Dr. Ackerman, to continue your analogy, I guess my position now would best be described as an owl, quiet and watchful but (with age) respectful of others’ territories. Thus, I feel that as individuals the students and residents in this and recent generations have learned to assess the patient with a great store of empathy.
But when Andrew was alive, over 20 years ago now, there were two incidents in particular that were not so positive. The first was when the physician, a researcher at a hospital down the road, and his residents came into my infant son’s room to tell me that, while they knew little about the disease, his condition was terminal. I was there alone that day, and scared, and had to relay that information to my husband and our families myself. That was no one’s fault, but the diagnosis/prognosis came so quickly and chillingly even though we expected worrisome news. The other incident did not seem negative at the time, and certainly is a measure of the progress in research that our institutions have made over two decades-plus: we were desperate for any measure that might help Andrew and when an investigational drug was offered, we jumped on it. What I’m less sure of in retrospect is that I recall only minimal explanations about the drug, and moreso, it appeared helpful at least to a small degree yet suddenly was removed with little explanation. Again, this was at a hospital in another state, and the researcher now is rarely involved in the study of this disease – I know this because I have followed his studies, not from any personal contact: I never heard from him again after Andrew passed. Now, working in the field, I know that our researchers will carefully inform the family of all parameters of the research through the consent process, and that the family will remain in the loop throughout the study. And it would help during research if the family members are definitely mockingbirds!
However, positive incidents can also be instructive, and there were so many during Andrew’s life: every single nurse was gentle, and often seemed as touched by Andrew’s sweet and funny personality as we were by their caring. When we first received his diagnosis, our family physician got on the early internet to research articles, as did a cousin, a pediatrician at that time at Mass General. Their lit searches were quite informative. The child life staff was beyond belief; every day, they were there to play with him, talk to him, watch his favorite movies with him (Top Gun, Ferris Bueller’s Day Off:). I was so delighted to see a child life staff here, too! Because of child life, Andrew got to meet everyone from NASCAR drivers to Dan Ackroyd, and he remembered every detail of those visits.
Frankly, I may have blocked out some of the more difficult moments in the course of Andrew’s disease. But by referring to the need back then for palliative care, I’m talking not so much about Andrew but about ill children and their families in general. In an odd way, I know we were fortunate to have been educated, have friends and family in medicine, to feel empowered to ask questions, etc. Due to income and circumstance, we were also fortunate to have been able to be mockingbirds as much as we were. But the average family member often is not as educated, or as confident about asking questions; by observation, I can tell you that they often are both frightened and intimidated by the very fact of their child being in a hospital. The language of medicine (from MRIs to ‘sticks’) is often a foreign one to them. The noise, the smells, the unknowns: these need guidance from a professional with compassion and a gentle nature. In the more difficult circumstances, someone to explain options for palliative care could bring peace to family and child.
The nose-diving mockingbird comes with the territory. We must protect our young. But students and residents might want to pick up a few extra skills during pediatric rounds, such as being deft and able to deflect (with kindness) sharp talons, and most importantly, the ability to communicate and follow up with clarity and empathy.
I do have one more memory, an important one; though it may be common practice, it was extraordinarily meaningful. Andrew had made friends with Dr. Simon, the chair of the department, over the years. In Andrew’s final moments, Dr. Simon brought in his residents and they stood to the side, with respect and reverence, as we said good-bye to our son. Dr. Simon, too, was an owl.