Can I not give consent for pneumonia vaccine for Dad with dementia?

[SinisterBumFacedCat]

My DF has a very horrible form of dementia. He has been in a care come for years. They have been asking me about the pneumonia vaccine. I have given consent for flu and Covid but I keep thinking of the Old Man’s Friend and that vaccination will remove the prospect of a relatively merciful death, compared to a drawn out painful one. I have no POA. His type of dementia has a relatively long life expectancy, he can barely talk now and struggles to swallow but faces years being paralysed, bedridden and peg fed. We never had the conversation before he got ill but I don’t think the old healthy version of my dad would be happy to live like this. Is it acceptable to refuse for him? The care home staff are lovely but seem happy for him to continue to the bitter end. Feel awful for asking this but there is no one I can turn to in real life!

I see your point - but doesn't that mean he could also pass it to others?

I had community acquired pneumonia in my twenties. It's not something the staff would enjoy going by my experience.

Yes that’s a good point. I have given consent to flu and Covid for this reason, he had Covid last year and recovered but it his condition did noticeably get worse after.

I know a family member refused it for her mum, in the same circumstances, and she's a hospice nurse! She had POA though.

My parents have just done an advanced directive and have gone the route of "slow medicine" ie specifying no interventions, including no flu or pneumonia vaccinations.

Of course its acceptable. I had a very honest discussion with my mums GP that we did things only for her immediate comfort and wellbeing - so her blood sugar needed to be controlled enough so she didn't feel bad day to day, but her food wasn't restricted in anyway. No statins and other long term drugss, and when she had swallowing problems I made it clear that a PEG would not be something that we'd consent to.
Its so hard to make these decisions, but I'm glad I was able to let my mum slip away gently

I’d only give my consent if the home really, really wants or needs this to be done. I wouldn’t condemn anyone to that ‘life’.

I have no POA but as his next of kin and deputy I still get asked. One of the carers told me how another resident had an advanced direct requesting not to be fed once he lost the ability to swallow but the home and family went against it as it was “too distressing” 😞

A family member of mine was in a home dementia and every time he had the slightest cough they put him on antibiotics. That prolonged his life to the extent he was a complete shell, it was horrible.

Seems a very reasonable thing to ask. Do you think the home would insist if you have no poa?
Could you ask to speak to his GP for a general discussion about not prolonging such poor quality of life?

Personally I would want antibiotics for a UTI but not a chest infection.

Legally you cannot consent for someone other than yourself. You can agree with a health care professional that something can be done for someone else if its in their best interests. This can be formalised with LPA but a best interests form can be completed without one, it will require a second opinion of a healthcare professional

During COVID his GP said hospital was wrong for him, that it would be too distressing to him and other patients and staff and that I should be prepared for him to die. Then he basically slept his way through it and recovered! But it has taken its toll.

My DM also has Alzheimer’s now but I have just managed to get POA for her and she is early/mid stage.

i have informed my DC’s that I am going straight to Switzerland first sign!

It seems now we have got passed the point where POA is relevant as far as home or GP are concerned, they just ask me now. It’s so much responsibility trying to guess what he would want. He was a very independent free spirit back in the day. I can’t guess. He had no input into his parents care so I can’t even judge it by that.

we refuse the flu jab every time for DM. She never wanted it when healthy so seven years down the line in the care home, we always refuse on her behalf. Nurse who calls is never pushy or insistent. Just accepts every one has right to choose.

I've just said I don't think my DM should have a Covid jab. I don't have LPA for health so it isn't my decision. However, they usually ask me now.

If you have LPA you can refuse treatment for someone else but you can't demand it- just like they couldn't for themselves.

I'll go out on a limb and say that very few people would genuinely want life prolonged in that situation. It is so bloody difficult to get clinicians to STOP treating without thought.

OK. There are 2 issues.

1. If there's no power of attorney, you can go to the court of protection and seek to be made his deputy. The court often withholds the health and welfare deputyship and assumes that role themselves however. As you say that the staff are discussing everything with you as next of kin, this doesn't sound necessary.

1. A doctor must decide whether your father has capacity to make this decision. Each decision will be assessed on a case by case basis, and capacity is regarded as decision specific. If the doctor decides that your father doesn't have capacity then they will discuss with next of kin what they feel is the best way forward - and it sounds like you're at this point?

In my experience, doctors are often quite realistic about whether something is 'the best thing'. So it would probably come down to a discussion about how your father might be impaired if he did catch pneumonia and survived (like you said he did with covid) with those further losses of quality of life balanced against perhaps continuing to prolong his life when he doesn't have significant quality of life any more.

Its not an easy decision and it's actually one which I've been entangled with for a while now. Only you will know how far your dad is now from what he was and what might be kindest.

I totally understand.. I'm going through the same thing with my mum. She's a shell a body being kept alive by interventions and I feel awful saying no. But, there is a DNR and they call me frequently about flu and covid vaccinations, eye treatments etc. it's baffling

What is peg.. because she's getting to the food refusal stage, and I thought that was end of life care from there on in?

Just say no, they will be fine about it.

also quite a few care homes are reporting that this round of covid boosters are really knocking elderly people for six for a few days which is a shame.

Is he already PEG fed?

@onmywayamarillo PEG is the name for a stomach feeding tube. It's a longterm version of the temporary nose feeding tubes that in the country mostly only happen in hospital.

There's clear evidence now that a PEG to feed a person with dementia doesn't actually prolong life. Eating/drinking less is part of the natural progression of the disease. PEG is useful where eg theres a structural problem with the mouth or throat, or in younger people with other diseases.

Thank you @PermanentTemporary
This thread has been quite reassuring that i'm not alone in this