Sometimes patients are the experts who need to be listened to, suggests David Foster
I know an expert patient. Well, I guess that’s what we might call her, but she would disagree: she does not see herself as either an expert or a patient.
Mrs MacLennan is an 84-year-old widow who has lived alone for 18 months. She’s independent although she has a little help with the cleaning. And, because of her deteriorating sight she can no longer drive but has become adept at using the local buses. She’s also a bit deaf and her knees won’t carry her as far as they once did. But her main problem is her breathing. She has perfectly good lungs, but her small voice box and stiff vocal cords mean that she can’t get as much air into them as she sometimes needs. It’s an odd phenomenon, which responded to cutting edge (literally) laser surgery a few years ago. This innovative technique shaved the edges off her vocal cords to give her a better chance of breathing in as much air as she needs. As a consequence she has a quieter and hoarser voice but can breathe easily.
Despite the odds, talking is not a problem, it really isn’t. But getting her voice heard can be. When we suffer coughs and colds and moan relentlessly about them, we tend to recover quickly. Not so for Mrs MacLennan. Her inflamed cords swell to obstruct her airway to such a degree that when she inhales the sound is a dramatically rasping stridor and, if untreated, could be life-threatening. The first time it happened there was a whizz to hospital in an ambulance. The drama quickly subsided as she was rapidly treated with intravenous antibiotics and steroids. Equally rapidly her breathing returned to what’s normal for her. And so, she, her family and her GP learned that next time they needed to react to the signs more quickly by giving steroids and antibiotics and preventing the drama being repeated – that is, give oral medicines and keep her at home and protect her independence. This has worked on a number of occasions, until last time.
What the patient wants
Recognising the early signs and the need to prevent her condition deteriorating, Mrs MacLennan presented herself and her stridor to the GP at the surgery expecting the usual regimen of tablets and the instruction to rest at home. Her GP was new and for some reason he did not hear her. He was not confident that Mrs MacLennan’s usual treatment was the best on this occasion and wanted an expert opinion. And so the ambulance was summoned, the whizz to hospital was uneventful and she was seen by the experts. Up went the drip and in went the antibiotics and steroids. The situation was resolved and she was discharged home, not as a patient but as an independent woman. None of her treatment was really wrong. No one lacked compassion or competence and she was grateful for the right outcome. But it was not what she wanted or really needed. Her hospital admission could have been avoided, and she wanted - and could have had - care at home. Mrs MacLennan was the expert whose opinion should have been noticed.
Staying independent is part of Compassion in Practice. This focus is not just about prevention, early intervention and avoiding hospital admissions. For me, recognising Mrs MacLennan’s experience, it is just as much about listening to people, hearing what they want and need, treating them respectfully as experts in their own care and helping them protect their independence.
Take care Mrs Mac and good luck next time!