The Expert in the Room

If you are wondering who it is, a mirror may help.

Expert and expertise are not the same. When these roles and attributes are misplaced, well-intended actions may lead to results opposite those desired. Patients (or those designated to speak on their behalf should they be unable to speak for themselves) are always the experts on their own lives. As a doctor, I can offer my expertise once I know what matters most to my patients. Only then may I apply my expertise to match what they, the experts, have identified as being essential to their lives. 

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Sheri's chronological age does not match her body's weathered appearance. Like so many who have experienced adverse childhood events (such as physical and emotional traumas) associated with negative health outcomes, Sheri has struggled with substance use disorder and unstable housing. She lost custody of her two children when they were toddlers. Now in their twenties, Sheri has rebuilt her relationship with her children and dreams of taking them and her new grandson to Disneyland. One of the greatest barriers to her realizing this wish is the infection ravaging her body. She has lost several toes and fingers due to her poor blood circulation and is at risk of losing more. She has a wound on her back that is so deep it requires special weekly dressing changes in the operating room. 

Her medical team is becoming increasingly concerned that the things we are doing to Sheri are causing her more harm than good. Sheri is becoming so weak that she spends very few hours awake. And since her children have been estranged for so long, neither feels comfortable speaking for her. This is, unfortunately, a common scenario. Fortunately, clarifying goals of care in complex situations is a common reason for requesting a palliative care team.

"Sheri, I see how tired you are,” I say at the start of our team’s visit.

Sheri nods. Her eyes are only half open.

“I don't want to add to your fatigue.” I pause to see that she is still awake before continuing.

She softly mumbles, “Go ahead.”

“I do want to make sure we are doing the things that really matter to you. I don't want to assume."

Sheri opens her eyes for a moment as if to survey the statement’s validity. After a moment, she gives a smile before closing her eyes again.