If you have a relative with severe dementia.....

[Stonehengecalling]

If they are ill, why do you want them treated to prolong their life?

I’m a HCP who deals with dementia daily. In 20 years I’ve only had 2 families that have asked me not to treat their dementia suffering relative, which has resulted in a speedy death. Everybody else wants me to treat their mute, bed bound, incontinent, peg fed relative to keep them alive a bit longer. I don’t understand why.
I’m going to apologise now as I appreciate this post my upset some people, and that truly isn’t my intention. I’d also like to be absolutely clear that I’ve always followed family requests. I just genuinely don’t understand why some families are intent on keeping relatives who recognise no-one and with no apparent quality of life left alive with repeat courses of antibiotics?

Thanks it wasn't just me, it was my dad and sister too. But it took over the whole family. It was like having a baby when every decision, even a short trip out, takes an immense amount of planning. And that was before things got really bad. It's such a horrible disease. It took over mum so quickly and in ways that we weren't prepared for. She couldn't understand any language. So she couldn't understand us, or any instructions. This was before the huge physical decline. It all happened so quickly. I'm still quite traumatized by it all.

Candleabra so sorry to read your post. You sound like an amazing daughter, and your mum is obviously a very special person as you post about her with such love. I wonder how many people know about the situation with dementia & funding as a social care need - not enough I think, I sure most people would be outraged if they understood the terrible pressures placed on the families of those with dementia.

Goodness you have an unusual practice. As an icu dr I simply don’t offer cpr in some circumstances as it entirely unethical to offer futile treatment.

I certainly do not do ‘one round’ of cpr for the sake of relatives.

My experience has also been that implying it’s a family decision (it is in fact entirely a medical decision) to offer cpr makes families feel like they are ‘killing’ their relative.

ConiferGate one thing to remember, it's never too early to talk about something, but there is always a time that it's too late to talk. I'm in Ireland so don't know how it works elsewhere but certainly here, your district nurse should do a carers assessment on you. The GP can send a referral to the palliative care nurses. They usually are involved in complex or uncontrolled symptoms but they would certainly be able to help you. Here every palliative patient 'should' have a key worker who acts as patient and family advocate and liaison.

One question I find helpful to ask families is 'have you been with anyone when they died before? Have you experience of someone dying with a long illness? Because the answer usually exposes the fear of the unknown and that again is when education is key. When people have a rough idea of what to expect and what can be done, it can lower their fear and anxiety. When you are knowledge about something, you have an element of power. The when is a difficult one and one everyone askes. It's almost impossible to answer, untiln very close. Unfortunately with dementia the patient can be quite stable for a while then pass suddenly and this can be a big shock to families, even when they know ultimately what is coming.

Thank you for starting this, it is something that is playing on my mind at the moment. I have LPA for a relative who is late 80s, she has dementia, she sees horrible things, she is desperately unhappy as she wants her dead husband/mother/father to visit, she is long past understanding they are dead, she wants to go home so her mummy can look after her. She can talk and eat to some extent but her life is so miserable, the home she is in is wonderful but sometimes I think they are so wonderful that she has survived longer than nature intended.

At the moment she is losing weight and is sleeping alot, refusing most food and fluids. Home spoke to me about their concerns and doctor is doing some blood tests to "see what is going on." They are talking about her having some high protein drinks to try and keep her weight up. My instinct was to say, "let nature take it's course, don't interfere" but I feel the suggestion wouldn't be viewed well, might even be suggesting something illegal. I have already signed the DNR.

What do you think I should do? I am struggling.

@ancientgran up here, we have Alzheimer Scotland. I'm assuming all nations of the UK have similar ie Alzheimer England etc. They are a great source of support, could you maybe look them up and give them a call tomorrow?

@ancientgran

www.alzheimers.org.uk/

I think if she is refusing fluids and food, she will also refuse high calorie drinks. Just have an open and honest discussion, please dont be afraid too and and let anyone judge you.

One question I find helpful to ask families is 'have you been with anyone when they died before? Have you experience of someone dying with a long illness? Because the answer usually exposes the fear of the unknown and that again is when education is key. When people have a rough idea of what to expect and what can be done, it can lower their fear and anxiety. When you are knowledge about something, you have an element of power. The when is a difficult one and one everyone askes. It's almost impossible to answer, untiln very close. Unfortunately with dementia the patient can be quite stable for a while then pass suddenly and this can be a big shock to families, even when they know ultimately what is coming

I just wanted to highlight this, it really sums up and answers so many of the things we have talked about. Thank you @ButiLoveHim32

@ancientgran
They are talking about her having some high protein drinks to try and keep her weight up.
This is the position my mum is in. We weren't consulted about the drinks, they were prescribed by the GP on the recommendation of the care home. Mum is now under 6 stone and takes very little solid food. So this is what I meant earlier about it sometimes not being a simple choice of prolonging life or not. Often you don't know you're at that crossroad until afterwards.
I can look back now and wish she hadn't been prescribed those drinks, because they've may have extended her life in some way. But now they can't be withdrawn (well not on my say so anyway). It seems a simple thing, but nutrition in dementia patients is really difficult to manage.

