Treating a patient is a whole different animal than BEING the patient. The diagnosis is suddenly a whole lot bigger. Treatment failure feels a lot more personal. As practitioners, we have put all our faith in the ritual and possibility of medicine. We believe that with the right therapies, healing is possible. But even with evidence-based guidelines to guide us, there is an element of luck to patient care. What happens when you are blindsided? What happens when it doesn’t pan out? What happens when there isn’t a positive outcome?
In 2015, my life changed twice. In January, my first child, Wyatt, was born. In March, it took six days from head growth significant enough to warrant an MRI to immediate emergency surgery to removing supportive care. My first child died in my arms in a pediatric ICU. From pharmacy school, I felt decently comfortable in a hospital, but it was different to be on the receiving end of care. It was different to be the one in charge of continuing care. He was 71 days old, with something, most likely a tumor, covering two-thirds of his brain. It takes 10 days to get biopsy results, but Wyatt didn’t have that long before his brainstem was expected to drop.
The morning after Wyatt had coded for the second time within a day, one of the nurses asked, “Emily, I know you are a pharmacist. Do you want to be a part of the care team or do you just want to be his mom?” I chose to be his mom. I did not want any culpability in providing for my child. The two roles are not inherently dichotomous, but this situation was not in my wheelhouse. I didn’t know how to care for pediatric ICU patients. I really appreciated the offer to be included and the knowledge that I would be allowed to be as involved as I wanted to be. But I did not feel that my expertise was going to add anything to our care plan.
In addition to all these other factors, I was rapidly processing a fatal diagnosis for my son. I did not have the frame of mind to be treating anyone. My husband and I had watched in horror the night before as a code was called because our son had stopped breathing. We were allowed to be in the room if we stayed where we were sitting and out of the way. We were told that studies had shown that allowing us to stay and watch our son’s “demise” would help us more quickly process the negative outcome. The nursing staff, chaplains, and bereavement coordinators who met with us were helpful. Offering services we didn’t even know existed. We held a baptism. We had visitors at 4 a.m. because we were told, “If the grandparents want to see him alive, they need to come NOW.” They made imprints of his hands and feet. They saved the lock of hair they cut for the first emergency surgery.
But the most valuable thing they did was to ask if we wanted a photographer to come. Now I Lay Me Down to Sleep is an amazing network of photographers who take pictures of parents experiencing early infant loss. Those images are gut-wrenching, but invaluable.
In that moment of extreme loss, it was nice to have my wishes acknowledged. It was nice to have someone provide me with a choice I could make. (In the same way you ask a toddler if they want to wear the red socks or the blue ones.) A fact that I’m still appreciative of eight years later. Ultimately, it didn’t matter who was on the care team. There was not going to be a miracle, medical or otherwise, to save my child, who was riddled with a tumor. The posthumous biopsy results revealed large cell medulloblastoma (WHO grade IV).
Personally, I had enough difficult decisions to make as a parent. I did not need the extra pressure of wearing my pharmacist hat too. In fact, I was relying on my best friend, a medical resident who happened to have the day off, to be the fact checker of all the information we were given that fast-paced day. (She was a godsend, bringing donut holes and real tissues. That is one thing Wyatt has taught me: Always bring real tissues, the one-ply ones don’t cut it.) In the end, I did all I could. With the help of his care team and our families, we determined a DNR was in order, but I was not physically able to sign the paperwork. My nonmedical (electrical engineer) husband had to step up to the plate and sign.
I appreciated that one of Wyatt’s doctors had also experienced the loss of a child. She made sure to emphasize to me (and my parents) that being a pharmacist was a cognitive service and that grief was going to acutely cloud my cognition. She warned me not to go back to work until I was ready and gave instructions on how to get medical leave. That advice was invaluable. It protected my patients because I was able to take care of myself before I had to return to helping others. It also has allowed me to give myself the grace I need around his birthday and death anniversary to work a little slower and double and triple-check myself as warranted.
In the end, I’m not saying that in these cases it is harder to be the patient than the physician. We all know that is not true. I know that everyone on my son’s care team was affected by his loss, and we all felt powerless to stop it. I hope Wyatt’s care team was able to take a moment together to debrief before they had to move on to the next case. I know I already mentioned this above, but I can’t express enough how grateful I was for the agency to decide how involved in Wyatt’s care I wanted to be. When I was utterly powerless, I could just be a mom.
When have you had to step back from being a doctor? Share in the comments.
Emily Wetherholt, PharmD, BCACP, lives in Schaumburg, Illinois, with her husband, three active children, and dog. She is passionate about advancing the cause of pharmacists everywhere, serving on the Illinois Pharmacist Association Board of Directors. When she isn’t advocating for pharmacy, you can find her exercising with her Fit4Mom friends. Dr. Wetherholt is a 2022–2023 Op-Med Fellow.
Illustration by April Brust and Jennifer Bogartz