What does a pediatric palliative care physician do all day?

7 a.m. I’m not a morning person, so I really have to drag myself out of bed to start my day. The first thing I do is let out our two Samoyed dogs (both puppies) and feed them. They get their morning exercise in the yard behind our house in the Ritchie neighbourhood of Edmonton, a five-minute drive from downtown and close to the two hospitals where I work the most: Stollery Children’s and Glenrose Rehabilitation. (Don’t worry—I don’t leave them out there all day! My wife brings them in at 8:30 a.m.) Then I make coffee—I always have to have coffee—but never breakfast, as typically I’m already running late by this point! Read: A life in the day: Dr. Erin Luxenberg 8 a.m. Some of my workdays start with a handover of pediatric palliative care cases at Stollery Children’s. Since the start of COVID, often handover can be done virtually from home over Zoom, but sometimes when I’m on call I would still need to do them from the hospital. Our entire team tries to join for each handover so that we are all up-to-speed on what’s happening for everyone, and also to take advantage of each colleague’s varied expertise on managing different complex situations. We usually have about 80 patients from across Northern Alberta in our care, including on average about ten to 15 in-patients. Some of our patients are from other parts of Western Canada, as our hospital is the transplant centre for four western provinces and two territories. They range in age from pre-natal to 21, because we continue to see some patients into adulthood who learn of their life-threatening illnesses before age 18. Our program, which falls under a division with the acronym IHOPE (Immunology, Hematology, Oncology, Palliative care, and Environmental medicine), helps to optimize quality of life for seriously ill children and their family members. A major goal is to have good symptom control so that both the children and their families can focus on things that help them feel as well as possible both physically and emotionally. The focus is on living life to the fullest even in the face of a serious illness. I’m part of a unique and dynamic team that works closely with our young patients’ usual healthcare teams and sees them and their families in settings of their choice, whether in the hospital or in a clinic or in their own homes. Our team—which includes two oncologists, a general pediatrician, an anesthesiologist, and me, a family doctor with extra training— is mobile. We are not based in any particular unit of the hospital—we work across departments, from the ICU to oncology and surgery. 9 a.m. I usually do in-patient rounds. Sometimes that can take all day. Other times I may drive as far as Red Deer to do home visits. About half of my patients die at home with their families. We often get to know our patients over multiple years as we help to relieve suffering and symptoms such as pain. Over time, we can form a trusting relationship very important to providing care to them as they approach the end of their lives. In this field of medicine, the topic of assisted death gets raised every so often. Palliative care is not assisted death, which continues to be illegal in the pediatric population (though that could change one day under the “mature minor” concept—one of many interesting and controversial ethical questions in this field). Caring for people under age 18 with life-limiting illnesses or conditions like major organ failure or cancer or trauma—anything anyone can die from—accounts for about 40% of my practice. I first learned about pediatric palliative care by happenstance 20 years ago when, at age 16, a friend convinced me to join her in applying as volunteers at a children’s hospice in Vancouver, where I grew up. I was horrified by the idea at first—I just didn’t think I had the emotional mettle. I went along anyway to support her—and I ended up being selected, not her! But from Day One, I fell in love with being around the kids there. Kids who are dying just want to be kids. They want to be comfortable so that they can play. My job was to help make their remaining moments as bright and as meaningful as possible. That experience really turned on a light for me. Before then I didn’t know what I wanted to do with my life. I was a nerd with lots of “academic” interests, like geography, architecture, languages and math. But after that, my goal was to become a doctor and to work with dying kids. After doing a sciences degree at Simon Fraser, I went to the University of Alberta here in Edmonton for med school. I liked every area of medicine—and I’ve ended up doing several of them! After graduating in 2012, I did a two-year residency in rural family medicine. I matched to Memorial University through CaRMS, which at the time had a mobile program, allowing me to spend most of my time in out-port communities in Newfoundland, and some of my time in various parts of Baffin Island, in Nunavut. It was a fantastic personal and professional experience filled with great adventures and people. I loved it—and I still do, since about 20% of my professional life is now devoted to being a family doctor in remote fly-in communities such as those in the Northwest Territories. The remaining 40% of my practice is spent working with both children and adults who have challenges from developmental disabilities, which may include physical, mental, or behavioural issues