@AwaAnBileYerHeid and @ButiLoveHim32 Thank you both. I do feel she will refuse the drinks, will the next thing be hospital and drips? I would fight that, she was in hospital in January after a fall and it was horrific, she didn't understand what was happening, kept pulling IVs out and trying to pull out a urinary catheter (is that what it is called, if I've got it wrong I'm sure you know what I mean) To see this woman who was very prim and proper lying with legs akimbo trying to remove the catheter was one of the most tragic things.

Since the start of her illness it has been hard to get support, everyone from the carers who came into her home, the SocialWorkers and the Consultants have all said she has atypical presentation so it has all been very confusing.

I am already my husband's carer and the last 6 years have been awful as she got so nasty and sometimes violent. She really isn't the person I grew up knowing, she is a shell. Of course all the worse this year.

@Candleabra it is awful isn't it. I think the GP is going to prescribe the drinks once he gets the blood tests back, or that is what he's thinking. I can't see her at the moment, well haven't for months as I am 200 miles away and lockdown, covid in her home, local council saying no visits. Every time I think I can go it is stopped again. No one's fault just how it is.

She has been in the home for 4 years, she wasn't eating at home and was just over 6 stone, they got her eating and more involved and she had a good period but now she is going down again. I feel responsible so did the best I could and now I feel guilty as I feel all I have achieved is to prolong her misery.

God I'm feeling low.

@candleabra I had a very similar experience to you. Mum cared for at home until we were all too broken to cope anymore. She’d stopped eating and drinking.

Her pacemaker still paced. The care home dribbled fortified drinks and fluids in with spills and coughs to accompany it.

I did not experience any of this palliative care or discussion described here. We watched her death be drawn out and slow.

The end of life drugs stayed firmly locked up. Why? I assume people felt this would hasten death. Instead they prolonged it. It was utterly traumatising. I’m quite upset by the posts from people claiming to be palliative care specialists and claiming their description of care happens. It doesn’t. Not in dementia.

I was in this position earlier this year. Elderly DM in her 90s with dementia had a stroke. She was hospitalised & I was asked if I wanted her to be treated & I said no. Her quality of life post stroke would have been dreadful & I wouldn’t wish that on anyone.
She passed away peacefully a week later. It wasn’t an easy decision & immediately after her death I wondered if I should have fought harder to keep her alive but that was because I was grief stricken. The best decision was to let her slip quietly away.

My experience of palliative care in dementia made me determined to take my own life before I lost the ability to do so and was left in the care of people who prolong the suffering believing it was the right thing to do.

@ancientgran You've done your best. Which is all you can do. It's the illness that makes it so hard, which is not your fault.
I also think that the HCP's could be more realistic and straightforward in they way they talk to you. I've found that (particularly in the care home) they skirt around the issue, where a bit of straight talking would help.
Earlier in the year, it was all sugar coated euphemisms such as 'poorly', then 'very poorly' 'struggling a bit' 'not doing as well as she was..'
I genuinely didn't know how bad it was. Poorly, to me, is a bit of a cold.

@Candleabra
I also think that the HCP's could be more realistic and straightforward in they way they talk to you.

I think my OP and some of the subsequent responses would indicate that a certain subset of the population really don’t want straight talking. Some are even convinced that because of my straight talking I couldn’t possibly be a dr!

TooOldForBouncyCastles your post is just horrific, and I can't begin to imagine how horrendous that was and the feelings that must leave behind. I am at a complete loss as to why the supposed professionals charged with looking after her would be so cruel. It's simply poor poor care and unacceptable. To be quite honest, I would describe it as abusive to withhold much needed medications. I mean there are very easily to follow guidelines about tlswitching off ICDs/pacemakers.I work for a charity, not a health Trust but the same rules apply. Have any issues/complaints been raised? Anyone been held accountable for this? I'm sure that will take you along time to get over. I'm so angry on your behalf.

OP I don't think you sound uncaring or unprofessional in anyway. On the contrary I think you sound like the kind of doctor I'd like treating me if I was in that position.

