He's In the Room and Has a Name | Practice Up! for Advocates and Care Managers

My childhood best-friend’s father, Ed, was in his late 70s when he began to deal with difficult medical problems. A cancer diagnosis led to surgery, chemo, myriad tests and treatments…. and, of course, many doctor appointments.

His daughter, Janet, was a stalwart advocate for her father, driving 90 minutes each way, week-in and week-out for years. She attended all her father’s appointments, took notes, asked questions, filled prescriptions – in short, all those things we do as advocates, which many of us can relate to.

I used to check in with them both every couple of weeks to see how things were going. On one of those calls Ed, frustrated, reported:

“You know – when the doctor is talking, he talks to Janet – and calls me “He” and “Him”. He doesn’t talk to me! He talks to her, as if I’m not even in the room.”

I can only imagine how insulting this must have felt to Ed – or any patient who is being discussed as if he or she isn’t present. Further, it’s entirely possible the doctor has no idea how he is coming across.

I’m going to guess you have witnessed this, too. In fact, some of you have done the same thing. In particular with an elderly person, or a patient with dementia, or certainly a young child, it’s so easy to have a conversation with a spouse or adult child or some other caregiver, and discuss the patient as if he or she isn’t present.

But, when it comes to any adult patient or older child who is conscious and able to comprehend the discussion, it is highly disrespectful. These patients are not objects to be discussed. They are living, breathing, intelligent human beings. You are discussing THEIR bodies, THEIR health, THEIR diagnoses, THEIR treatment needs, THEIR lifestyle changes, THEIR LIVES! – and those questions and discussions need to include and embrace them as integral participants in the conversation.

It’s about dignity. It’s about respect. It’s about valuing their input and participation.

It’s incredibly insulting to pretend they aren’t there.

My suggestion to Ed was that he speak up – that he ask a question, or politely remind the doctor that he’s part of the conversation. Janet isn’t a professional advocate – she’s a daughter. She wouldn’t necessarily know to command respect for her dad, although we’ve had that conversation since then, including her role to remind the doctor that Ed is the focus, not a bystander, to the conversation.

You, as a private advocate or care manager must make a conscious effort to include your client in the conversation, whether other participants include providers, or family members or other professional caregivers. I suspect there might even be a ripple effect – more cooperation, better adherence, improved quality of life.