As rising fourth-year medical students, we talked about caring for dying patients with Dr. Angie Anderson (AA), a pediatric palliative care specialist. An abridged version of our conversation is transcribed below.
Lindsey Pileika (LP): Honored to speak with you, Dr. Anderson. I just wanted to preface our interview with experiences that I’m bringing to this conversation. During my third year, I was working on the pediatric hematology-oncology service, where we frequently spoke with kids and their families about end-of-life care. Soon after, I lost my grandmother. So, I’ve experienced loss now from the perspective of a family member and a medical trainee.
Our first question to you is this: From a provider’s perspective, how can you be there for patients and their loved ones at the end of life?
AA: I’m so sorry to hear that about your grandma — thank you for sharing that.
I’ll start by saying that we kind of have this image that dying has to be this grim and scary thing. We have this feeling that people are afraid of death.
The reality is that people just don’t know about it.
Frequently, when something is unknown, we’re afraid that it will be something terrible. But for providers, that conversation is an opportunity to expand people’s perspectives: If you’re talking about death and dying with patients and their families, maybe what lies beyond is something beautiful.
LP: And when patients are dying, what do your conversations with patients and families look like?
AA: At least for my patients and their families, if you walk in the room at any point, sometimes people are crying; other times, we’re cracking jokes about something they did; or maybe we’re talking about something that was neat or special about them.
You’re meeting people frequently at maybe the worst, scariest or most emotional time of their lives.
All you’re trying to do is walk that road with them so that they don’t feel so alone or scared. The hope is that their loved one’s passing is peaceful, loving and a time to share, remember and be grateful.
I like to bring those things up. I do pediatrics, so I ask:
What did your little person – your little son or daughter – what did they teach you?
How have they changed your life?
That time is an opportunity to honor them and thank them for however they touched your life.
Tino Delamerced (TD): It must be difficult for families to broach that topic of death and dying, especially with kids. But the kids must be thinking about it, too. How important is it to bridge that conversation between kids and their families?
AA: All the kids are scared, but their #1 or #2 worry is that their parents, brothers, or sisters will not be OK. A close second to that is: Is it going to be uncomfortable or painful? I hear more of those questions than, “What happens after death?”
One kid asked me point blank, “What’s it like to die?”
I told him, “Great question. What do you think?”
He answered, “There’s nothing.”
“Maybe you’re right. But it seems like we all came from something, so it seems like we all should go to something. What do you hope it’s like?”
He said, “Peaceful. No more pain. I’ll be able to walk.” He was in a wheelchair. Then, suddenly, he got this enormous smile on his face. “And I can eat whatever I want.” We had him on a low-sodium diet, so he was missing his pickles. But you could see his demeanor change.
You could see him move into a realm of possibilities instead of emptiness. This is not to say that kids don’t worry about what dying is. But part of what can happen is that families don’t want to talk about dying because, understandably, they’re afraid to upset the child.
At the same time, every time the child brings it up, the family starts crying, so the kid feels that they are making their parents sad. So, sometimes what happens is no one is talking.
Part of what we try to do, then, is to help families come to a place where they can be more open and say what they want or need to say. It doesn’t mean those more open conversations aren’t difficult. But they do allow both sides to express their feelings.
TD: You have this beautiful perspective that the great beyond is a realm of possibilities rather than emptiness. It moves me because I feel that humanity has a tendency to dream and imagine and think about what lies beyond. I’ve worked on teams that have lost a patient. But only once did my team have a conversation about that loss. Dr. Anderson, you work in an academic hospital with students, residents, and fellows. How do you talk about patient loss with trainees?
AA: On the pediatric hematology-oncology service, we have a day or afternoon — for us, it’s 12:00 p.m. on a Thursday — dedicated to the kid we’ve lost.
During that time, we sit, reminisce, and remind ourselves that they touched our lives. It helps us share stories, hold onto precious moments, and remember why we do what we do. It gives us a moment to be grateful, and it’s a time for us to heal – an opportunity to help with burnout. I hope in my heart that I never have a kid who is just another kid. If I get to that point, I think it will be time for me to move on.
TD: During my internal medicine rotation, I was rounding on a patient who wanted to be taken off dialysis because they did not like how it was impacting their life.
As you know, when people are taken off dialysis without a kidney transplant, they typically only have days to weeks left. Appropriately, she was transferred to hospice services, and my team asked me to work with a different patient. As the hospice team took over, I stopped visiting her room. I stopped saying hello. I felt emotionally overwhelmed by it all. Now, I feel very differently, and I deeply regret not being there for her in what probably were her final moments.
AA: The great thing about you is that you had regret. That by itself is special, and you will honor that patient by changing what you do going forward. I can tell you that I have done it. I was a third-year medical student, like you. I did phlebotomy on the side, and I had met this woman who had breast cancer. I’d draw blood from her; we’d chitchat; and I’d leave.
One day, I could tell she was sad. I sat there for a moment holding her hand, and I just had this overwhelming thought that this was a huge moment, bigger than myself. No book or teacher had taught me what to do in that moment, so I pulled my hand away and left.
That was more than 30 years ago, and I still remember it. I swore that I would never do it again, no matter how difficult, and no matter how much I didn’t know what I was doing. I think one of the greatest gifts you can give to someone who is dying is to sit there in the unknown with them. I thought I was scared about being in the unknown. Imagine what they’re sitting with.
You do not have to have an answer to life’s hardest questions. You just need the willingness, interest, and compassion to sit with someone in that uncomfortable, difficult, or scary moment. It makes a huge difference.
LP: Dr. Anderson, you have been so wonderful to speak with. Any parting words of wisdom?
AA: One last thing is to notice when you get tired or need a break. If you’re working on empty, you’re only giving your patients part of yourself. Every person on the planet has to figure out when and how to fill up. Because that is when you do your best work.
Angie Anderson is a pediatric palliative care physician. Amador Delamerced and Lindsey Pileika are medical students.
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