stemming from autism, ADHD, fetal alcohol spectrum disorder, intellectual disability, cerebral palsy, childhood trauma, genetic and metabolic conditions, amongst others. After my family medicine residency, I spent another four years doing additional training so that I could have the scope of medical practice I have now. This includes fellowships at Queen’s, UBC, and the University of Ottawa, where I learned more about developmental disabilities for people of all ages, pediatric pain, and palliative care. There is tremendous need in both rural and urban settings for this type of care for people with disabilities. I work with patients referred to me at the Glenrose Rehabilitation Hospital, a unique healthcare facility in Alberta that is devoted primarily to high-level rehabilitative care of both adults (including the elderly) and children. There is a lot of overlap with palliative care. A lot of kids with neurodegenerative illnesses or cerebral palsy have pain and other symptoms—though the challenge is finding out where, when, and how, because they may not be able to communicate verbally. Many kids also suffer from post-op pain or chronic pain. Whatever type of pain they have—I’m happy to help. Many kids have already been tried on multiple different treatments by their family doctors and pediatricians before they get referred to me. Chronic pain is very prevalent in society—affecting an estimated 5% to 10% of kids—and wait times are long—up to two years here in Alberta. Roughly a quarter of all kids have some pain. But severe chronic pain that stops a kid from going to school or even walking is a serious medical issue that needs to be addressed. In most cases I can help out by making their pain tolerable and manageable enough for them to enjoy life. Management can and usually includes a mix of medications, physiotherapy and psychological tools like coping techniques to change their reactions to pain. In some cases, they may even need surgery and/or radiation, such as for tumours compressing the spine. My rehab and pain work—together with being a family doc—are all really rewarding areas of my practice. Helping a kid with symptoms so severe that they lie in bed all day, transform back into an active child able to participate in school and hobbies again—it feels fantastic. Pediatric palliative care is also very rewarding, but at the same time, is always heartbreaking. No parent should have to outlive their child. Noon I usually bring something for lunch like a plain croissant, a scone, or even a slice of bread, but I typically eat it while walking between wards because I’m usually too busy for a formal meal. 1 p.m. If I’m not still doing rounds, I may now leave to do home visits, or work my way through new referrals. Referrals may include assisting families who have learned of a deadly diagnosis for their child in the hospital, such as kids who have suffered severe brain damage or may be in the ICU on a ventilator. We generally get a few cases a week like that. Sometimes we have to drop everything and go attend immediately. Sometimes we will go a bit later, as it may not be helpful to talk to families while they are still reeling from hearing devastating news. It really depends on the situation. 5 p.m. I try to wrap up work at this hour, though with the unpredictability of palliative care, I might need to stay late! Regardless, I always look forward to heading home to my new bride, Evangeline. We met in 2020 and got married in June in her native South Africa—the 55th country I’ve visited over the years. I love a big supper, and when I was a bachelor, I used to make a massive meal on the weekend and eat the leftovers of it over the entire week. Fortunately for me, Evangeline is a fantastic cook who makes us amazing meals every night. 7 p.m. After supper I sometimes walk the dogs—or sometimes I pay a local teenager to do it. Mostly though, I do paperwork remaining from the workday, or I do work on online graduate-level writing and research courses I teach through McMaster University (a side gig I do to give back to a Masters program I completed in 2017). I also love teaching ultrasound, something that has saved me many times in potentially life-and-death situations in remote locations, where blood work and other diagnostic tools are often not available, by helping to decide whether a patient needs an emergency evacuation or not. I’m part of a group of national instructors who teach point-of-care ultrasound courses, both virtually and in-person around the country, so that users can feel competent and confident to incorporate ultrasound into their patient care. I’m also frequently on call for 1-to-2-week-long stints for palliative care, when I have a pager and have to be within a 30-minute drive of the hospital. Families and other physicians call the pager. I have to attend regardless of what time I am paged. You can’t schedule someone who is dying or is in a pain crisis. Sometimes we can work things out over the phone. Other times, it must be done in person—for example, maybe because a family is having second thoughts about an important decision like withdrawing a ventilator or not doing CPR. In my view, you just have to be there for an unstable patient and their family.—As told to Quebec City writer and longtime Medical Post correspondent Mark Cardwell

What does a pediatric palliative care physician do all day?

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