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?

I gave a hundred pounds to the care home after DM died, to put towards the staff Christmas party - OMG you'd think I'd given them the earth. How can people not feel the need to repay these poorly paid unappreciated care workers for the almost impossible job they do. I'm not saying everyone should do this but I felt they normally got very little thanks, perhaps because everyone is embroiled in the tragedy of the loved one deteriorating and dying, certainly I have found family members very quick to criticize - please remember to give thanks where it's due.

CherryPavlova you are clearly talking about a different stage of dementia than that raised in the OP. The Wishing Well stuff is all very lovely at its appropriate stage, we are concerned about loved ones who are well past that stage and beyond such help. I feel you have no understanding and empathy for people or their families experiencing this.

To use the term 'murder' on such a difficult thread as this, where people are opening up about such raw and upsetting experiences, is both goady and cruel. Please reflect on this and the general tone of this discussion. This is not an abstract for many - this is current or recent lived experience.

@HeadNorth

I would be distraught if my elderly beloved grandmother died of Covid, not because I expect her to live forever but because she wouldn’t be able to have her family around her at the end. She also wouldn’t be able to have a big, religious funeral.

Yes, but that is all about what is best for the family, not the sufferer. Which is the opposite of compassion, if you think about it. If someone is going through a living nightmare, which is what advanced dementia is for many, then to wish that prolonged for even an hour so you can get your big funeral is pretty cruel. When someone is living in permanent fear and distress, anyone who really cared about them would want nothing but an end to that suffering as early as possible. It is irrelevant to many advanced dementia sufferer who is around them - the person they were has gone, only fear and confusion remain.

@HeadNorth

No, you’ve misunderstood. That’s what she wants. She has clearly expressed a wish to have her family with her at the end and the big funeral. I am agnostic but it’s important to her.
As it happens, she’s a very healthy woman with no cognitive issues. However, if she later developed dementia, we’d all still know her life long wishes.

Look, I vowed I wouldn’t be returning to this thread but all this talk about ‘wanting’ elderly parents to die of Covid is pretty horrid and insensitive at the moment, I really don’t think it’s a peaceful and painless death by all accounts.

What cherry is saying is really simple. Treating someone isn’t always just to prolong life, it’s to try to make that life as comfortable as possible. People blithely talking about sending someone to the end of their life without a drink of water or pain relief is shameful, it really is. There is an enormous difference between legal euthanasia and what the OP claims should be done.

The biggest problem is the lack of hospice beds where there is specialist care for patients at the end of life for all causes of terminal illness. My dad spent his last days on a hospital ward where there was no privacy or dignity, due to the closure of other wards six patients were crammed in to a space designed for four, less than three feet between beds. The gold standard for anyone reaching the end of life should be an individual room where them & their family can spend their last days & hours together in private with specialist end of life staff. Hospices have a range of drugs & treatments so that no patient is in pain or distress & the experience of what is needed & when. They also have the experience of supporting families & loved ones through the death process & afterwards. There should be more money put in to funding hospices & not expecting them to be funded through charity donations. We asked for my dad to be moved to a hospice that was closer to where he lived so that my mum could get there easily should she need to, there wasn't a bed & we were stuck in traffic trying to get to the hospital when he passed away, not holding his hand as we & my dad wanted. By the time we arrived, he had been dead for 15 minutes, had he been in the hospice we would have been there 40 minutes earlier as we would not have had to go through the city centre.

Having seen far too much of late stage dementia, dh and I have added a paragraph to our Health and Welfare Powers of Attorney, which go something like this:

‘If I should develop dementia, or any other condition where I am unable both to care for myself and speak (with full mental capacity) for myself, then with the exception of e.g. fractures, I emphatically do not want any life-prolonging or life-saving treatment, whether medical or surgical, if Nature might be trying to let me go. I ask for palliative care only.’

Our dds know our wishes but having it in writing will avoid any doubt.

There is a very common misconception about the facts when someone nearing the end of life stage begins to refuse food and drink. Because the body is beginning to shut down, it may well be counter-productive to tube feed or give IV fluids.

