First published on ehospice.
In my professional life, I have led numerous meetings, many of them with pivotal decisions or necessary outcomes, but never have I felt such great mental and emotional weight as at the initial care conference with my firstborn’s medical team. The experience came while my daughter was in the NICU for almost a month after a non-eventful pregnancy and a smooth delivery. After a surprise rare genetic diagnosis and prolonged breathing tube placement, our family was eager to discuss the direction of our daughter’s care.
A care conference is a meeting of the patient and family with the health care team. Care conferences are often convened when a hospital stay is long, there are complex medical problems or something in the patient has changed unexpectedly.[1] I first learned about the concept of a care conference from our palliative care team, who recommended we initiate one after multiple failed breathing tube extubation attempts. Instinctually, I knew we needed this meeting, but I was nervous because I understood it would set the direction for my daughter’s care, and the outcomes of the meeting could impact my family significantly. I was also nervous because I didn’t know what questions were reasonable to ask, and I did not know if the busy clinicians would think it was a waste of their time for me to ask questions like when/whether my intubated one-month-old would be able to receive physical or occupational therapy. I felt inadequate because I thought I was supposed to “own the meeting” because it was about my child. Fast forward five years and nearly a dozen care conferences under my belt, I still feel nervous for similar reasons. Luckily, our palliative care team always makes me feel it is reasonable to request a care conference and reminds me that my questions – big or small – have a name – advocacy.
At my first care conference, I leveraged my professional background to develop an agenda. I included a title, the time and place, and the attendee list. I included our top priority questions and listed secondary questions. I usually don’t add colors to the agendas, but I chose a colorful template. After all, this wasn’t an ordinary meeting, and having an organized agenda with a bit of personality increased my confidence as the meeting approached. If I could not control the outcome of the meeting, at least I could control the color of the agenda. To this day, I still follow a similar structure, even when we have the conference as an outpatient.
But truthfully, having the “perfect agenda” does not always quell my worries. Recently, we held a care conference with nearly 30 participants. I still felt nervous, even though we have a trusting relationship with everyone who attended the meeting. I experienced the same feelings of inadequacy and prepared hard for weeks on how to run the meeting effectively, especially as there were many issues to address in only an hour. With such a large group, I wanted to include a lot of contextual information in the agenda so everyone could have a fair view of my daughter’s quality of life. I even planned to bring treats for a virtual meeting – a positive addition to the meetings I implemented early on. But in all this planning and self-imposed pressure to run the leanest care conference for a dynamic, thriving individual with very complex medical needs, I forgot to give myself heart space to be her mother—a mother who has gained so many caregiving and care conference skills but also has scary memories of my child nearly dying multiple times. I began to realize that if I didn’t give myself the heart space to be a mother who cannot control the outcomes, my head space could be too full and chaotic to be the parent my daughter needed me to be present with her for the time we do have together.
To help me declutter my mind, sort my emotions, and find space to be my daughter’s mother first and her care coordinator second, I once again turned to our palliative care team. Our palliative care doctor and nurse allowed me to talk through the topics I wanted, not expecting my thoughts to be neat or structured. They met where I was – not just emotionally but literally – my daughter was in the CT scan room under anesthesia, and they came to find me in the waiting room. They even walked with me to a nearby eatery after they learned I had skipped breakfast to get my daughter to the early morning appointment. They allowed me to feel comfortable, both physically and mentally. And in that comfort, I was able to narrow down what I wanted to cover, prioritize agenda items, and worry less about being the perfect meeting organizer.
Experiencing a care conference is something a parent rarely forgets, regardless of how many times they attend one or how familiar they are with the medical system.[2] Understanding the special emotional weight care conferences carry for parents is a critical piece of the effectiveness of a care conference. I am fortunate to have our palliative care team to process with and walk alongside me as I face all my daughter’s future care conferences.
[1] Nationwide Children’s Hospital. Care Conferences for Families. https://www.nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/care-conferences-for-families
[2] Palliative care: I was able to unburden my worries to one person … and then the care conference allowed us to talk about everything. CPN. (n.d.). https://courageousparentsnetwork.org/videos/palliative-care-i-was-able-to-unburden-my-worries-to-one-person-and-then-the-care-conference-allowed-us-to-talk-about-everything