Show Me

“I’ve read your son’s chart, so I know about his medical condition. I was hoping you could tell me about what your son is like as a person,” I said.

The tears started to flow. “Nobody has ever asked me that before,” his mother said.

My new patient was a school-aged boy with a rare genetic condition that left him with severe neurologic impairment (SNI). A recent consensus definition of SNI describes it as “a group of disorders of the central nervous system which arise in childhood, resulting in motor impairment, cognitive impairment and medical complexity, where much assistance is required with activities of daily living.” Many of these children are also non-verbal and thus rely on a caregiver to communicate their needs.

As a pediatric palliative care doctor, I’m used to meeting children and families during challenging times. I’m also used to many people not knowing much about my field, so I often begin new consults talking about what palliative care means and the types of things our team may be able to help with—easing pain and suffering, accompanying people on the journey of severe or life-limiting illness, and making sure the medical care people receive is consistent with their goals and priorities. In order to do this last piece well, it’s crucial to learn as much as possible about the person we’re caring for.

In medicine, we often talk about clinical baselines for illnesses such as asthma or heart failure. For children with SNI, whose clinical baseline may be atypical and unique to them, I try to learn as much as I can about their overall personhood. I’ve found that this can sometimes be difficult for a parent to describe in words, but much easier to show.

Since most people now carry smart phones with photos and videos, I often begin new consults asking a parent to show me photos and videos of what their child’s life is like at home. It’s so common to hear parents of children with SNI talk about how medical teams always see their child at their worst moments, and never get to see them at their best. Beginning an inpatient visit with a review of photos and videos of life at home takes only a few minutes, but it’s an invaluable window into someone’s personhood when they’re at their best. It gives crucial information about what a child’s life is like that we can then use to help families navigate medical decisions and ensure the care they receive is consistent with their values and priorities. Here are some helpful strategies:

1. Ask open-ended questions.

“Tell me about what a good day looks like at home.” “What are some challenges?” “What brings joy?”

2. Ask your patient or their caregiver if they’ll share photos or videos on their phone.

This builds rapport and allows you to see a clearer picture of what your patient is like at home.

3. Describe what you’re seeing and hearing. Frame this as the patient’s baseline.

This establishes a shared mental model of a baseline between clinicians and families. From there, doctors and families can create a shared goal to work toward. It can also set the stage for more challenging conversations if it seems that a return to the baseline may not be medically possible.

By the end of our initial consult, that child’s mother knew what palliative care was and how our team could help her son.  Our team now had an excellent idea of who she and her son were and how we could best advocate for them. As Dr. William Osler said, “It is much more important to know what sort of patient has a disease than what sort of disease a patient has.” Asking to see photos and videos from a patient’s life at home is my favorite way to find out.