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?

@Ginfordinner

Wow, you are so angry *@TheSeedsOfADream*

I take it you haven't been through the heartbreak of a relative with severely advanced alzheimers.

It is obvious that those who agree with the OP have, and they feel justified in agreeing with the OP.

MIL had very advanced alzheimers, she fell and broke her hip. She had zero quality of life, was doubly incontinent, wouldn't eat or drink and was in a lot of pain. She wanted to die. Fortunately no-one had to make a difficult decision, but it was a relief when she died.

My mother died in June from Alzheimer's. That's how I know that if this person really is a HCP she would not be using the terminology she's using, and if she is genuinely treating patients with Alzheimer's she would not be coming onto a forum and asking why relatives want them kept alive. Because that's really not how it works.

@DressingGownofDoom. I understand your post and I know a lot about dementia (although I don’t expect you to believe I do). There are plenty of responses that completely understand where I am coming from. I’m sorry if I’ve upset you.

The people who are so pro-life at all costs... are you happy to spend your last year of life doubly incontinent, unable to speak or eat properly, unable to get up and move around, not knowing who anyone is, being moved around from home to hospital and back again constantly, with no autonomy at all?

@TheSeedsOfADream I'm sorry for your loss. But you're not engaging with the actual topic - you're using wild hyperbole and spurious claims against the OP.

I agree that life can be extended beyond what is ideal for the individual, and that we need to have open ethical discussions about when treatment should not be offered. It's clearly a very emotive topic, but shutting down the conversation with accusations around not wanting those initiating it to 'get their hands' on patients is reductive and gets in the way of what would be best for patients.

I wouldn't want to live my last years confused, unwell, unable to eat, in pain and with limited speech and mobility. Neither would my parents, and when it is my job to advocate for them I will do so in accordance with their wishes.

I’m a bit confused really by your post when my father in law had dementia he was at the severe end for many years other than a DNR we had no say over what medical treatments and interventions he was given and yes we did have power of attorney etc.

I’m not sure why but your posting style comes across as devoid of empathy and compassion. It makes you seem quite unlikeable even though I don’t particularly disagree with your stance I think it’s you as an individual and the way you post that is getting people’s backs up. I dunno I can’t quite articulate what is about you.

I suspect you’ve been in the job too long and have forgotten that your patients and their families are actual real people.

My maternal grandad died of dementia three years ago. Thankfully my granny didn't have to make any difficult decisions around dragging it out because he died due to an unrelated illness. He was kept comfortable and it didn't go on for years and years.

My paternal granny now has dementia and things are declining rapidly. She will likely to into a care home soon as she has started to wander out of the house and my parents are struggling to provide her daily care. She's the only family my dad has left on his side but I'm sure he won't let her suffer longer than necessary.

Sorry, that should say my grandad died WITH dementia.

I thought that decisions about medical treatment for patients who lack capacity are made by their medical team in their best interests, in the UK. So I don't understand why OP is saying that she always follows family requests because that suggests that she is treating people against their best interests. I'm confused.

Have been discussing this with my GCSE class in the past few weeks (RE teacher covering the life and death topic before anyone has a conniption!).
Attitudes really seem to have changed in the 15 years I have been teaching it, they are a lot more aware of the quality of life above sanctity of life and far more in favour of euthanasia than students used to be. I wonder if this is linked to a disneyfication of everything? The whole 'follow your own path' you deserve to be happy, never mind anyone else' concept seems to be driving a need to get rid of all suffering no matter what.

I think this thread really illustrates how important advanced care planning is for all of us. Illness, death and dying is something none of us want to think about and when the subject comes up with loved ones the temptation is to brush it off, or try to reassure them.

I'm a nurse and work a lot with elderly patients, with and without dementia, and people approaching end of life. It can be a terrible pressure for families to try and decide what a loved one "would want" and family members don't always agree. I should say, at the end of the day it is up to the medical team caring for the patient to advocate for, and make decisions in the patients best interest if they dont have capacity, so that they are comfortable and safe.

Treating an infection or dehydration might not prolong life but it can reduce pain/distress/delerium etc.

