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?

My great grandma died over 10 years ago with dementia. She was 94. In the end I don't know what killed her in that she got ill and my grandma and mam /rest of family decided to just let her stay in the home and be comfortable. Rather than go to hospital. A doctor did come several times and she wasn't conscious or in pain.

So not everyone chooses treatment. It was the right thing to for her. It was actually during the last pandemic and I was ill so didn't get to see her. But having seen another dying relative I know it's not nice.

I also have had recent experience of this situation with both a parent & inlaw (both much loved). Whilst I don’t disagree that it is unfair to prolong the life of our loved ones in these scenarios I am also confused by some of the OPs comments, which are so far removed from my own experience with those caring for my relatives it makes wonder if the OPs role in a hospital setting is a factor here. Our elderly are increasingly dying outside of hospitals (nursing homes/hospices/at home) where there may be less emphasis on prolonging life at any cost.

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?
Really? It doesn’t take a lot of empathy or kindness to understand how gut wrenchingly hard it is to make dispassionate decisions about the lives and deaths of our loved ones. Relatives do not have the experience or the distance to evaluate the best course of action in the way a HCP would & often do not understand the implications of treatment / no treatment - which is why medical doctors and not family & friends make these decisions in my experience

I don’t know any colleagues who would refuse to give antibiotics and fluids.
Both of my relatives were not treated with antibiotics or given IV fluids as part of their palliative care plan. I have some experience of palliative care as part of my own working role and would say this is standard.

Genuine question- who’s responsibility is it if the patient doesn’t have an advance directive?
It has to be the HCPs responsibility in my opinion - we depend on HCPs to make decisions in our best interest based on their knowledge & experience. However HCPs do have a fundamental responsibility to be an advocate for each & every one of their patients. That’s a tall order, and means genuinely considering every option for every patient & making considered decisions as a result. That was not always done by the HCPs caring for either of my relatives, and I suspect that is too often the case. As a result families & friends feel they have to take the responsibility of advocate & and it is then that they have to question treatment options for their loved ones.

I forgot! Two coronavirus instigated discussions...which were along the lines of neither of your relatives meet criteria for ventilation-accept this notice of no intention to treat. Put kinder than that, but essentially that.
I agreed with that decision but lacked confidence in the care that is given to decision making during the pandemic. It feels a little impersonal, block decision making rather than as an individual etc.

As one relative died during the pandemic and another is about to, it is all a moot point

An aunt of mine, in her mid 80s with fairly advanced but not very late stage dementia, had recurrent UTIs (she’d always been prone to them) and it always took the very good care home staff several weeks to get her back to anything like normal.

She was childless, and when the last occurred - she was refusing food and drink - I was asked by the CH staff whether I wanted her taken to hospital for drips, or kept where she was, where they’d keep her comfortable, but where she would certainly die.

It was a horrible decision to have to make, and all the rest of the family were away or otherwise out of contact.

I could only ask her GP what he’d do if it were his own, much loved aunt.

He said that since it was only going to happen again, probably quite soon, he’d keep her where she was, where they’d keep her comfortable.

I sat with her a lot during her last days. She was mostly sleeping and did not seem to be in any discomfort. Staff continued to offer food and drink but she’d close her mouth and turn her head away.

She drifted off quite peacefully after about a week.
Although it was a horrible decision to have to make, I never once regretted it afterwards - I’m sure it’s what she’d have wanted - if her former self could have been asked.

From personal experience (mother in hospital with bad dementia and a broken hip) hospital is a terrible place for anyone with dementia. They are unable to understand what is going on or why, typically find it all very distressing, and are all to apt to pull any drips or catheters out (my FiL with dementia repeatedly pulled a catheter out).

OP I agree with you, and I'm fine with the language you've used. My mother has severe dementia and is in a care home. She is doubly incontinent, very frail, she has no memory of her previous life or of her loved ones. She isn't living, she's existing. This has gone on for years and could go on for years more.

She has had a DNaR in place for some time. But my fear is that she will end up in hospital and be 'over treated' as you have described in your earlier posts. I don't want that for her.

@NeedToKnow101 thank you, so many of us feel this way. It also seems to be that HCPs feel the same way as us, but too often we are made to feel like we have to prove something to people who have no personal or professional experience, to somehow defend ourselves and what we believe in our hearts and minds to be right for those dearest to us.

