The care that saved me
Nancy L. Glass MD and Myron Yaster MD
“Our work matters. Small acts of kindness and moments of connection, seeing children for who they are, makes a difference. Patients and families do not forget them. And during the absolute hardest times, these acts sustain them.”1
I don’t often do this, but today I am reposting in its entirety an article by Dr. Sarah McCarthy1, a pediatric psychologist at the Boston Children’s Hospital, that was recently published in the New England J of Medicine. She describes the loss of her child to cancer and how it affected her personally and professionally. We can all learn a lot from this article and I hope you will all read in its entirety. Myron Yaster MD
From Nancy L. Glass MD
This essay written by psychologist-mom Dr. Sarah McCarthy, leans in hard to steps we can all take when engaging with seriously ill children and their parents. The story of her daughter’s illness and death brought her to these truths she said she’d rather not have learned, but she has shared them graciously. 1) “Strive to illuminate the patient’s personhood.” The children we care for are more than just their age and diagnosis. 2) “Make an effort to understand (their) life outside the hospital.” 3) “Cultivate practical compassion.” Ask about parental self-care, whether they’ve eaten or how they’re sleeping. Encourage healthy habits and contribute to their well-being. 4) “Learn how to sit with darkness, while allowing for light.”
I believe that these steps not only improve the care we deliver to our patients and families, but they will also fuel the engines of our own compassion and engagement. We will be more satisfied and fulfilled in our profession from extending ourselves in the ways Dr. McCarthy has described. Reflect on how you would want to be treated if you had been in her shoes and do that.
Original article: Perspective
McCarthy S. The Care That Saved Me. N Engl J Med. 2024 Nov 30. doi: 10.1056/NEJMp2407628. Epub ahead of print. PMID: 39620451.
I am a pediatric psychologist at a large academic medical center and a health services researcher. Beyond my professional identity, I am the mother of twin girls, Molly and Emma. In April 2020, Molly was diagnosed with two cancers, and by 2021, a third cancer had emerged. She died in 2022 at the age of 5. The day my daughter died, a nail-painting station was set up in the pediatric intensive care unit (PICU).
I never chose to have my personal and professional lives become inextricably linked. I wish I were writing this essay solely as a clinician and researcher. But given my reality, I’ve chosen to lean into the knowledge I wish I didn’t have. Although I don’t find meaning in Molly’s illness or her death, I believe I can find meaning in sharing what I have learned and how I have changed. I am a better clinician and a different researcher than I was in 2020 — a truth that is difficult to accept because I would give anything to be who I was before. These experiences have made me rethink clinical practice and research in service of children with serious illnesses.
As a clinician, I have identified four practices that I now prioritize in my work, emerging from Molly’s illness and death and my bereavement.
First, strive to illuminate the patient’s personhood. Toward this end, I now write my notes differently. During Molly’s ICU stay, rounds began with, “Molly is a 5-year-old girl with a history of ALL and neuroblastoma now MDS who was proactively intubated….” In my mind, I always added: “Molly is an energetic and creative 5-year-old girl. She loves playing the ukulele, writing plays with her twin sister, snuggling, and listening to books read aloud. She dislikes shift changes and has been known to set off her alarms to bring the nurses back.” Though I don’t include this level of detail in my clinical notes, I do make sure to include information that helps me and other clinicians see each patient as an individual,1 illuminating their unique personhood.
Second, make an effort to understand life outside the hospital. My experience with Molly underscored the importance of seeing the child and their family members as people both inside and outside the hospital. I now ask children questions like, “What do you want your health care team to know about you?” and “What makes you happy?” and “If you weren’t at the hospital today, what would you be doing?” I document their answers in the medical record. This information allows me and others to connect with patients and their families on a deeper level, providing context about their unique life circumstances that may affect their ability to cope with the demands of treatment.2
Third, cultivate practical compassion. When I met with families in the past, I always provided an assessment and offered evidence-based interventions aimed at alleviating distress. Though I still do these things, my approach looks different now. First, I ask parents when they last ate, drank something other than coffee, or slept. If a parent has not eaten or slept, I pause my interview and offer to help meet these immediate needs before continuing. Doing so sometimes disrupts my schedule, and I know that as clinicians, we are often pressed for time and balancing multiple demands. But taking these small steps to recognize and address basic needs allows me to see the families I care for as humans and prioritize their sleep and nourishment.
Fourth, learn how to sit with darkness, while allowing for light. I have learned from grief. I am more comfortable sitting with darkness, anger, and gut-wrenching pain. I go to those dark places to be present with others who are in them, to bear witness. To not turn away from their pain, from their big uncomfortable emotions. I don’t try to fix a pain I know is unbearable, but I let parents know that they are not alone, that their love for their child is seen and their grief is witnessed. I also allow myself to put that darkness down for a bit to continue functioning, to smile and laugh, to be present, to connect. This work now sustains me in new ways. I have shifted from practicing with empathy — hurting for my patients — to practicing with compassion, seeing their hurt and responding, sometimes with a specific intervention and always by seeing them, being present with them, recognizing our shared humanity.
As a researcher, I have shifted my approach because of my experience with Molly. I now choose only projects likely to have direct effects that advance the priorities of patients and their families. This focus is not negotiable for me anymore; I am committed to centering my research on the voices of people with direct experience of serious illness and bereavement. I therefore have to actively collaborate with and budget for these partners and use nontraditional methods to illuminate the often-unseen experiences of patients and caregivers.
As a psychologist, I have learned that small interventions can have substantial impact. After Molly’s death, I worked with two PICU nurses to develop and test an intervention for alleviating parent-caregivers’ fatigue.3 It involved educating parents and staff about caregiver fatigue, as well as training staff on caregiver support, including the provision of practical items (such as sleep masks and shower steamers) as part of a “parent code cart” — all of which helped staff notice and respond to parents’ suffering. After we had deployed the intervention for 6 months, we found that staff members’ compassion had increased, their feelings of depersonalization had decreased, and they had greater confidence in their ability to assist families. Both staff and parents described the care as more personal and connected than it had previously been.
A few days before Molly died, I returned to the PICU around 3 a.m. to find my daughter’s room filled with people. Seeing my panic, one of the primary nurses grabbed my hand. “It’s OK,” she reassured me. “We are just giving her a manicure. We know she likes to be fancy. Red and blue, her favorites.” As tears rolled down my cheeks, I marveled that a team who had only known Molly when she was intubated and heavily sedated could see her so well. The day she died, we brought Molly’s twin sister, Emma, to the hospital to say goodbye. Outside Molly’s room, a nail-painting station was set up for Emma. For over an hour, I watched as Molly’s nurses, social workers, doctors, respiratory therapists, and others sat down with Emma to have their nails painted. To talk with Emma about Molly. To share stories. To listen. To love. These were not billable interactions; there is no procedure code for compassion or connection. To this day, this sweet kindness is what I think of when I remember the worst day of my life.
The biggest thing I have learned is this: our work matters. Those small acts of kindness and moments of connection, seeing the children for who they are, make a difference. Patients and families do not forget them. And during the absolute hardest times, these acts sustain them.
It has been 4 years since Molly became ill and 2.5 years since she died. I have dug deep and still struggle to make sense of what happened to my child and to our family. Amidst the darkness, I have found a tiny point of light: the best medical care in the world, the most advanced science, could not save Molly, but the compassionate care that our family received saved me.