At school, aside from English, I learned two European languages. If I could go back now and pick those other languages again I would do it differently. I would pick something that I would really find useful now, like Punjabi or Urdu. And, I would ask to be taught to lipread.
Lipreading is so often the language of intensive care.
I am standing beside one of my patients who has been weaning from a ventilator for more than a month. Each day she is little bit brighter. She has come through her delirium and lost the glassy-eyed unfocused look that had accompanied it.
When I speak to her now, I know that she understands me. I know that she is taking things in. What’s more, she has started to mouth words back at me. She has a tracheostomy and she cannot manage with a speaking valve, so she moves her lips to communicate, and I do my best to try and figure it out.
I am terrible at lipreading. I try and catch words, I say them out loud and she shakes her head, because that is not what she has said. You might ask why I could not just give her a pen and paper, but weeks of critical illness has left her muscles wasted and she cannot, yet, manage anything quite like that.
I feel so useless. I tell her I am sorry.
I am so sorry, and I ask the nurse at the end of the bed if they can help, but the nurse struggles too and in the end our patient says it doesn’t matter. She smiles, kindly, like she really wants me to think it doesn’t matter.
But, it matters.
One day she needs a pacemaker check and I ask her son to bring me in the pacemaker card, so I can tell the electrophysiology team about her device. Her son dutifully brings it in and the patient tries to tell me something again. Something about the pacemaker and she seems frustrated like she’s trying to tell me that card isn’t hers. But her name is on the top of it and her date of birth.
The date of insertion recorded is just over a year ago and her family are adamant that she has only ever had one device. I ask the patient if she’s had another pacemaker since then and she shakes her head to tell me no.
But she seems so frustrated and I try again to read her lips and I fail. The nurse says she’s been a bit off today and her husband says she’s just not herself. So I say, ‘OK’ and I walk away.
Later the team come to check her pacemaker, but they get stuck, because the device they have brought to do the job just won’t work. I pull up a chest x-ray and the physiologist examines the tiny markings on the box inside my patient and says: ‘Ah, that explains it... that’s a different device’.
He leaves us, to go and get the right equipment.
I look at my patient and say ‘your pacemaker card is wrong’.
She smiles and she nods.
And I say: ‘I’m sorry, you knew all along, and I couldn’t understand you.’And she nods.
And I say: ‘I cannot wait until I hear your voice.’
By the Secret Doctor
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I am not yet a doctor but understand this frustration. I was volunteering at a respite centre for disabled people and there was one wonderful woman who had MS and had lost most motor function and her speech but could move her lips. It was tough to understand her and frustrating for both me and her as I asked her to repeat sentences but she appreciated just being listened to. It emphasises just how important communication is. Thank you for another insightful blog.
I work as a psychiatrist and have frequently used interpreters for people who don't speak English and sign language interpreters for people who have hearing problems. I have a couple of thoughts about communication with people who are in this lady's situation. Could the hospital consider using interpreters for the deaf, who can lip read? Could they consider including a speech therapist to generate ways to support communication, such as an alphabet array?
It may help you and the lady feel that you are doing something to help improve the service...
Really interesting blog, thank you. I hope you view my suggestions as helpful. Keep up the good work!
You could have asked for help from someone who can lipread! We get interpreters for other languages
Speaking for myself, I struggle at times to read my language on the lips/mouth of an intubated/'trached' patient. The edentulous individual is particularly challenging.
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I love this - very thought provoking. It reminds me of an autobiography I read of a young locked in woman:
Running Free: Breaking Out from Locked-in Syndrome, Book by Alison Stokes and Kate Allatt
well worth a read.