Could we have an AMA on emergency care decisions for frail elderly patients?

[Mixymaxymoxy]

Can I request an AMA on here? I would love a paramedic / a&e doctor / care home doctor to talk frankly about how medical emergencies in frail, elderly, demented patients are dealt with in practice. There is frequent discussion on the Elderly Parents Board about how to prevent the pointless extension of life for people who have no quality of life and are living horrible lives with incurable, age-related conditions. But in the heat of the moment, these decisions are made by medical professionals - not family members. I’d love to know how much notice is taken of DNRs, living wills and other formal medical directives, and what families can do to ensure that decisions are made in the best interest of their loved ones.

Not sure if this is how to request an AMA - happy to be redirected!

Can't help with an AMA but I can recommend a couple of brilliant books on this topic- With the End in Mind by Kathryn Mannix and The Book about Getting Older by Lucy Pollock.

@BoldBeans do those books actually cover it?

I know someone whose mum was in a care home and the DNR was ignored so they broke her ribs. She’d been in there a few years and was desperately waiting to die.

Their defence was that they couldn’t get their hands on the document.

This is what it would be so useful to know, as a family member - what actually happens in practice and what priorities do the medics have in these situations?

i know there are ways to write these wishes down, and both my parents (who are in their 80s) have told me verbally they wouldn’t want to end up being kept alive with no quality of life. But I don’t know how that wish / desire / decision is passed onto and taken account of by the medics.

I read Rachel Clark’s Dear Life and the impression I got was that most doctors / medics / medical students do not talk about or learn about death as such - only learning ways of keeping people alive, at all costs.

I am not a paramedic but have some knowledge and this is a bit of a passion area of mine.

Ask if the ReSPECT process is followed in your area https://www.resus.org.uk/respect

If it is then your elderly frail relative probably has one already. Please ask, and if there is one make sure it’s findable and reflects the current situation (ie not 3 years old and missing half the medical conditions). If they have several please consider just keeping the newest (or best) one!

If they aren’t a thing in your area you can have a good look at how it works and a discussion about what it might mean for your relative, so when you are asked you know what to say.

ReSPECT is specifically designed to record someone’s wishes for emergency treatment, including hospital decisions and balance of care (comfort vs life extending). We use them all the time. DNACPR is the least important bit of it - frankly, for most elderly frail people an ATTEMPT at resuscitation is going to be futile anyway and paramedics have more power to not start a resuscitation where there is a very strong likelihood of no meaningful benefit to the person.

Copies of ReSPECT forms are lodged with ambulance services and nowadays can be retrieved electronically; paramedics have much wider leeway to act on them than they used to.

These are brilliantly helpful for people who don’t have capacity (dementia, nasty uti) or where we can’t get hold of someone with POA immediately.

So the sort of things you need to think hard about are “if mum had an infection and oral antibiotics didn’t work then would I want her to go to hospital or would I want her to take her chances at home?” For someone with advanced dementia a hospital stay can be hugely detrimental.

I am not a medical professional but have been through this with a parent recently.

My dad was diagnosed with dementia in march 2020 and he and my mum were left to get on with it as the NHS totally pivoted to dealing with Covid and only Covid. He dealt (well mum did) only with the GP and a mental health nurse over the phone, there were no in-person visits. No DNR or discussion of care needs.

In May 2024 dad fell at home and broke his hip. He was admitted to A&E at their local hospital. By this stage of his dementia he was very confused and shouty, we were getting to the stage of considering more formal care. A&E doctors diagnosed the broken hip and said he would have surgery the next day - there was no choice and discussion over this. They waited until I had arrived (I live 2 hours from them) to discuss DNR as they clearly didn't want to have that discussion with mum on her own. We agreed that DNR was the best option.

Surgery went well so the DNR was not needed. However, the dementia meant that he could not engage with physio or do the exercises needed for mobility. He spent about 4 weeks in a hospital bed, fell more than once trying to get out of bed as he'd forgotten he'd broken a hip, repeated infections from his catheter. Eventually got sepsis and became very unwell. Mum was called to hospital right away, I got there as quickly as I could late on a Friday night. Again we had a conversation with the nursing team about DNR. By the Saturday evening he had been moved onto palliative care and we had another long discussion with the palliative care consultant about what this meant and how things would progress.

What we found was that it was often difficult to get people to speak to, the medics were very busy and we were told doctors would come and speak to us and never did. Sister and I were better at being stroppy and demanding and insisting we spoke to someone than mum, who was very passive. But we did feel fully involved in the serious decisions, even though it was clear what the medical position was.

We refused to let my very elderly mother be taken to hospital when she had her final stroke. I was asked if I had PoA, which I didn’t, but then we remembered she had a DNR registered at the GPs. We had to phone them and they confirmed this with the paramedics. They washed and changed my mother and put her to bed and then the GP arranged for district nurses to call, prescribed a bag of End of Life Medication and put us in touch with the local hospice. The end result was that my mother spent the last week of her life at home with her family nursing her aided by carers and nurses. Above all there was no intervention to prolong her life and everyone who wanted to could visit her and sit with her. She had a peaceful and calm death with her family holding her hands.

Thank you for sharing your story.

So it started with your mum having a stroke at home, someone called the paramedics, they came and you were there to intervene? And having the DNR in place was enough ‘proof’ that she should be made comfortable at home, rather than taken to hospital (even though it presumably wasn’t a resuscitation situation ?)? And you, the GP and the paramedics (and maybe your mum too) were able to have a conversation and agree that this was the correct way forward?

Did you feel any resistance from the GP or the paramedics to this course of action?

