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It was not unusual, back in the day, for relatives to be told about a patient’s diagnosis and poor prognosis and for this information to be withheld from the patient.
Family and professionals would then enact an elaborate charade that everything was fine and that there was nothing to worry about.
I can’t imagine what that must have been like for the patient — bemused, aware things weren’t right but either feeling unable to voice fears or having them dismissed and minimised if they did express them.
The patient was admitted with a Glasgow coma scale of three, intubated and scanned. A large cerebral tumour.
Given her condition, and that she was not expected to regain consciousness, the findings were discussed with the family.
However, she woke up — amazing stuff, dexamethasone — and was transferred from ITU on to a general ward.
The main reason for referral to us was that the family were policing all interactions between healthcare staff and the patient to prevent anyone discussing anything about her condition with her.
The ward staff were anxious that this was potentially impacting on her care, not least the potential for her to make informed choices about future treatment.
So off we trotted, the Macmillan nurse and I. At the door of the side room we were met by the patient’s husband, standing guard. By the bed were two adult children.
I introduced myself, reassured them I would not be giving any unwanted information, and asked if I might talk to the patient.
After a few questions about symptoms — no, no headache or nausea — I asked her what she understood to be happening.
‘When I was unconscious in ITU,’ she said, ‘I could hear them talking round my bed, and I heard them say I had a brain tumour. Is that true?’
My flabber was well and truly ghasted. Yes, I conceded, I was sorry to say that did appear to be the case.
I was unaware of anyone else in the room, so focused was I on my patient.
My Macmillan nurse later told me that the husband was quite literally jumping up and down saying ‘don’t tell her, don't tell her’ but even he had to agree that I hadn’t told her — that she, in fact, already knew, and this was now an opportunity for them to move together as a family into the uncharted waters of the illness voyage.
As well as thinking about who is party to what information, I was intrigued by her articulate recollection of what she heard in ITU.
In palliative medicine, we maintain that unconscious, dying patients may well be able to hear what’s going on around them and this would appear to give some credence to this.
I often encourage families to be chatting, remembering the good times and even having a laugh, and I am always mindful about what I say in the patient’s earshot, however close to death they appear to be.
Becky Hirst is a consultant in palliative medicine in Barnsley
Read the third and final report, reflections and recommendations from the end-of-life care and physician-assisted dying project, and join the discussion on our dedicated community
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