Should a patient be taken to hospital in this situation or left to die at home ?
I am currently discussing some end-of-life issues with a Professor in care of the elderly, and while we seem very close on most issues, I think we are not as close, on the one I have just asked him (and a few other contacts) about, this morning.
Any answers on this one (with your 'role', please) would be appreciated. My 'gut instinct', is that the 'she should be in hospital' decision, seems much less clear-cut if you are the child, than if you are the clinician ?
I'm starting to work out where we do not necessarily agree - I tend to revert to self-determination, you think much more about 'safeguarding'.
Do we agree, about this one - this is my own experience, from my mum's death (I dislike referencing my mum's death, because it really was horribly complex and confused).
Basically, my mum did not want to be treated - and I'm pretty sure she knew she was dying. My position, was essentially that I couldn't tell my mum how she should die, because that was up to her.
During one evening, a day or two before she became 'peacefully comatose', I had noticed (as I stayed awake throughout a December night, to stop my mum from removing her clothes to fold them up - I have a theory about this 'folding/tearing episode', but that is perhaps for another time) that every so often, she held a hand on her head.
So the next morning, I asked her "You were holding your head, last night. Was there a pain in your head ?" She nodded 'yes'.
"Is the pain still there ?" She nodded 'yes'.
"If you go to hospital, they might be able to take the pain away. Do you want to go to hospital ?" She shook her head, 'no'.
Now, I was 100% happy with my mum's choice - she consistently stuck with 'I'm going to die here, at home' - although I didn't like her being in pain (I tried to sort out some pain relief, but before that happened, my mum had lapsed into a 'peaceful coma').
But, this would have troubled me, if it had happened. If my mum had moved to a condition I will describe as 'Clearly in pain and only aware of pain' (a friend of mine died in that situation - it was obvious he was in great pain for several days, but otherwise 'totally out of it'), then I'm pretty sure that would have been a problem for me, if adequate pain-relief could only be provided in hospital. I would have been conflicted between 'She was absolutely determined to die at home, where dad died' and 'she doesn't know where she is, and if she went to hospital, she would not be in pain'.
I don't know, which one I would have chosen (other than, obviously, pain relief at home - I am ruling that one out, for this 'thinking exercise').
But my suspicion, is that you will probably argue 'the in hospital, no pain' option ?
Hey Mike :)
Umm, will have to disagree with you on this occasion.
I would respect your mother's wishes and allow her the option to stay home. You can now get morphine prescribing nurses in the community so your mother would have been able to get stronger analgesia (I know you outruled that option - don't undersntad why really).
I don't like the saying you used 'she doesn't know where she is, and if she went to hospital, she would not be in pain'. because you don't know what people know or are aware of.
Even if pain relief was 'ruled out' as you say, I would still respect her wishes and allow her to stay at home.
I have nursed a really sick cervical cancer lady and she was in agony every day. She refused pain relief because she said 'I don't want to be drowsy for my family' and watching her in pain was horrible. But unfortunately as nurses, students, professionals, whatever you have to respect their wishes.
Dannie, student nurse.
Hi Dannie - I ruled out adequate pain relief at home, because the answer then becomes simple: the patient stays at home.
My interest with this one, is that when david (the Prof) and I ahve seemd to 'drift apart' during some very lengthy e-mail discussions in recent days, it seems to be because he concentrates on 'safeguarding/abuse' rather faster than I do - so, for this one, I would be very troubled by 'If I let my mum die in hospital, that wasn't what she wanted when she could tell us' - would clinicians, be more 'It amounts to abuse, to not move her to hospital' ?
If it turns out that David and I agree on this one, then I think we agree on everything ! But it has to be 'in pain but not able to 'think and communicate'' - your example, is easy: your patient was telling you she was accepting the pain. My question, was if I knew she was feeling ONLY pain, with no other cognition left ?
I think in this case the patient should be given pain relief and to be allowed to stay at home if that was there wish to do so
Thanks Debra,
I'm sure almost everyone would opt for good pain relief and staying at home.
But I wanted to explore perspective issues of 'patient safeguarding' versus 'patient's wishes' in the very complicated situation of 'we know this patient very strongly wanted to stay at home, but it turns out that we won't be able to relieve what looks like 'obvious significant pain' unless the patient is taken to hospital'. And we cannot just ask the patient for a decision, we have got to decide.
I do have this 'gut feeling', that more clinicians than relatives, would opt for 'the pain relief comes above the residencial preference previously expressed by the patient', but I am not sure.
Similarly, if I were the 'conflicted relative' who believed that my mum's desire to die at home had been so great that I simply wouldn't allow her to go to hospital, distressing as inadequate pain relief was for both my mum and me, would some visiting district nurses think I was 'cruel' ?
It is horrible to watch a dying loved-one in great pain - but as a relative, my guiding principle was always to 'do/support what my parent wanted'.
Mike