And there are loads of reasons why relatives might want a patient to stay alive, from genuinely disagreeing that they have no quality of life, to firmly believing that life should be preserved at all costs, to just not really being ready themselves for being without that person even if that person is not really their former self anymore, to secretly totally agreeing with the doctor but anxious about saying anything that they feel might be interpreted as "I don't love my relative because I am OK with them dying". I don't think any of these are that hard to understand and it's why these decisions should be made objectively by the team treating the patient taking into account the views of the family but not being driven by them.

@TheSeedsOfADream why are you being quite so aggressive about a legitimate topic of discussion? Personal attacks on the poster is not a rational way to present an argument.
This is a perfectly reasonable issue to consider and one I have to discuss numerous times during an academic year, whilst managing the feelings and experiences of teenagers. If they and I can discuss reasonably, I would hope you could too.

Dementia is a life-limiting condition and as people with Dementia deteriorate they will require palliative care, just like people with other life-limiting and terminal illnesses. Grief and loss are so very complex and involve a multitude of emotions. Dementia involves families facing loss of their loved one on an almost daily basis caused by changes to their behaviour and abilities. No one should be criticised for doing what they feel is best for their loved ones. How can we judge a persons decision when we do not know the reasons behind their choices. Perhaps they are dealing with a family member who they know fears death, perhaps their relative refused to discuss what their wishes were and this causes uncertainty and confusion for their loved ones. Death and dying are still very much taboo subjects. This is not a unique situation for people with Dementia and their families. I know you’ve highlighted it OP as you are a HCP working with patients with Dementia, but it also applies to people with illnesses such as cancer.

A quote from Alzheimer’s Society, which perhaps explains more eloquently than myself the complexity involved with decisions made by the families and carers of people with dementia,

“A person in the later stages of dementia may have symptoms that suggest that they are close to death, but actually live with these symptoms for many months. This uncertainty makes it very difficult to plan and put things in place for the end of someone's life.”

I am a Nurse too OP and have over 25 years experience working with patients who have dementia and their families. I feel privileged to have been able to care for people along the various stages of their journey with dementia from assessment and diagnosis to end of life care.

I agree that when a patient doesn’t have capacity, (as in the case of my aunt on account of her schizophrenia), ultimately the medical team make the decisions. But, they are calling me on a daily basis to ask my opinion. Thankfully, so far we have been in agreement, as I truly believe we all have her best interests at heart.

@CarterBeatsTheDevil. Where I work (in the hospital and within the wider community we serve) we have TEPs(treatment escalation plans). Ideally these are filled in with the patient. If the patient is unable to articulate their wishes we ask the family. They are a ladder starting with oral treatment, then IVs, then (if appropriate) non invasive ventilation, then ITU then CPR. As I said previously, CPR is a medical decision. Where a family is still insistent that their relative has CPR after the futility of it (on their relative) is explained we will often do one round of CPR rather than have a full blown argument with an insistent, scared and grieving family.
In terms of giving intravenous antibiotics and fluids I’ve only ever had 2 families ask me not to, and as I said before, I don’t know any drs who will withhold this level of treatment on patients with dementia.

The GP at the nursing home advised no hospital admission for my parent, they were right. The parent had had a recent, severe stroke, already suffered with very advanced dementia, the GP said no, I want the person to be made as comfortable as possible. We had already made this plain in previous contacts with the hospital. I think the nursing home were anxious to not assume the family stance had not changed hence GP involvement straight away once the final (brief) illness occurred. The parent had the best death, folded in the loving care of the amazing nursing home. And I say the best death because the other parent suffered an unbearably chaotic and distressing death so I know what I am talking about.

OP I can't answer your question, sorry.

This is difficult because we've forgotten, as a cohort, what death is like. It isn't failure, it is unavoidable (taxes!) and comes to us all.
Sorry for the ramble, I am tired and a bit miserable!

There is an abundance of evidence that health care professionals significantly underestimate quality of life compared to both patients themselves (where their opinion is possible to ascertain) and family members.

Families make decisions for a variety of reasons. They know their relative best, they may know that relative’s views on intervention and invasive treatment far better than you do. They may have a different perspective on their best interests than you do (that doesn’t mean they’re wrong). They may lack information on the benefits and risks of treatment, they may not want to take decisive action to end their relative’s life, they could be selfless or selfish, ignorant or informed and not make the same choice as you.