Some are even convinced that because of my straight talking I couldn’t possibly be a dr No, I'm not convinced your a doctor purely because you seem to have no knowledge or grasp of human psychology and what families think or feel when going through a traumatic time and crisis admission.

@stonehengecalling it must be very hard to get the balance right, not least because of the unpredictability of the illness itself. I'm sure it's hard for the care home staff to be objective as they also care about the residents. And there's an element of normalacy about their condition so that's their benchmark, rather than the person as a fully functional individual.
I don't know what the answer is, and a lot of my thoughts/regrets are with the benefit of hindsight. You can only do your best with the information you have at the time.

I qualified as a nurse in 1993. I worked in care homes all my adult life. I had to leave nursing last winter because of how palliative care people are treated. The last straw was the death of an MS client. The suffering that was caused was immense and, despite my very vocal objections, nothing was done. They - the GPs - literally saw to it that every last breath was drawn out of that individual and I had to stand by and not only watch, but actively participate. It finished me. I trained to be a nurse to relieve pain and suffering, not torture the dying. I loved my job, but society has gone too far in its rejection of death and people are suffering.

The same treatment goes on in elderly and dementia care. 95 year olds, lying mummified in their beds, in pain and aspirating their liquidised food so they get chest infection after chest infection. GPs happily prescribing dozens of antibiotics to keep them going.

The hospital doctor was appalled when I suggested that they stop conducting invasive investigations on MIL and return her to the care home on a syringe driver. Eventually dh spoke to the Consultant and he agreed and she died a week later.

I've been doing palliative care for 30 years, I have a ton of experience (personal and professional), knowledge, you name it. I have never seen pain medication and sedation withheld before, the way it is now. I'm beyond disgusted and I fear for the future.

Medicine and nursing is nothing more than an arse covering exercise now.

My grandad had a stroke 20 years ago, and since then he has had what has been called dementia, but it was more like side effects of the stroke. Like, he knew what he wanted to say, but couldn't articulate it, and this made him very frustrated. At the time of the stroke he was still physically able to be out and about - accompanied but unaided - which made a huge difference, but as he got older, this changed, and he was basically housebound with carers, unable to dress or feed himself.

He developed an infection a short time before he died, and was hospitalised for it. My grandma was adamant that he was treated for it, because she was terrified of losing him.

She is 20 years younger than him, and the past two decades of her life had been spent being his carer rather than his partner .. but I think she was scared of losing him because her life would be so empty, and even though he was the way he was, there were 'VERY' rare times where there would be a short flash of normality, and he would remember something or say something that actually made sense (possibly just a fluke).

He wasn't eating in hospital, and wouldn't accept being fed, and they discussed what the kindest thing would be, and my grandma insisted he was tube fed as that was the only chance he had.

My grandad used his last remaining strength to fight off the tube, and said 'no. enough now' in the most decisive tone he'd used in 20 years.

They agreed it wasn't in his best interests to push for this, and he died the next morning at the age of 96.

What I'm saying is that it might be so, so obvious that someone has no quality of life left, but there is still the memory of who they were, and some loved ones want to cling onto this, and do so by doing everything in their power to keep the body alive - even if it is only a shell of the person they knew and loved.

We all agree that my grandad needed to go - particularly given the way things are this year, we're so, so glad he didn't survive to 2020 as he wouldn't have been allowed visitors, which would have been heartbreaking.

daisycottage I would tend to agree with you there on GPs. We are lucky in the sense we has specific palliative consultants that take over care, even for residents in a nursing home, therefore we really don't need a gp for much. I know I'm in a wee corner of Ireland but have been doing some more research this morning after reading this thread and the differences in standards of care in some places is shocking and quite an unwelcome eye opener. It appears some health are professionals have never heard of GSF, let alone think it applys to them!

Not dementia but a similar quality of life. It was hard to decide when to and not to treat. We all agreed we didn’t want life saving treatment but equally didn’t want to sit back and let things get to the life threatening point. When it was the end I wished there was an option to speed things up rather than what they did - withdrawing fluid and nutrition even though we had said we didn’t want that (My grandpa said so but wouldn’t let us raise it). I wish euthanasia was legal here. My other grand mother had dementia, we treated things with antibiotics in the care home but wouldn’t have her admitted or a peg, when the end came we were glad and my family sat with her in her care home listening to music and her passing peacefully. No regrets over not treating. It is so hard though when you’ve treated before so what’s different this time and you just want them for a tiny bit longer. I do think we treat too much on a whole though