What I want from all the healthcare professionals we encounter seems to be too much, because I don’t get it from most of them. I assume clinical competence. I hope for emotional competence.
I get assumptions rather than questions. I get excitement about diagnosis but not compassion about its impact on us. I get intimidation and scolding rather than appreciation for sharing information. They seem far more focused on where they are rather than where we are, on what’s important to them rather than what’s important to us.
An acquaintance from a Parkinson’s support group recently called to ask if we liked our neurologist. She and her husband were unhappy with his doctor. We’d had his doctor and left the practice. That neurologist was very pleased with himself, with having a community reputation for his diagnostic abilities.
Larry was frustrated with the Parkinson’s meds not working and that same doctor offered up the possibility of a potential ALS diagnosis. He seemed intrigued with the possibility and potential satisfaction for getting a diagnosis right, but showed no compassion about what that might mean to us!
Then there was the hospice social worker who called three times without identifying himself other than a first name, and then proceeded to insist on coming to visit Larry early in the day, though in our chart it asks for afternoon visits only. I explained that Larry sleeps until 11. He said he’d come at 11. No, I explained, he needs to dress, eat breakfast, and have his respiratory treatments. He said he’d come at 11:30. No, I said, nothing happens that fast here. He proceeded to get angry. His goal was to check off appointments on his list, not help us. Rather than offering support, he completely irritated me.
Most recently was the disconnect between my concerns about Larry going to a hospice house for respite care and the assumptions the hospice nurse made. Also, the scolding I received for the information I provided when Larry arrived at the hospice house.
My concern was his quality of days at such a place, and my guilt that it seemed to be a selfish thing to ask of him so I could rest. Our hospice nurse thought I was worried he wouldn’t get good medical care in case of emergency. I was worried he’d have a miserable lonely time and they wouldn’t understand his disease. She assured me they were highly competent nurses. They’d know all about his equipment and could just follow his “plan of care” on his record. I wanted to bring him there and get him settled. She thought he should go by medical transport.
See any disconnects? Tomorrow I’ll share the result of those disconnects.