It makes me so sad to hear you say I was actually painted to be very uncaring about my mum because I didn't 'fight' to keep her alive

Please know that those who understand, know that this is not true. And those who do not understand will realise it quickly when it happens to them. And when it does happen to them, they will remember how you felt and in turn how they felt about what you had to do. They will realise you were not uncaring, you were brave and compassionate. That it’s ok to feel differently to other people.

Whilst I can’t speak for other illnesses, it takes a great deal of bravery and compassion to support a loved one through dementia. It is these experiences which bring us together as humans, but for those without the experience (or those going through it for the first time) it is impossible to understand. Your duty was to your loved one, if that’s what guided you then you did the right thing. to you.

@Stonehengecalling if it's true that you've only ever had two families ask for treatment to be withdrawn, and you're the person who decides whether CPR is given, I would suggest that you're not asking the families the right questions.

You seem to be waiting for them to make a decision without letting them know that it's one that they're able to make, and which will be received non judgementally.

In my experience with three loved ones, the subject has been gently raised by the doctors caring for them, and they've made it easy for me and other family members to express our wishes (or what we thought would be our sick relative's wishes) for them to go gently.

I can only suggest that this almost unbelievably low number that you mentioned (fewer decisions than I as one person have made) is down to your failings to communicate with the families.

There is a lot of research available online these days that can help them to make decisions. E.g. research into the negative impact of hospital on the elderly.

Re: antibiotics- pneumonia used to be called 'old man's friend' as it helped avoid a prolonged period of suffering. Not it's treated with antibiotics even in the extremely frail and elderly, prolonging extreme suffering in some cases (not every case, obviously).

Absolutely no way are you a Dr OP. I don't care what you say! And I think it's obvious other HCP on this post can see it too.

There are a wealth of reasons family demand treatment that will prolong the life of their relatives. And I know them because I have been taught them and studied the psychology around them. And the reason I've done that is because I am a highly trained palliative care specialist. It is a basic function of my role to understand these things.

If any of what you are saying is true, then the fault lies with the medical staff. It is clearly very poor communication. It is a skill to carefully discuss with relatives ceilings of care, advance care planning, dnacpr. They clearly aren't doing it very well. I have had countless families begging for treatment but part of my job, as well as being there for the family, is to advocate for the patient. And excellent and compassionate communication skills are vital to ensure this happens. But, at the end of the day a decision about DNACRP will always be a medical decision. And a doctor has seriously missed some vital classes in medical school if they don't understand that or if they do the opposite just to make relatives feel better.

The main standout features of palliative care is that we neither prolong life nor hasten death. And that's how I know your not a doctor. No one I have ever worked with in palliative care would ever speak of a 'speedy death'

@ButiLoveHim32 I’m glad you’re here, it’s reassuring to hear your input. In your experience, and I know everyone is different, but I have a question (happy to discuss offline if better). Is there a point at which the line between supportive care (feeding, drinking) and medical care (antibiotics, IV) becomes blurred? How do you cope with this and how do you help families cope with seeing their loved ones in this awful state often for months or years?

Also, just to add I don’t think DNACPR is the key point in question here, that’s something I think most people recognise is a medical decision and removed from other interventions. I appreciate your post wasn’t focused on that but don’t want it to become the issue of contention over and above the bigger conversation.

ReSPECT forms are far used much more than previously in the hospital I work in and are very helpful for everyone. Particularly when they are completed well by a caring communicative doctor with the patient and family.

www.resus.org.uk/respect

Good morning, OP
I remain sceptical of your experience. My professional and personal experience is entirely valid and gives me an understanding you lack. You are spreading hurtful untruths and ones that potentially put you in breach of the National guidance.

The bit about revalidation applies to GPs and consultants or specialist registrars only. If you are a doctor, you are a trainee and a pretty junior one.

Why do I think you’re peddling popularise nut I’ll informed views?

HCP I decide if they get CPR. We always discuss a ‘treatment escalation plan’ (TEP) with the family.
Whilst it is a clinical decision, it is only about management should their heart or breathing stop. It is decided in discussions but always signed off by a consultant within 24/48 hours. It is not a unilateral decision but a multidisciplinary one. You talk about it like some maverick sweeping in. It is based on futility and quality of life is not yours to judge regardless of your God Complex.

