On June 17, 2022, I arrived for Pediatric Grand Rounds at Washington University School of Medicine as part of a lectureship sponsored by the June Jessee Memorial Foundation. Dr. Bob Macauley was the lecturer, and his presentation had been two years in the making since we had to reschedule in 2020 due to Covid. When we established this program, the goal was to advance patient care by educating doctors, particularly new and young doctors, on the unique needs of children with complex neurologic conditions and the benefits of palliative care for this patient population. So much went wrong on our journey with June that could have been handled better, mainly the late timing of when we learned about palliative care and how it could support our family along June’s health journey.
On a personal note, this lectureship is very special to me. Not just the idea that it is helping the future of medicine by impacting doctors as they head out on their professional journey, but it is special to me because my sweet June is helping to teach them. As a grieving mother, that is an incredible experience to witness. June had a severe neurological impairment and developmental disabilities. If she were alive now, she wouldn’t be a typical 5th grader. I never will see her perform in a school play or graduate from high school. I will never hear her name called as she gets her diploma. This was the next best thing. Hearing her name and seeing her picture on the screen at one of the nation’s top medical schools will always be a memorable experience for me. June lived, loved, and was loved; her life had meaning and continues to impact the world positively. I do take comfort in that.
During Dr. Macauley’s talk titled, “The Not-Top-10 list of Caring for Children with Severe Neurological Impairment,” he presented a list of 10 things physicians should, at the very least, avoid when caring for a patient with a severe neurological disorder. His title, a spin-off of SportsCenters Not Top 10 list of sports highlights, outlines his compilation of things doctors do that really negatively impact patient care.
He started off by defining Severe Neurological Impairment (SNI) and why this patient population is important to understand. “Children with Severe Neurologic Impairment account for only about 1% of all kids but they represent about 14% of all inpatient stays at children’s hospitals and about 50% of all PICU admissions,” Dr. Macauley explained. “So, small number, but we see them a lot and it means we have to take good care of them.”
Throughout the remainder of the hour, Dr. Macauley went through his list of the top things physicians should never do. With his permission, I’ve included his list below with a brief summary of each one.
Dr. Bob Macauley’s Not-Top-10 List
- (Gu)estimating quality of life – Generally speaking, healthcare professionals underestimate quality of life for children with severe neurological impairment as compared to parents’ input on their child’s quality of life.
- Availability bias – Doctors only see the patients at the hospital and at their worst. They don’t get to see the kids at home when they are happy and smiling.
- Waiting to involve palliative care – He talked about the right time to involve palliative care and referred to “the surprise question.” Would you be surprised if your patient died within the next year? If the answer is no, it might raise a physician’s level of concern. He then defined palliative care and how it can support patients with SNI and their families.
- Talking about what a patient needs, without first identifying what the goals are – Take time to understand a family’s hopes and goals that can help graph a treatment plan.
- Yes-butting – When doctors do this, everything said before “but” is forgotten, and it torpedoes trust. He talked about how we can learn lessons from improv by instead saying “yes and.”
- Not asking the “usual” questions – Children with SNI are still kids! Ask the parents about their likes and dislikes and what makes them smile. Even better, ask the kids themselves.
- Focusing on best interests rather than good parents – Amazing parents come in all shapes and sizes. Some amazing parents choose various medical interventions. Others focus on quality of life and comfort. Ask, “What kind of amazing parent are you?”
- Starting a sentence with “Well, I would never…” – This line was referenced when physicians speak to one another or even think to themselves. The truth is, no one knows what they would do in this situation unless they are actually in it.
- Sticking with “standard” indications/dosing range – To keep a child with SNI comfortable, doctors frequently have to go outside the standard dosing range.
- Thinking this is rocket science – While not downplaying the amount of training that goes into the field, palliative care is about “good doctoring.” All physicians should practice palliative care to some degree, especially when identifying hopes and goals, fears and worries, breaking bad news, and communicating with parents.
Dr. Macauley’s remarks were spot on, and, as a parent, it was validating to listen to him speak to other medical professionals and be a voice for our families. He was an engaging speaker. I laughed, and I cried. I nodded a lot and had to refrain from saying “yes!” in agreement many times. He was personable, and I could see why he is an expert in the field.
Following his talk, I had the opportunity to meet with Dr. Macauley about JJMF and our plans to find respite solutions for families. When I shared why respite is so important to me, I mentioned how listening to him talk was so powerful and solidified what I already knew about how much more we can do for these families. I knew that wasn’t the point of his talk, but that’s what I got from it. “These families are going through so much,” I said. “We went through so much, and it felt like everything fell completely on our shoulders.” I started to cry as I told him how tired I had been. I just wanted it all to end. I wanted it to stop. I wanted life to look a bit more normal, and maybe that was why I didn’t fight harder at the end of June’s life. Maybe if more respite options were available, June would have been here a little longer? Maybe I wouldn’t have felt relieved when she died?
What I loved most about that interaction was that he just listened – empathetically. He didn’t tell me no, that wasn’t the case or that even with respite, June would have still died young, which is all true. He didn’t hand me the box of tissues in his reach. He didn’t try to stop me from crying. He just looked at me with understanding and affirmed that it was too much.
I left feeling thankful that parents like me have a doctor like him and that future doctors had this opportunity to hear him and meet with him. It takes a special person to go into pediatric palliative care; the ones I have met have been smart, compassionate, and kind. Yet, they also hold a sadness in their eyes that comes from bearing witness to innocent suffering. And as a parent of a child with severe neurological impairment, finding a physician that will sit in the sadness with you is critical to acceptance and healing.
My determination to find respite solutions for families in the St. Louis region is a lofty goal, but after hearing Dr. Macauley’s lecture, I feel even more compelled than ever to tackle it. It may take us years to complete, but we will find a way to help families. It is all too much, and this is hard. And as Dr. Macauley said, it’s a small number of kids, but we need to take good care of them. And one of the best ways we can take care of kids with severe neurological impairment is by ensuring their parents are supported.
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