Yesterday’s post discussed communication strategies for GI patients with severe underlying diseases. A related article (S McCarthy. NEJM 2024, 391: 2072-2073. The Care That Saved Me) provides additional insight into the importance families place on the care that they receive.
The author is a pediatric psychologist at a large academic medical center. One of her daughters died at 5 years of age from cancer and she reflects on her experiences and what she learned; though, she states it is a “knowledge I wish I didn’t have.”
An excerpt:
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… 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…“What do you want your health care team to know about you?” and “What makes you happy?” …
Third, cultivate practical compassion…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…
Fourth, learn how to sit with darkness, while allowing for light… 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...
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...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.
Related blog posts:
gutsandgrowth 