I don’t know any colleagues who would refuse to give antibiotics and fluids.. Assuming you are making DNACPR decisions in an emergency setting (since you fail to mention MDT, capacity assessment or best interest discussions) then of course you’d treat with at least fluid and antibiotics, if indicated because delirium (as I’m sure you know) can be caused or exacerbated by dehydration, Infection, Charles Bonnet and a myriad of other things. It would also be pretty unkind and unethical not to treat conditions that were symptomatic.

If family members are insistent that we do CPR then we will usually do one round and then stop, just to keep the peace, rather than point blank refuse. Absolute nonsense. Either you as an MDT decide a DNACPR is appropriate and uphold it, or it isn’t appropriate when resuscitation is attempted properly and fully. The crash team would not accept otherwise and behaving that way puts a trust at huge risk of prosecution under the HSCA 2008 or significant costs under NHS Resolution. To ask a multidisciplinary team to act in that way would be asking them to breach their professional codes and shows a huge lack of respect for your patient and the other staff. Invidious lack of integrity. Are you suggesting you work in a Special Measures Trust?

Most families agree for no CPR once the survival rates are explained and the fact that their relative wouldn’t get an ITU bed (you need to live a reasonably independent life and be in good health to qualify for an ITU bed). . This again is rubbish. I’ve seen a 100 year old in critical care following a NOF.

An example criteria that is in line with the FICM guidance might be -
Patients are admitted to critical care areas for advanced life support and monitoring, during active treatment of an underlying clinical condition. The clinical condition which has resulted in the patient needing critical care should be identifiable, acute and potentially reversible

Admission for critical care is only appropriate if the patient can be reasonably expected to survive.

Even when there is an acute reversible component, the patient’s chronic health status (impairment of organ systems or physiological reserve) may significantly affect the patient’s ability to survive and benefit from an intensive care episode. This requires careful assessment, but should not be prejudiced by age or ethnicity.

Reread that last sentence, perhaps. A virtually moribund person with end stage dementia whose physiological condition has been stabilised, would be given rapid assessment and discharged to a more appropriate setting paid for by CCF. Acute hospital flow is poor enough without people being left languishing in a noisy, frightening clinical setting in their final days or weeks. I don’t know any trust which does not discharge patients who are medically fit. It is a different argument about the quality of provision in the community.

I have colleagues who think it’s ethically wrong NOT to give antibiotics and fluids. I feel that it’s ethically wrong in every sense to give them. A person who has lost all their faculties and dignity

I’m saddened but it is you that is robbing people of their dignity. You are judging quality of life without authority to do so. Your comments are entirely unethical. If a person at any stage of dementia has a very uncomfortable urinary tract infection or infected wound, they need to be offered symptom control, which is likely antibiotics. You are suggesting supporting an uncomfortable euthanasia, which is unacceptable and unethical.

We have incredible Palliative Medicine in our acute trusts and hospitals. They, and the teams in elderly care and medicine divisions, don’t artificially extend life but do allow people to remain comfortable as life draws to a close, they do have multidisciplinary conversations about ceilings of care, they do consider people as people regardless of their prevailing diagnosis.

Your post is likely to scare others, who might believe you are a doctor, into thinking that if their parent is a bit muddled no clinical care will be provided when the truth is they may have several happy years left. They may think it’s no point taking confused granny to have their chest infection treated as they’ll not be given antibiotics.

@CherryPavlova thank you for this clarity, insight and experience

I used to work on an acute ward; lots and lots of patients with severe brain injuries from eg RTAs, alcohol, suicide attempts ... and yes some with dementia ...

I remember watching several die, and several ‘recover’ and wondering what we were doing .

I remember older teenagers (we took age 16+) and adults screaming in pain, blind, confused, unable to move, eat, drink, verbally communicate and being told they’d done well to get to this stage .

What kind of a life were we saving them for?

Some did survive and had very good rehab that eventually worked and I can think of a handful living a good quality of life now . Some simply died two or three years later .

And some who died so so slowly, because no one seemed to know what to do, they looked horrifically ill. Something you can never forget . They weren’t there, it was just a body kept alive by O2 and fluids but it was awful . Their families were so, so distressed and I remember thinking how do they ever get past this? How do they cope?

My grandparents both signed a DNR a long time ago( thank goodness . I used to think them being Catholic would change that but my gran is very clear on her wishes and beliefs .

I wondered if the op is a dr in a psychiatric hospital maybe where there is a specific ward for patients with difficult to manage dementia who cannot be looked after in a care home setting .

