Hi all.
One thing that we’re finding particularly stressful is whenever the palliative care team visit (usually once a fortnight), they insist on talking about my dad’s ’wishes for the future’.
He’s already stated that he would rather be at home or in a hospice, but they keep bringing it up, every single time. It really upsets my dad. Today they were saying “what about if you had a chest infection and needed IV antibiotics, would you really want to be bundled up and taken to hospital or would you rather be comfortable at home?” And because my dad feels intimidated by healthcare professionals, he tends to agree with them, even though afterwards he will say differently. I hate the leading way these questions are posed and the fact that it is one of the very few things that really distresses him. Whilst he’s is completely aware of his situation, he has always been a person who doesn’t dwell on negatives until something bad actually happens, and he has said this to them on more than one occasion - that he can’t really say whether he would want an ambulance called until he was in that position. And they always say “we don’t want to push you to talk about this” but they do, and then he ends up crying and then my mum cries. It’s degrading and depressing for him.
Is there any way we can ask them to stop this line of questioning?
Hi AM123
we had our first visit about 10 days ago from the local palliative nurse and I have to say she was great with my husband who can be very difficult. She discussed his wishes with him (Hospice or home or hospital) , DNR etc. It was an uncomfortable conversation but she when she was concluding it, she did say that that was everything in order and she wouldn't need to ask these questions again. She also left us the scary "just in case" box which is now stocked with some very scary drugs "just in case".
If you feel your dad's team are stressing him by asking the questions every time, you need to tell them that. I'm sure they think they are acting with the best intentions and don't mean to cause any undue stress or distress. Perhaps they are still missing answers that they need to put the best palliative care plan in place.
We also had a visit from the local hospice nurse. It was basically an introductory visit and to reassure us that they would be there when the time comes. She referenced the chat we had had with the palliative care nurse and it was a relief not to have to go over is all again so soon. She too had obvious been warned my husband can be a challenge as she chose her words very carefully.
When she left, my daughter who had sat in on the visit and is a mental health nurse herself, said "I'm glad I don't have her job. These conversations are so hard to have."
At the end of the day, the palliative team are just trying to do their job and do the best thing for everyone.
If you feel you can't talk to them direct then perhaps a call into the GP might be appropriate as they all seem to work closely with each other. Just a thought.
Please also remember the MacMillan Helpline is there to offer support too. The number is below.
For now I'm sending you a huge virtual hug. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