As a doctor once put it, ‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’

@Lillygoligjtly, I’m afraid it’s all too true that social workers often have very little understanding of the day to day, practical realities of caring for someone with dementia. They may have been ‘trained’ but they still don’t get it - though to be entirely fair I think very few people do, unless they’ve lived with it. I know dh and I were pretty clueless at first and had to learn the hard way.

There is the added factor of the person in question so often being on their best behaviour when any such official person visits - also known as ‘hostess mode’.

GPs alas can be the same. I’ve know of one saying e.g., ‘if she can’t remember to take her medication, you could always write it down for her, or phone to remind her.’

No conception that any written instruction would be forgotten almost as soon as she’d turned her eyes away, and ditto any message by phone forgotten almost as soon as she’d put the phone down.

It’s occurred to me that a good training session for any such professionals would include the instructor saying brightly at some point, ‘Now please write around 250 words on that, according to the guidelines I’ve just given you.’

Cue bemusement. ‘On what? And you haven’t given us any guidelines!’

Exactly. The realities of an almost non existent short-term memory, which can occur quite early on in dementia.

Music therapy is irrelevant to some. Love of music, hobbies, interests was the first thing to go with my dad, followed by personality change, then anger which has stayed constant for 16 years. Who on earth would want be in a constant state of agitation for that long? The no longer being able to paint or play the guitar went 16 years ago. The refusal to engage with any technology, 16 years ago. On the other hand my Aunt had the lovely docile dementia everyone who hasn’t experience with it seems to imagine, even at the end for her it was heartbreaking watching in her hospital bed constantly burst into tears, then forget she was crying only to start again 30 seconds later, for hours.

I don't think anyone is saying there shouldn't be pain relief in those near the end of life but rather not to do anti-biotics etc. So to ease pain and make someone as comfortable as possible is of course desirable..

Am bemused by those who have come onto this thread and seem to want to shut down the discussion.

I agree about the loss of interests. Dad used to be a real jazz enthusiast. Mum and dad were cool cats! But it's as if music hurts him now. In fact any sensory stimulation seems to. What he likes most is gentle stroking of his forehead and hands and arms but sometimes even that he calls out as if in pain. Soon there will be nothing I can do for this immobile, incontinent man who has lost almost everything which made him a bright, powerful human being.
Honestly I've tried everything. And the bloody pandemic has made everything so much worse.

Seeing what has happened to Dad has made me sure in the knowledge that I wouldn't want my life prolonged in that state. Distress is his only discernible emotion

They don't want to shut down the discussion. They have relevant personal experience that differs.

I can promise you that it is very difficult to watch someone die of infection when doctor's won't prescribe antibiotics or an IV.

The catheter blocks, they become dehydrated and agitated with the pain. The cry out and their skin changes. It is inhumane.

@Caeruleanblue

I gave a hundred pounds to the care home after DM died, to put towards the staff Christmas party - OMG you'd think I'd given them the earth. How can people not feel the need to repay these poorly paid unappreciated care workers for the almost impossible job they do. I'm not saying everyone should do this but I felt they normally got very little thanks, perhaps because everyone is embroiled in the tragedy of the loved one deteriorating and dying, certainly I have found family members very quick to criticize - please remember to give thanks where it's due.

Thank you, as a care worker thank you for your words and your understanding. I will say though that the gesture of thanks and appreciation is sometimes, overwhelming I think is the word I'm looking for. The people we care for are close to our hearts in the vast majority of cases, how could they not be when we spend so much time with them? How could you not come to care for people beyond what is required of the job. Some weeks I see the residents I work with more than my own family. In my last place, the residents watched me go through a pregnancy (a good few years ago now mind!) I had the most amazing advice coming out of my ears from experienced mothers and grandmothers, I had hand knitted booties, blankets and hats as gifts, they clamoured to meet the new arrival and some followed her early years until I left. In turn I knew how they like their tea, which biscuits are favourite, that X's daughter will ring at such a time as she lives abroad, that Y's son is 50 this year and will I help with the card? I know who's not speaking to who in the family, I know how many grandchildren and their names. That's how you care for someone properly, you listen and you learn from it. And you should also listen to those who know them, families and the people that care for them every day. Residents tell me things they don't want to tell their families for fear of upsetting them.

