Dialysis situation - is this cruel?

[mrs_overall]

My sis goes for dialysis 3 times a week. Seated next to her is a patient with dementia. He spends the whole 4 hour session, 3 times a week, screaming his head off.
Why on earth are they putting him through this, or is it a case of life at any cost?

[ethandron]

i think it's more a case of everyone's entitled to the same medical care. if he wasn't given it, then the press or whoever would maybe have a field day and ask why a demential patient wasn't given dialysis. it's a difficult call really. maybe he will get to the point when they'll stop...

[ethandron]

dementia not demential - doh!

[Sqad]

If there were plenty of kidneys to "dish out" then I would agree with eth, but kidneys are in short supply.

My answer would be that he does not deserve a kidney because his quality of life and his ability to deal with the complexity of transplantation is impaired.

The Ethics Committee or transplant team has to decide who is going to live and who is going to die, that involves all types of transplantation. Now Drs have been criticised for "playing God" and acting like "God" but who decides who will live and who will die.

I am glad that I have never had to make that decision.

[woofgang]

It might be because he has an LPA in place that declares that its what he would want.
...personally i agree I have secondhand experience of poor reaction to dialysis and its not something that I would want for myself or a loved one if I was demented or they were.

[karenmac60]

Sqad, the question isn't about a kidney transplant, it's about dialysis. The patient might not be on the transplant list - many choose not to be. If he wasn't given dialysis he would be dead in a surprisingly short space of time, and while he may not cope well with the actual dialysis sessions themselves he may not be as bad as that the rest of the time. Are people with dementia now not allowed the right to life? It would be similar to stopping feeding anyone with dementia - and that would be barbaric! If he gets to the stage where he has no quality of life at all then yes, they may choose to stop, but until then he has as much right to life saving treatment as anyone else. It's obviously distressing for those who have to witness it and I have sympathy for your sister Mrs O - Mr Mac dialysed for years and I know from him how unpleasant it can be at the best of times.

[Sqad]

karen ...then I am mistaken, I was under the impression that all patients on dialysis used this as a precursor to transplantation.

I stand corrected.

[boxtops]

I agree with karen, I have a friend who was on dialysis for some years, no suggestion of a transplant.

[ethandron]

i was talking about dialysis not transplant, as the original poster was.
my answer is not my opinion as to what should or shouldn't happen, but just a guess as to why this man is being given dialysis.
i agree, it's a very difficult decision for anyone to have to make. we have a relative, a young lady of 33 who has severe learning difficulties and is doubly incontinent. she has kidney problems too and will get to the point when, under normal circumstances, she would be offered dialysis. i've never had an indepth conversation with her parents about it but reading between the lines, i doubt she will have dialysis, either because she won't be offered it or because her parents wouldn't put her through it.

[Sqad]

boxtops...why...because no suitable donor came along or because he/ she refused transplantation?

[karenmac60]

Mr mac has known a few folk over the years who have chosen not to go on the list - usually because of fear of surgery or not liking the thought of receiving an organ from a dead person. He also knew a few who weren't able to go on the list because weight issues or other health problems would make surgery too dangerous for them. He has said himself that when his current kidney fails he will not go on the list again as he had a lot of complications after that transplant.

[brenda]

Karen --I could not agree with you more.Have experience of dementia at close hand
Dementia sufferers do not choose the life they have , nor have they brought the situation on them selves.Every sufferer lives a life in which like us they are happy , sad , distraught , frightened and so on. I am saddened that it could be even considered that they have no quality of life., and are therefore banned from a treatm ent such as dialysis.
The quality of life dementia patients have is not our quality of life , but a quality dealt by a cruel disease, are we then to choose that that they are not fit to live.and refuse further help.?
Selectivity between life or death is not ours to make in this scenario.

[karenmac60]

Exactly Brenda. I worked in a nursing home years ago, and a lot of the residents had dementia - but the thing is, in the majority they were very happy! It might not have been the situation they would have chosen for themselves, but once they were there they were pretty much happy with their lot. Many dialysis patients don't do very well on the machines - they may just keep quiet about it and suffer in silence, something a dementia sufferer is less likely to do. It doesn't mean the dementia patient is suffering more than anyone else and it doesn't give anyone the right to deny them treatment.

[brenda]

Karen --a kindred soul -- I bless you.

[anneasquith]

no one should die because of kidney failure when dialysis is available, as long as this patient is needing treatment then it should continue. im assuming his family and or doctor have decided to give him treatment.

[woofgang]

I too have experience of people with dementia..what worries me about giving dialysis is that many of them have no concept of whatever they are experiencing at the time ending. So for that 12 hours a week he may not only be suffering but not be able to comprehend that it is only for 4 hours and that he will be fine afterwards. I agree its a tough call and many people with quite severe dementia are actually very happy generally and if this is the case here then what is happening may be justifiable. I would NEVER EVER suggest that simply having dementia is a good enough reason to deny someone treatment but you always have to consider how upsetting/terrifying the treatment would be for them.

[mrs_overall]

Thanks for your interesting answers.
Sqad - read the question - there was no mention of transplant!
This poor man is in his 80's. I personally can't see the point of keeping him on dialysis because it distresses him so much and he is not aware of what is going on.

[karenmac60]

He would be dead in a matter of weeks. If his physical health is generally good otherwise than there would be no reason to stop it just because he has dementia. That is akin to euthanising anyone with mental problems mrs O!

[brenda]

Can fully understand your post , as seen from an outside view, but this man is probably someone's loved one and they would not wish him to be taken from them on the judgement of an on looker,They will still see him as he was,and love him still in spite of his illness, maybe even more.
Being in his 80's as you suggest ,is not a factor for consideration in this case, and certainly not a reason to condemn him to death.
Am certain that the NHS does not save lives at any cost , and helps those who are able to meet the strenuous physical requirements required to undertake the rigours or dialysis, and for whom the process is seen as helping to save a life on considered medical grounds.

[purple-rain]

Hi All,
I am a specialist nurse for patients with kidney failure, both before and after dialysis or transplant. All your comments are very interesting and this situation is one that we deal with on a daily basis.
The decision to dialyse or not is one that we take very seriously and normally we know the patients for quite a while before it is needed. We have many conversations with the patients and families about what treatment they would like and offer everyone all choices, including conservative management.
Some patients we think are more suited to a non-dialysis pathway can demand to have dialysis and vica versa. The majority of the times, however, both the patients, the families and professionals all come to an agreed pathway which is in the best interests of the patient.
This is a decision that takes months and sometimes years of planning. The gentleman in question (or his family) would've come to a decision ages ago and there are probably a lot more issues with this case that we are unaware of.
Also being on the transplant list is not automatic and is dependant on many issues.
Hope this helps.