There is this idea that family are irrational and selfish and want to preserve life at all costs and health care professionals are objective and caring and act in patients’ best interests. This doesn’t appear to be true. If you as a health care professional do not agree with family on the best interests of your patient who lacks capacity then there is a process for you to follow culminating in court.

OK here goes...
My mum has severe ataxia that later developed to parkinsons and she also had dementia. Her health rapidly deteriorated in 5 years.. She was like a corpse surviving on a tube.. My father and my siblings and I all nursed her until she went into a hospice.. We all took the very difficult decision to withdraw her.. It took 3 days.. But she had gone blind, she was 6 stone, her skin went mottled and grey.. The day she left us all her family were by her bedside. She suddenly stopped breathing. It was incredibly peaceful albeit heartbreaking. I think if this was me.. I'd tell my daughter to let me go sooner than that.. Its no life.. Its just existence.. I can see why families do want their family members to hold on.. But having lived through the pain of watching someone I love wither away into nothingness.. I'd not want that for me if I was in that position.

My dad died of pneumonia in July but was in the advanced stages of dementia. In his final two weeks he basically starved to death as we didn’t want a feeding tube put down to prolong life. It was horrific and I begged the doctors on more than one occasion to speed up the process but there was nothing they could do.

We need some BIG conversations about quality versus quantity of life in this country but I can’t see it happening anytime soon .

[quote balloonsintrees]@TheSeedsOfADream why are you being quite so aggressive about a legitimate topic of discussion? Personal attacks on the poster is not a rational way to present an argument.
This is a perfectly reasonable issue to consider and one I have to discuss numerous times during an academic year, whilst managing the feelings and experiences of teenagers. If they and I can discuss reasonably, I would hope you could too.[/quote]
I teach teenagers and we also discuss euthanasia.

Read the OPs posts and compare them with @Rebeccasmoonnecklace's.

Maybe another lesson we could give our teens? Tone. Empathy. Real understanding. Caring.

I suppose I'm shocked at any HCP seeming to know so little of how the procedures /bureaucracy really work, claiming to have acted upon the wishes of 2 relatives to have "brought about a speedy death" (when not just me, but others have questioned this, because whilst relatives are of course consulted at all stages, care is not simply withdrawn on the say so of the next of kin) and who uses the term "a bit dotty" etc etc.

TheRuleofStix we really do need some big conversations about this.

@CarterBeatsTheDevil. To clarify; I do think best interest decisions should be made by medical professionals. In my opinion NOT treating someone with end stage dementia is a best interest decision, but I seem to be a lone voice in hospital medicine and amongst relatives in this thought (hence starting the thread). I’ve been told before (by a care of the elderly consultant) that withholding treatment is unethical (when the family were very clear they didn’t want treatment).I think treating is unethical. Even HCPs can’t decide.

Well I have to say that as a HCP the way you speak of your parents sounds so disrespectful and uncaring . I really hope that you don't come in contact with any of my relatives.

To a certain extent what you say has a point . My father had vascular dementia to the point he was bed bound with no quality of life and I know there was no way he would have wanted to have lives the way he did for the last 6 months of his life .

Thankfully the people who cared for him were caring and compassionate people .

You just sound nasty . So nasty . It's the language you use . So nasty .

I don’t know if it’s different because my grandmother with dementia (who passed recently) was in the Netherlands, but we had a do not resuscitate for her (her wishes, incidentally) and she basically stopped (refused) eating and drinking at the end. Her doctor felt strongly that that was her choice and should be respected, as did we. She was given IV fluids and morphine to make her comfortable but we did not force other treatment.

@TheSeedsOfADream ironically I am pretty appalled by your tone and lack of empathy and real understanding of an important issue. Your posts seem to be trying to shut the thread down, because it makes you feel uncomfortable.

I think one issue is the many forms dementia can take, it isn't always a gentle decline in sweet granny. My relative has alcohol related cognitive impairment, vascular dementia, Alzeheimers and Korsakoffs. His decline has been rapid, aggressive, dangerous and scary. He doesn't really exist as the person he was, but his body is relatively young. He seems to me a literal zombie - the physical manifestation of a former person. What do you, what should you, do with that?