I am humbled when I'm thanked by a relative who's just lost a family member, in the kindest possible way, it's not necessary to me, I don't want people to think bad of themselves if they don't.
What is needed though is for society to blame less, to see the fault where it actually lies and realised we are probably the best resource in caring for people with care, dignity and love until the end and listen to us too, and value us a bit more.
I've never helped someone to die, in it's baldest meaning, I have though, I hope made a death that was happening as pain and distress free as possible, within my skills and remit. It's extremely frustrating to see other areas of the 'team' that's supposed to help with this fail time after time, to be ignored when you ask for help and for any help coming to take too long to make a real difference.

@mrscampbellblackagain

I don't think anyone is saying there shouldn't be pain relief in those near the end of life but rather not to do anti-biotics etc. So to ease pain and make someone as comfortable as possible is of course desirable..

Am bemused by those who have come onto this thread and seem to want to shut down the discussion.

And I’ll make the point again.

If an end stage dementia patient develops severe pleuritic pain secondary to a chest infection that is severely exacerbated by coughing, antibiotics are often widely considered to relieve those symptoms.
Similarly if someone develops the painful, distressing symptoms of a UTI, including worsening delirium, agitation and potentially sepsis, then antibiotics can and SHOULD be considered. These discussions and decisions will be made by a multi disciplinary approach in conjunction with family.

There are a number of worrying misconceptions about ‘palliative care’ on this thread.
‘Being put on palliative care/ I only want palliative care’

Palliative care is not a stand alone speciality. I’ve already talked about the dangers of polypharmacy on this thread. Palliative care does NOT rule out nutritional support and hydration, antibiotics, blood transfusions etc. All of those interventions can be used to manage symptoms.

Another worrying theme that emerges on threads like this is that a diagnosis of dementia automatically strips a person of the capacity to make decisions around their own health care.

For anyone who believes that end stage dementia patients should not be considered for any of the interventions above, there is a wealth of medical and nursing research available around the area of terminal sedation. Worth a look when you are discussing these issues with your family members.

And the GMC guidelines for end of life are quite clear too!

@chickenyhead

And the GMC guidelines for end of life are quite clear too!

As are NICE guidelines.

The guidelines may be clear, but on this thread you have many posters poster describing relatives enduring weeks, months or even years of distress. So the guidelines plainly aren't much help when we are forced to watch our loved ones suffering with no end in sight.

Without guidelines being followed maybe you would share my experience up thread, which is also equally valid at end of life. Just not to you.

Thank you!

I really think all viewpoints are valid but the rudeness shown to the OP is unjustified.

And gold standard care clearly doesn't happen everywhere as so many on this thread have illustrated.

@HeadNorth

The guidelines may be clear, but on this thread you have many posters poster describing relatives enduring weeks, months or even years of distress. So the guidelines plainly aren't much help when we are forced to watch our loved ones suffering with no end in sight.

And I am not minimising or belittling the experiences of those ( myself included) who have witnessed less than satisfactory levels of care that are still being provided in end stage dementia care. But the reality is that it’s the approach advocated by the OP which CAN exacerbate suffering and distress. To simply state that end stage dementia patients should not be considered for antibiotic therapy or basic investigations is inhumane. What I would say is that if your loved one ends up in A&E, or is resident in a nursing home, ask for a specialist palliative care assessment. This will provide a holistic assessment of ALL aspects of their needs and not just the snap shot that is evident when a patient is presented to A&E.

@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?

We had and we didn't want her treated. DNR signed very early.

She was in hospital on and off for nearly 2 years and they looked after her so well, but we were glad to let her go. It's still a relief a few years later, even though I miss her so much and dream of her nightly.

For anyone wishing to explore these issues further for themselves or a family member, areas to consider are

Your wishes for your care-how and where you would like to be cared for if you are seriously ill or reaching the end of your life.
Advance Decisions to Refuse Treatment ( This needs to be written down) Look at issues around resuscitation, nutrition and hydration, antibiotics etc.

You also need to research and consider power of attorney for yourself and your relatives and also, worth researching what capacity actually is in terms of healthcare decision making.

@CherryPavlova

You have seriously not got a damn clue.

[quote daisycottage]@CherryPavlova

You have seriously not got a damn clue.

[/quote]
On this actually, she has.