, where there is still happiness and joy, then I’m okay with that. When I say, “Tell me about your child,” and they’re hard-pressed to share anything positive that’s going on, I will reflect on that with them. Those are the families that are usually open to changing the direction of care.
I always start my consults the same way. I say, “Tell me about your child.” That isn’t a question that parents are used to hearing at a hospital.
I’ve come to learn over the years that there is no one right way to do death. I think we have a vision in the medical world about what a good death looks like. It happens outside of the ICU and hospital. Usually in the home. It is absolutely painless with the people you love surrounding you. I’ve come to learn that although many parents want the same thing for their children, many do not. For many parents, being a good parent means doing all that they can up until the very last breath. And for them, that means being in the hospital.
For some of our families, it is extremely important that death occurs in the intensive care setting. This creates a tension sometimes because it’s obviously not the best use of resources. But they’re not strangers to that unit. They have come to know it very well. Their children have gone through the unit multiple times. It’s where they want their child to die. Trying to convince them that they want to be at home, even if we arrange all the supports, is just not right. It’s not where they want to be.
When you tell people you’ve never met before what you do, what reaction do you get?
It’s a bit of a downer at a party because everybody immediately goes to a very dark place. About how depressing that must be. I get it. Nobody wants to talk about children who are dying, including myself. Usually I tell people I am a paediatrician, which I am very proud to be. Some will dig deeper, and there’s always this look of “wow.” I tell them, “Yes, there are very sad moments. Yes, I have patients who are dying. There are a lot of tears in the job. But there are a lot of happy moments as well.”
Only about half of my patients are dying. The rest are living with life-limiting illness and a lot of what we do is improve quality of life and reduce symptoms that are creating suffering. As an example, we see all children that are being assessed for a heart transplant. Almost all of them are symptomatic and we can improve things. But sadly, only a third of those patients are going to have what you and I would consider a really good outcome. They spend a lot of time in hospital. Some of them spend months there on ventricular assist devices trying to maintain their heart function until that organ becomes available.
One child really just wanted to go out with his whole family to his favourite restaurant in downtown Toronto. We got a special reservation and picked the whole family up in a stretch limousine. He had never been in one before.
We’re the team that comes around and tries to make things a little bit better while they are there. For a young teenage girl who is waiting for a heart, we will arrange a mani/pedi. We empower them for a moment and say, “This is your space, what would you like to do?” When I tell people that’s part of what I do, they are often very surprised.
The parents also feel like there’s a weight off their shoulders by reminding them that while we’re doing everything we can to treat the medical problems—to cure the disease, perhaps to get the transplant—that we don’t stop focusing on living, and finding ways to do that in the hospital.
For some of our families, it is extremely important that death occurs in the intensive care setting. Trying to convince them that they want to be at home, even if we arrange all the supports, is just not right. It’s not where they want to be.
We have a wonderful charity—Care for Kids Toronto—that’s worked with our team for decades, and their main focus for donating dollars is to do things that improve quality of life for children with a life-limiting illness. I remember one child who was in his last weeks of life, who really just wanted to go out with his whole family to his favourite restaurant in downtown Toronto. We got a special reservation in a private room and picked the whole family up in a stretch limousine. He had never been in one before.
Another child was in hospital for many weeks. There were a lot of people that were concerned that this might be his final admission. The family was finding things very difficult. I met with them and asked, “Given the situation, what is most important to you and what are you hoping for?” The mother said, “It’s going to sound stupid, but if we weren’t here, my son is turning 13 next month and we would be celebrating his Bar Mitzvah.” And I said, “Why don’t we plan a Bar Mitzvah?”
And we did. One of the things in a Bar Mitzvah is a dance called a hora, where people dance around in a circle and the Bar Mitzvah boy or girl is put up in a chair and hoisted up. They did this with this young man in his wheelchair.
There were a lot of tears. But they were tears of joy in the parents’ eyes. There was just so much excitement and it was such a special moment for them. Thankfully he is still alive. Had that been that child’s final admission, I think that would have always been something that they held onto as a memory. For a few hours, in their minds, they were transported out of the hospital with all of their friends, and just feeling great about that.
I think that there’s an unwritten, hidden curriculum in medical school that says that students and residents have to keep a bit of a distance from patients. If you get too involved you run the risk of getting hurt. But I think I practise at my best when I fully immerse myself. I approach every patient and family as though it was my own child and ask, “If I were in this situation as a parent, what would I want?”
I don’t want these families to come away from our interactions thinking, “He doesn’t really understand.” Of course I don’t really understand! I hope I never really understand! But I do my very best to try to appreciate what it must be like.
I see my role as taking a very difficult situation and trying to make it a little bit better. Helping people focus less on the medical things, and bringing moments and experiences of happiness and joy. That really fills my cup. It recharges my batteries and lets me do it over and over.