February is birthday month in our home. Twenty-five years ago this week, our eldest child was born, which means that it was 25 years ago that I entered the world of primary care pediatrics. Twenty-one years ago the following week, our third and youngest child was born, which means that my children (and thus I) have now, these 21 years later, truly aged out of pediatrics. We were part of the same practice for 25 years; and I will likely never visit that practice again.
The reality of this has hit me surprisingly hard. Certainly, it makes me feel old. It also makes me feel sad because I really loved the doctors, NPs, and front office people in the practice. And never more so than when our second, middle child, Cameron, was diagnosed at age six months with a fatal condition and we began an excruciating journey with her that lasted until her death at age two years, but of course continued for years after as my husband Charlie and I and her siblings lived in the shadow of her life and our grief.
From diagnosis onwards, Cameron’s primary care pediatrician was our rock. Dr. Rick Goldstein (featured here on CPN) delivered the diagnosis (“I’m sorry,” were his first words.). He told us what to expect, over time spooling out the likely inflection points and decisions we would face. He found us a neurologist for Cameron and a pediatric psychologist to help us talk to our older daughter about what was happening. He asked us what we cared most about for Cameron’s life and listened when we told him we wanted NOT to give Cameron a feeding tube and we wanted to avoid the hospital and treat her pneumonias at home (this required preparing his colleagues in his practice so they could also support us when he was not on call.). He treated every one of Cameron’s medical issues except seizures. He did advance care planning with my husband, including signing medical orders. (I found I could not be involved in this piece.) He made it possible for Cameron to die peacefully at home, which involved listening to our certainty that this last pneuomina was her final pneumonia that we would not try to treat but instead move to end of life care only. He came to her service. He stayed close in the years that followed and always spoke of Cameron when I brought the other children in for their visits. He honored her as he cared for her sisters.
This is one of a small handful of things that made ALL the difference in how we felt about the life that Cameron lived. So much so that several years after her death, with the encouragement of a burgeoning pediatric palliative care field, Dr. Goldstein and Charlie and I partnered with the American Academy of Pediatrics to produce Cameron’s Arc, an educational film and guide to be used in training pediatric residents and primary care pediatricians in how to truly accompany a family from diagnosis through their child’s end of life. Cameron’s Arc won an award. It is still being used. It was one of the first non-clinical resources produced to advance palliative care in primary pediatric care.
So, you can see why I am most passionate about palliative care in primary pediatrics. I know what a central role the pediatrician plays in a young family’s life and I know what a difference they make if they stay really close when the wheels come off. I’ve heard of a pediatrician who said, “Children in my practice don’t die, so I don’t need to know about palliative care.” What? Some children are born with or develop devastating conditions. It is a sad truth. What if this pediatrician were that child’s doctor? If the pediatrician backs away rather than leaning into the noble challenge of caring for the whole child – which I’m pretty sure is the unwritten charge of primary care pediatrics – the family feels abandoned. I know of too many stories like this, where the doctor essentially left the room and didn’t come back.
I also believe that pediatricians WANT to stay with their patients and families. I don’t think they want to leave the room. Leaving the room feels lousy. But I suspect they feel untrained, uncertain, unconfident in how to do this sacred work.
My professional crusade is to promote palliative care for all children diagnosed with serious, life-threatening conditions. My personal crusade is to promote palliative care in primary care so that this bond between the primary pediatrician and the family can be one that strengthens the parents, gratifies the doctor, and maximizes wellbeing for the child and siblings. It is in that spirit that I have joined Dr. Pat O’Malley multiple times to present on Advance Care Planning to primary care pediatricians at Massachusetts General Hospital for Children’s annual Pediatrics conference. (See a recording of this presentation here.) Courageous Parents Network also recently collaborated with the AAP on another project: Talking about Serious Illness is a practice quality improvement (EQIPP) course offered by the AAP for any member pediatrician to foster or buttress their skills in initiating and having discussions that facilitate open, honest, and compassionate care for seriously ill children and their families in their practice setting. It’s not nearly as popular as the QI courses on asthma, or antibiotics, or ADHD, for example. I get that. But even as the population need is much much smaller, the topic is just as important. Rare as instances of serious pediatric illness may be, what could be more important than the enterprise, shared by parents and their pediatricians, of giving our sickest children the best lives possible for as long as possible?
If you are a pediatrician reading this and wondering, “Can I do this?” I say, “Yes, there are resources to help build your communication skills and confidence. You can help the family know what to expect. You can help find them the specialists. You can advocate for the child and family with your colleagues, when necessary. You can stay ever present and available.” I would finish with, “And when you do these things, you will be remembered and appreciated ever after for the difference you make in this family’s life.”
P.S. Please join us live by Zoom on 2/17/2022 at 2pm ET, 11am PT for a conversation with several parents and their child’s primary care pediatrician: The Primary Care Pediatrician: Quarterback of Your Child’s Care Team?