Or alternatively an orthopaedic surgeon

I never understand the idea of wanting to prolong life at all cost if you have no quality of life whatsoever and are no longer aware of what is happening around you.

I would not want this for myself.

I think a mature society should be able to have these discussions.

I think once you are completely dependent on others for your every care needs and no longer have a functioning mind what exactly is the point?

There is no 'kindness' in letting people suffer in these cases.

I wish there was better understanding and knowledge of these things and more conversations like this, sort of .

Certainly as a healthcare assistant it was never fully explained, what end of life care meant in terms of legal stuff and procedures - we just went along with what we were told ; sometimes had a small training session or online module . Knew what a DNR meant and when ‘not for active treatment’ was used . I’m aware it’s different for qualified professionals .

But it’s vital we discuss these things more I think - for everyone .

@ConiferGate

I think this is a thread where it would be helpful to know which posters have personal and direct experience of advanced dementia (in a close relative, not Great Auntie June with whom frankly you probably never had to get involved). From a quick read, it feels like those who mention having real experience are far less judgemental than those who do not (or those at an early stage of this awful disease) and appreciate the importance of these conversations. And yes sadly this is one of those discussions where real life matters, you can’t know how it feels until it happens to you.

My situation: my mother is bed bound, non-verbal, doesn’t recognise us, incontinent, the lot. It’s an utterly miserable, demeaning existence. We have in place an LPA and have made clear directives that she is not to receive any intervention at all in the event of illness. Her GP has told me she was thankful to work with a family who understood the implications of trying to prolong life, and that we were wise and kind by choosing what we believe Mum would have wanted. She said it’s too much for most families to come to terms with, especially if they have never lost someone to terminal illness before. The care home fully support us too, as professionals who see this all the time, they know all too well the distress that interventions or a hospital visit could cause.

Perhaps @Stonehengecalling that’s one of the reasons more people try to prolong, we live in a culture whereby accepting death is seen as weakness or failure. Just look at the language we use “xyz passed after fighting a long battle with dementia”. “xyz lost her battle with cancer”.

I think perhaps the question you’re really asking is why don’t more families accept the inevitability of death in these circumstances when often it is the kindest thing to do. Yes, doing so may accelerate an infection or short term symptoms, but they can be managed well with palliative care and anyone who has been in this situation will know that surviving any health shock, no matter how small, will further impede the quality of life of any dementia patient.

To be honest I’ve asked myself this question even with long-term care provision. We are prolonging life even by providing 24 hour support, without medical intervention. OP and @dottycat123 I know you can’t truly answer me, but how long does it go on? The pain that it caused us all, and the way in which is ravages not just my mother’s memory but also our memories of her which are blurred by seeing her in this awful state.

For each family and individual the answer will be different. I can’t go without addressing @YenniferOfVengeberg comment. I can only assume s/he is someone with absolutely no experience whatsoever and therefore a very judgemental opinion. If s/he did have an opinion she would know full well that most dementia patients have a family member with LPA which gives the family full authority over any directives in place. Personally I find it hugely offensive that s/he thinks I should have nothing to do with it. My mother has entrusted us with decisions over her life and her death and personally, I take that responsibility very seriously. Even without an LPA, HCPs will make decisions with the support of the family where they can.

So OP, thank you for raising this important topic. And for those who have not been in this impossibly difficult and painful situation, perhaps it’s a time for listening and allowing those who have to discuss things that are so often taboo in a safe place.

I nursed my dad at home, for five years, from diagnosis to death. So yes personal and direct experience. My brother is a medic, extremely experienced. There is absolutely no chance he would use language that the OP has used here when talking about his patients.

We had a relative with Alzheimer’s-
13 years of hell. She was bed bound, doubly incontinent, mute, unable to recognise anyone, skin breakdown, catheterised the full works for the last 3 years of her life but as opened her mouth to accept food and drink she remained nourished and so her body just went on and on.
She eventually died from pneumonia as her lungs just filled up. Despite us signing an advanced directive to say we didn’t think going into hospital was in her best interest we literally had to demand that she wasn’t taken into hospital that last evening that she deteriorated, the paramedics were planning on taking her in. We’d had that happen over and over again and she was always stabilised and brought back from deaths door as the plan was always to try and save her life.
I understand there’s the litigation factor but something needs to change to allow an end to swiftly come. Our relative had a sudden deterioration around 5.30pm - it took many hours of wrangling to get a doctor out to administer end of life drugs. It was quite a cruel, stressful end.

