Dignity in dying vs PEG artifical feeding

[unclekev]

I have not posted on hear for over a year. I am the brother of Andrew, the man about which the thought provoking Sunday Times Article "The Vanishing Man" was written (http://women.timesonline.co.uk/tol/life_and_style/women/families/article2715310.ece).

Since the article Andrew has been admitted to a specialist care home and his Dementia has agressively taken hold. To the point where by February 2009 he was doubly incontinent, no longer able to walk or talk and no longer able to swallow. His mother, sister and I felt the loss of his swallow reflex was the beginning of the end of Andrew's suffering and he would be allowed to die with what little dignity he had left. Sadly his wife felt differently wishing to prolong his life, and after seeking medical advice allowed Andrew to undergo a Percutaneous Endoscopic Gatrostomy (PEG) procedure under general anaesthetic. For those who are not aware the PEG is a means of artifically providing nutrition through the abdomen directly into the stomach.

I for one was vocally against the procedure as I saw it as prolonging Andrew's dying when he was clearly suffering and had no quality of life. Other's involved in his care felt otherwise.

The sad fact is that 12 month's on from the PEG, Andrew is still with us. He now has no sensation or recognition, is virtually blind and is being kept alive artificially by the nutrition the PEG provides. So much so that in the 12 months since the PEG was fitted he has put on 20Kg in weight!

The future? Well at some point the decision over removing the PEG must be considered. I am not looking forward to that point.

I hope this helps other carers/relatives if they ever have to make decisions over feeding tubes in end-stage dementia.

Thanks for the ongoing support,

Kevin

 

[Sandy]

Hi Kevin,

Thank-you for taking the time to update us on Andrew, even though the news is sad.

I remember the thread that we started when that article first appeared and how many people could relate to Andrew's plight:

http://forum.alzheimers.org.uk/showthread.php?t=8478

We have had discussions on PEG feeding here on TP from time to time and I tend to refer people to the Alzheimer's Society's position on palliative care:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200167&documentID=428

The Alzheimer's Society believes that in the advanced stages of dementia, quality of life rather than length of life should be prioritised in line with the General Medical Council's guidelines on withholding and withdrawing life-prolonging treatment (2007).

The use of a tube for artificial hydration and feeding should not be considered best practice in the provision of care of people in the advanced stages of dementia.

Sadly once the PEG has been fitted, the process of removing it becomes much more ethically complex.

It must be an incredibly difficult situation for all of your family, including Andrew's wife. I can only send you all my best wishes and hope that you can sustain one another through the times to come.

If anyone reading this is concerned about making advanced decisions regarding their own medical treatment, you might want to see the Alzheimer's Society's factsheet on this topic:

http://www.alzheimers.org.uk/factsheet/463

Take care,

 

[connie]

Thank you for the update Kevin.

Lionel is now in a similar position and the decision has been made not to have a feeding tube fitted. I am just so glad that the decision was reached in a calm manner, after consulation with his doctor and those caring for him. (alhough I know his wishes).

However it is not easy to sit by someone who wants food, but chokes when he swallows. He turned purple again today whilst I was feeding him. I do know however he would not want his life prolonged by artifical means.

Sad times and cases all round.

 

[Grannie G]

Hello Kevin

What a sad story Kevin, my heart goes out to you. It`s made even worse by a difference of opinion causing family conflict.

And from your perspective too Connie, it shows there is no good solution. Whatever the decision, the suffering is still there.

 

[PeterG]

Interventions or no more

Last night I made this decision, no PEG feeding, no more needles in her arm. Jen returned to her care home with me after a few hours st the general hospital when blood tests were taken & a saline drip given.

As she had no acute infection, her condition was diagnosed as a significant & rapid decline due to her dementia.

She can't swallow, has lost a lot of weight & cannot focus her eyes now.

I do understand why someone would want to keep a close relative alive for as long as possible, but not for us.

Jenny will now be given "end of life care" at her care home, where she is in familiar surroundings, cared for by staff who know her & she appears to be comfortable with.

Although we have had 10 years to come to terms with this, its still hard when the moment comes to actually say it out loud, no more interventions, do not resuscitate.

 

[sleepless]

Thank you for posting your message here at what must be the most difficult time for you.

I do feel so much for what you are going through. If I may say , I think you are very brave, and loving, and selfless.

Be strong now, and give of your love as you have before, and I hope you find comfort and support from those around you and here on the forum.

from sleepless.

 

[birdieanne]

We are at this stage with my FIL. He is still at home with us and he has had a rapid decline. He is only having sips of water and is on Morphine to keep him comfortable. Palliative care is still poor in Dementia and we feel many health professionals may not know when a person stops living with Dementia but is dying of the disease. Many do not see it as a life limiting disease.

