Is this care ok?

NightOwl756 · 2025-01-05T19:16:50+00:00

I hope I explain this well enough without being too outing. I have a close family member who has cancer that has spread to several places and is not curable. He was doing ok but had a sudden turn and has gone downhill fast. He has been in hospital a while now and has really deteriorated - severe weight loss, no energy, grey skin, sleepy, struggling to talk and be coherent, refusing to eat. The doctors come round and do their checks but we don't seem to getting full information & conversations about his care. For example, are they aware he is not eating because they're not mentioning it. He hasn't eaten in days. Do they let us know if he is near end of life? Do they discuss prognosis with us? Should these discussions be happening? We're not the next of kin but direct relations and the next of kin, his partner, isn't proactively asking for updates. It's like the blind leading the blind and upsetting the rest of the family because no one knows what's really happening and what to prepare for. Surely there should be sit down conversations with his partner and family about his care & prognosis? So we all know how we can help him, even if it just being positive around him to take away some of his worry.

P00hsticks · 05/01/2025 19:30

I'm sorry to hear this.

I can't say if it's the accepted and up to date position, but in my experience from a few years ago it was left up to the patient themself to ask about a prognosis and how they woudl be cared for - not everyone wants to be told directly that they are about to die and although a doctor would answer it honestly if asked they wouldn't necessarily volunteer the information.

They'll certainly be aware of what he is and isn't eating, and giving him fluids on a drip if he is dehydrated.

Does your family member have a Macmillan nurse team assigned ? they might be able to give some sort if general indication of what stage you relative is at and what level and type of palliative care should be expected.

Ihatelittlefriendsusan · 05/01/2025 19:33

Unless he is deemed to not have capacity then they cannot discuss it with anyone other than the patient.

They can only discuss with his next of kin with permission from him whilst ever he is deemed to have capacity.

They will be fully aware, if they are not taking measures then he may have a DNR or a no heroic measures ordernin place.

Original poster

NightOwl756 · 05/01/2025 19:42

P00hsticks · 05/01/2025 19:30

I'm sorry to hear this.

I can't say if it's the accepted and up to date position, but in my experience from a few years ago it was left up to the patient themself to ask about a prognosis and how they woudl be cared for - not everyone wants to be told directly that they are about to die and although a doctor would answer it honestly if asked they wouldn't necessarily volunteer the information.

They'll certainly be aware of what he is and isn't eating, and giving him fluids on a drip if he is dehydrated.

Does your family member have a Macmillan nurse team assigned ? they might be able to give some sort if general indication of what stage you relative is at and what level and type of palliative care should be expected.

Edited

We do know that he didn't want to know prognosis when he was diagnosed but would his family be told he is at end of life/his likelihood to get better and leave hospital as he is so unwell in hospital?

Will ask about the MacMillan team, thank you.

OP posts:

Original poster

NightOwl756 · 05/01/2025 19:43

Ihatelittlefriendsusan · 05/01/2025 19:33

Unless he is deemed to not have capacity then they cannot discuss it with anyone other than the patient.

They can only discuss with his next of kin with permission from him whilst ever he is deemed to have capacity.

They will be fully aware, if they are not taking measures then he may have a DNR or a no heroic measures ordernin place.

Thank you for your response. How do they deem him to not have capacity?

OP posts:

MusicalDoc · 05/01/2025 19:46

NightOwl756 · 05/01/2025 19:42

We do know that he didn't want to know prognosis when he was diagnosed but would his family be told he is at end of life/his likelihood to get better and leave hospital as he is so unwell in hospital?

Will ask about the MacMillan team, thank you.

Show quote history

No, they cannot share that information spontaneously. It’s up to the patient to tell their family. Doctors cannot give out medical information to family members that the patient does not know themselves. It would breach Doctor patient confidentiality.

i am sorry to hear about your relative and wish you all strength on the journey ahead

Ihatelittlefriendsusan · 05/01/2025 19:54

They will have assessments that they have to carry out. But as long as he is mentally aware of what is happening and deemed to have awareness and understanding of his situation theybwill only discuss with him unless he is gives consent.

If he has stated he doesn't want to know the prognosis then no, they will not under any circumstances tell anyone anything whilst he has capacity.

You are not entitled to have any information.

His next of kin will involved if he doesn't have capacity or becomes incapacitated by something like a coma. However. They have to act on what they believe his wishes to have been so if he didn't want to know then they could say they don't want to know or find out and not disclose to anyone else.

Original poster

NightOwl756 · 05/01/2025 20:00

Ihatelittlefriendsusan · 05/01/2025 19:54

They will have assessments that they have to carry out. But as long as he is mentally aware of what is happening and deemed to have awareness and understanding of his situation theybwill only discuss with him unless he is gives consent.

If he has stated he doesn't want to know the prognosis then no, they will not under any circumstances tell anyone anything whilst he has capacity.

You are not entitled to have any information.

His next of kin will involved if he doesn't have capacity or becomes incapacitated by something like a coma. However. They have to act on what they believe his wishes to have been so if he didn't want to know then they could say they don't want to know or find out and not disclose to anyone else.

Ok that's hard but at least it clears up our uncertainty and know where we stand. Thank you

OP posts:

Ihatelittlefriendsusan · 05/01/2025 20:10

It is a difficult situation but the hospital staff are tied by legal protocols around confidentiality.

I'm sorry you are going through it, but this is probably the last thing he has any control over. As hard as it is, try not to strip him of that. Let him die the way he wants to. And if that is ignorant of the timeliness then unfortunately you just have to accept that.