@Mixymaxymoxy my dad completed a form with his GP with his thoughts and wishes

And did you have cause to use it in practice yet? I know that there are various ways to set out one’s wishes - I would like to know more about how medical / care staff react in the moment, especially if family are not present and the elderly person isn’t able to make their wishes felt.

If your dad had eg a heart attack and an ambulance was called, would the emergency responders have any way to know what his wishes were?

@Mixymaxymoxy the form is with his medication list in his hospital bag so I'm assuming (hoping) they would find it

When my father was at home, I kept his care plan, DNR, and PoAs in a file by the front door. It came with us whenever we left the house, even if we just went out for a walk and a cuppa at the cafe.

When he was no longer able to stay at home, the DNR was replaced by a Respect form which was filled out during a meeting with me and my sister and medical staff at the nursing home. No CPR, no artificial life support, yes to pain relief and antibiotics.

The nursing staff explained that dying from sepsis can be slow and painful in the aged as they have slow metabolism. Antibiotics would, in theory, prevent a long, agonising death. The over arching directive was to be made comfortable and pain free. As it turned out, he slipped away in his bed.

We had spoken as a family about wishes when he still had capacity. It's an important, but difficult conversation. The trauma of COR should be discussed. Broken ribs and punctured lungs are a probable outcome of CPR. No one wants that.

@Rocknrollstar I honestly didn't think that was an option

I would be really worried about not having her go to hospital in case I got into trouble

And realistically, I couldn't look after her because it would take ages to get care in place.

My mum has had some terrible experiences in hospital and she would rather I didn't ring 999 if there's another incident but realistically, the last time she tried to stop me, she couldn't sit up in bed without being dizzy. So how could I look after her? I think what I would have to ask for if it happens again is a step down bed.

But it's been a struggle just to find out that information and I didn't find it out from an official source - so it may not be an option anyway.

also a DNR is a separate document from a "do not treat".

she will always say that she doesn't want anything, while simultaneously taking all the pills and having all the vaccines, so I'm pretty sure if she was in hospital and got pneumonia or something she would want to be treated. Even if she says no, I think if it actually happens, you're just focused on feeling better. I have never understood why pneumonia was called old man's friend because when she and I have had it, we both felt terrible.

A DNR just means they will not start resuscitation if someone's heart has stopped and breathing has stopped. They will still get offered all other appropriate treatment.

BUT

Providers have to act in the patient's best interests. And that has to be informed by the patient's wishes and the likelihood of meaningful benefit. And the ambulance service is not in the business of kidnapping people and taking them to hospital. They are very happy to look at other options so someone can stay at home (like the local urgent care team or an out of hours GP visit) and will often spend ages on scene trying to sort out what's right for the patient. But they can only take someone to A&E - they can't take them to respite or a nursing home.

A&E dr of many years here so deal with this situation almost daily

if theres no respect form the paramedics will have a lot of difficulty leaving the patient at home unless they still have capacity. If your relative wouldn’t wish to be treated in hospital your best bet is to get this formalised into a respect form with the GP. You can write stuff like not for admission to hospital, only admit for antibiotics / fluid, not for ventilation etc etc
Also there is a box for whether the person would like CPR to be attempted if needed. You can still have a respect form that states that you would like CPR.
The form isn’t perfect but it’s a lot better than the old style DNACPR forms. It has also just gone online which gets rid of some of the issues of what to do if the form can’t be located at the house.
The ambulance crew may be able to access the GP notes and form depending on where you live, it is in the early stages of rollout in my area. Otherwise just make sure they keep it somewhere obvious (often with the cereal boxes for some reason according to the paramedics I know 😂)

Even without a respect form, doctors at the hospital will make a decision on how to treat. For me (and I think most people) this is based on what I would want if it was my own relative in the situation. We do try to work with the family though and if we can we go along with their wishes. We often have to backtrack if they’ve got a lot of misconceptions of just how successful CPR and other treatments can be, if it is obvious it is not going to be of benefit in their particular situation. We will treat if we can but we are not miracle workers and the media often doesn’t really reflect that (lots of successful resuscitations in tv dramas!).
For me personally, I would be much more concerned about getting financial POA in place in case your relative becomes incapacitated and is unable to express their own wishes. It is a much bigger concern if they suddenly need to go into care.
Happy to try to answer questions (but not a full AMA!!)

@Namechangedforspooky thank you

What would you recommend for someone like my mum? She’d have to go into hospital if there’s another incident, because I can’t patch together care for her any other way. She wouldn’t want to go into hospital. But then I suspect she wouldn’t turn down any treatment that makes her feel better.

It’s so complicated. I don’t think she can really do any more than the DNR that she’s already organised. (Her GP was very unhappy about her wanting to do it as well, that’s another thing I don’t understand).

It’s quite difficult to advise without knowing lots of specifics such as whether your mum has capacity, age and what the respect form says.

In terms of getting a form there is much more of a push now for people to get them now while they are able to make decisions. All care home residents should have one for example, not because we don’t resuscitate any of them but so that we can understand what each person needs individually and hopefully prevent unnecessary trips to hospital.

So I guess what I’m saying is the respect form should be enough if it is written carefully. We will read it.

incidentally, if a patient has capacity and they have a respect form which says not for hospital admission, if they change their mind and call an ambulance they will be brought into hospital still. It’s not a completely black and white document

@Namechangedforspooky thank you
She doesn’t have the respect form

She did the DNR and spends all her time moaning that she’s not dead yet.

I did think about the respect form, but the reality is, if there’s another incident,she has to go to hospital - at least until I can sort out home care -or care home.

It’s been going on for so long I can’t face having a conversation with her about doing a respect form. she did her DNR about eight years ago.