Food is seen as nurturing by carers so to a family it can be very distressing when food intake lowers. This is where we need good support in the form of end of life care. Unfortunately The National Dementia Strategy fails to identify this as an area for development.

Our thoughts are with everyone at this stage of care.

 

[Tender Face]

Deep breath

Long time members may recall my mother’s ‘PEG’ was fitted without consultation or consent (and no issues of next-of-kin/family disagreeing). (Terminal cancer + rapidly advancing dementia).

Transferred to hospice the consultants were aware of my concerns and within 24 hours of her admission sought my views on withdrawing the PEG. I was told the PEG was already infected at site, and should a blockage occur it would be medically necessarily to remove it anyway. I agreed to leaving the ***** thing in situ as it gave a means to administer drugs directly which otherwise were difficult for my mother to swallow ....... but not to continue artificial feeding .... (as I believed would have been my mother’s wishes and was later vindicated when she was lucid enough to participate as best she could in a DNR ‘interview’).

I was told by the doctors the decision was not mine .... but my input – on behalf of my mother - at that point unable to express her wishes – would be taken into account.

Sheer coincidence ? – the tube became blocked and its removal arranged within the next 24 hours. To this day, I don’t believe it was blocked, can’t even be sure it was infected. I may be wrong. But I believe we were finally in the hands of medics who understood quality and not quantity of life, and released me from the burden of making such a decision.

And for that, and the quality of life my mum enjoyed for some months after, without being tied to something she could not understand or tolerate, for not prolonging her suffering, but releasing her to some quality of life - if every day risked aspiration if all she could manage was ice cream - but with it a glimmer of some enjoyment, I am eternally grateful.

Just my own experience.....

Karen, x

 

[Margaret W]

This is an uniformed response, thought I have read about PEGs before. The prospect was put to us with my mother in law, aged 91, after a severe stroke. We discussed it and refused to have it. She died a week later, in a calm and undisturbed manner. I feel that was the best for her.

Everyone is different in their belief for extending life. We all respect that. I am not an supporter of it unless it is likely to lead to a significant imrovement in the quality of life.

I wouldn't want it myself.

But feelings run high in these situations, and you can understand relatives wanting to take every opportunity to extend life where possible.

I wish anyone in the position much love.

Margaret

 

[Tender Face]

Sorry, I didn’t make it clear – I was trying to address the issue of withdrawing artificial feeding once instigated .....

Kevin has bravely raised such a valid issue ... if the first decision has to be taken – then at some point (unless there is some other intervention which precludes it) another and more difficult decision follows. I wonder how often that is part of the initial process?

I have to agree with Sandy:

Sadly once the PEG has been fitted, the process of removing it becomes much more ethically complex.

And I cited my mum’s case as illustration.

My love and thoughts with everyone on this hugely emotive issue.

Karen, x

 

[Royalslady]

Kevin, my thoughts are with you .... it is a horrible situation to be in and I do hope you get the support from the professionals in dealing with this. Obviously if there is still disagreement between siblings and wife, then this may be difficult, but lets hope that the right thing is done before too long.

My Mum is at the stage where she can no long swallow food, but she can swallow fluids .... there are already the appropriate notes on her file - no PEG, no drips, DNR - she lies in her bed all day now, barely moving and rarely opening her eyes. Who knows how long it will be, but as long as she is calm and comfortable, we can hope for no more.

Take care
Patx

 

[lin1]

I know everyone has different views.

Personally I believe that quality not length of life is more important.

over 2 yrs ago mum was quite rough and not expected 2 live much longer.as now being cared 4 at home.
doc explained bout this procedure (1st time we'd heard e it)without any discussion dad and I both said no.

fortunately mum's health improved. and we have had many good times.

dad and I have decided that if/when the time comes Hospice care would be the best option.

 

[unclekev]

All,

Thanks for the many supporting posts. Clearly I am not alone in being faced with the dilemma of feeding tubes/end-stage dementia.

I find it very upsetting that medical professionals vary in their views on this subject.

It appears that Tender Face as next of kin was not able to significantly influence the decision to have the PEG fitted for her mother

Long time members may recall my mother’s ‘PEG’ was fitted without consultation or consent

Yet in our case Andrew's wife, as next-of-kin, was very influential. She could not face loosing her husband so when the Surgeon said he would "not ordinarily consider a PEG in a patient with end-stage dementia" Sarah saught alternative opinions in an effort to persuade them to proceed with the operation.