coniferGate the key with a patient with dementia (similarly motor neurons) is early intervention. In an ideal world palliative care should begin when a person is given a palliative diagnosis regardless of how long they have left. For the palliative care team (made up of different disciplines) you have to build up a trusting relationship with family and patient. Sometimes this happens over time, sometimes you need to do it quickly. That's where advanced communication skills are required. These difficult discussions should happen ideally before the person loses their ability to discuss them. Then family feel that they are honouring a person wishes, rather than making decisions for them. There are family meetings/MDT meetings/best interest meetings etc Education and empowerment for the family is vital and when people have that it makes a big difference both in their expectations and avoids crisis situations where decisions are being made when emotions are high.

Giving iv fluids will not stop a dying person from dying. Feeding someone will not stop a person from dying. These are misconceptions. People can be independently eating a drinking right up to their death. There is a lot involved and unlike the OP these decisions are made on an individual basis in line with what the patient presents with. It's a balance of outcomes. With good palliative care there should be no blurring of lines, the reason I see this is usually when people die in hospital in response to a crisis. The majority of people want to die at home, unfortunately the majority of deaths happen in hospital. With proper advanced care planning by everyone involved (nurses/dr/family/nursing home etc) I honestly believe the majority of those admissions and therefor situations can be avoided.

My mum is at end stage dementia, but is very young. Her bodily frailties are entirely caused by the dementia. She can't communicate even minor medical problems, so they escalate - utis, chest infections. She barely eats, so she's severely underweight and susceptible to any infection. But she still has the heart and organs of someone in her 60s. She has no speech, is doubly incontinent, no recognition of people or language. Whilst she was still at home her whole personality changed so much that there was nothing left of the wonderful person she'd been. She now has no quality of life.

No-one gets it. The common image of the dementia patient being a bit dotty or stuck in the past, but still themselves and still lovely is just so wrong. I can feel the judgement from others: I couldn't put my mother into a home.... It's a privilege to care for your loved ones.....She looked after you....

We looked after mum at home for as long as we could. Probably longer than we should. It broke us all as a family. You're just left to get on with it. It's deemed social care, not a terminal illness. I wish we'd has more input from the medical profession for advance planning. I still can't believe the situation we're in. Poor mum.

candleabra I can't imagine how difficult this is for you. The care you must have given your mother at home under those circumstances must have been outstanding. Even with my job, I'm not sure I could nurse my mum at home for that long. You are clearly utterly devoted to her. I'm sorry after coming this far with her you are being let down by the professionals who should be supporting you

@ButiLoveHim32 thank you, this helps enormously. One of the hardest things I’ve found as a daughter and as a person is not knowing the answer to “when”. It’s a concept that I’d never encountered before I lost another close relative. Whilst it shouldn’t matter if you are to always focus on making the most of the time you have, it makes it very hard not to feel the kind of guilt that was discussed further upthread, whether the guilt stems from thoughts or from decisions.

Your experience and description rings very true for me when I think of what we went through with another relative in hospital. However, sadly it is totally the opposite to what’s happening in Mum’s (amazing) care home now. She’s under EOL care, but is currently stable. I’ve never been contacted by the palliative team and the respect form was completed with the GP. I would really value a meeting with the palliative team to talk to them about what to expect (I didn’t lose the other relative to dementia) but i don’t know if I should ask to do this or if so, even what to talk about.

It does highlight another theme which seems to be coming out of this, that the experience is very different in hospitals to other settings (of course because resources and expertise are concentrated there). Perhaps that goes some way to explaining why it’s so hard for some families to come to terms with difficult choices, because there isn’t really the support in place to talk about it enough in advance (compared to hospital where I’ve found that MDT are very open and absolutely amazing).

@Candleabra what an incredible daughter you are to her, I couldn’t have done that either. Our parents would never have wanted us to do more than we felt able to, they would want us to remember how important our own lives are when caring so deeply for theirs.

I agree with you OP - if there is little quality of life why prolong the agony? If the poorly person had been able to make the decision about whether to prolong being bedridden and unable to do the most intimate things for themselves they'd probably think the same.

To watch a much loved person go downhill is a very emotional and sad experience.