Furthermore, when the PEG detached last Autumn, Sarah positively requested that it be re-inserted, even though, in the opinion of Andrew's blood relatives, it was prolonging his dying.

Although I am not next-of-kin and have no real say over my Brother's future, In an effort to influence matters, I have written a letter to his GP. I have requested either a meeting with him, or better still attendance at a future case meeting regarding Andrew's care. Watch this space....

I am certain that, if he could communicate, Andrew would not want to suffer in this undiginified way. Let's hope the medical and caring professionals are able to consider Andrew's diginity going forward.

Given I have a 50% chance of contracting the same genetic variant of Early Onset Dementia, Andrew's prolonged suffering has confirmed to me that taking out a Living Will/Advanced Decision is the right thing to do.

Kevin

 

[Tender Face]

http://www.gmc-uk.org/guidance/ethi...e_making_decisions_patient_lacks_capacity.asp

Note 76 (f) next of kin’s views and knowledge is not exclusive. When I was in discussion with hospice doctors regarding removal, I was asked if others believed my mother’s views were as those I put forward as best known to me.

It is considering what your brother would have wanted/would want for himself if able to express his own wishes that matters – and how difficult to suggest his wife is not best placed to declare that? I myself leant to people who had known my mother many years to help formulate a decision (should I have been allowed to make it) based on their knowledge of views and wishes she may have made known to them long before I had come along!!!!! …..

Sad to say, this will not be a good outcome for anyone ….. whether your SIL has to accept her husband’s suffering has been prolonged or you and others feel his life has now been prolonged unnecessarily.

If my mother had not had that lucid moment some time later which ratified the decisions made on her behalf (when I was allowed to offer input to them) to this day I could beat myself I didn’t ask for everything possible to be done to keep her literally breathing ……but in how much pain and discomfort she would never have been able to articulate? My only salve if her PEG feed (under the circumstances) was not something she would have wished for herself in the first instance and therefore by effectively agreeing to ‘curtail’ her life by its withdrawal, I was merely vindicating that she had been done an injustice initially in preserving her life artificially which was confirmed to be against her wishes, without the hope of recovery to a better state.

Reminder to anyone affected: My mum’s case was complicated – or simplified – whichever way people view these things - because of a cancer which was deemed (subsequent to the PEG which was meant to serve a finite purpose and then did not) to be terminal as well as her dementia.

I have sent you a PM if you care to wade through it, in case any of it helps …

My thoughts are with you …..

Love, Karen, x

 

[unclekev]

Unresponsive GP

I have now received a response from my brother's GP. In essence, for reasons of patient confidentiality, the GP can only discuss matters direct with the patient or if they are unable to communicate their next-of-kin. Only if the next-of-kin, in my case Andrew's wife, gives written permission can family or friends discuss any matters regarding his care/treatment etc.

I do not believe that my SIL's wish to prolong Andrew's life is in his best interest. Prior to his illness I am certain he would not have wanted the PEG however I have nothing in writing. I feel strongly that he should be allowed to die with what little dignity he has left! Because of this difference of views I feel it is highly unlikely Andrew's wife would provide the necessary written consent to allow me a meeting with his GP.

I feel my only course of action is now to write a much more strongly worded letter to the GP/Nursing Home setting out in clear detail the views of Andrew's blood-family as to DNR, PEG etc. Pointing out that we were firmly against the PEG before it was fitted and that our views, passed to the medics through his wife, were marginalised.

We do have EPOA for my brother. This is Jointly and Severally between Andrew's Wife, his Sister and myself. I do not believe this allows me any say in Andrew's care, only his financial affairs, anyone know any more on this?

Kevin

 

[Sandy]

Hi Kevin,

I'm sorry, but I really don't have any information that would be of help at this point.

My husband has EPA for his mum. As that was the only type of instrument in place at that time, many health care organistaions see that as indicating some kind of authority, but not at all as strong as the new Lasting Power of Attorney for Welfare.

I think the problem is that as you as attorneys are jointly and severally and can not agree, the medics are relying on the next of kin relationship.

I really don't know what other options are open to you. In some cases where a person does not have mental capacity to agree to a procedure, there is a formal best interests meeting:

http://www.pmldnetwork.org/resources/bps_best_interests_guide.pdf

I suppose the other option would be to approach the Court of Protection and ask them to rule on this matter - but I have absolutely no idea how this would be seen.

This sort of thing is much easier to do when the procedure is putting a PEG in, but taking a PEG out may well be seen in a completely different light.

I suppose you could always consult a solicitor who specialises in this area if you wanted a professional opinion.

Take care,