Nil By Mouth = End of Life?


#1

Hello, My father has Lewy Bodies and Parkinsons (8 years ago). He was admitted to hospital 1st of Aug with a Sigmoid Volvulus, given morphine as he was in great pain.

He had a procedure to untwist his bowel but after the procedure was very drowsy. He in on Sinment 125mg x 3 per day. Because he was drowsy his oral meds could not be administered. Eventually he was given disposable parkinsons medication (dispersible version of Sinement). However he has remained very drowsy, does have swallowing problems but was eating solid/softish foods before hospital admission (family members were assisting at every opportunity). We fed him soups, jellies, custards, yoghurts, porridges, semolina in hospital.

The speech and language therapist assessed his swallow and ascertained that it was unsafe. He was then Nil by mouth for 3 days whilst before they inserted an NG tube initially for a proposed period of 4 weeks. Then he fell ill again (internal bleeding) which meant the NG tube was taken out for another 3 days. He is quite week. His PD meds have been changed to the Neuprau patch 6mg.

I was on my own with my Father when the DR asked how Dad was and suggested the Palliative care team get involved as it would be kinder to keep him comfortable in his last days. Fluids and the NG tube would be withdrawn.

I said that the plan was to put Dad on the NG tube for 4 weeks to see if he gets his stength back with a view to assessing his swallow. I was told that frankly Dad does not have 4 weeks and it would be kinder to let ‘nature take it’s course’. I said we must try as a week before Dad was talking, responsive and still engaging with us. I could not believe that in 2 weeks my Dad has declined so rapidy and now taling about preperation for end of life.

I think the trauma has affected Dad - his speech is now very slurred but he still recognises us.

In the end it was agreed the NG tube would be reinstated but it took another day. Then the NG tube was pulled out and Dad had no feed for nearly 2 days as no one could get hold of the consultant radiologist to see (via x-ray result) if the tube had been re-inserted properly. Dad got very weak and his stats dropped rapidly and he has been given lots of fluid which resulted in fluid overload and his hands and feet have swollen. Therefore fluids were reduced to 1 bag every 24 hours and he was then put back on his fluids on the usualy 8 - 12 hourly rotation. The go ahead was given for feeding to begin late Sunday 19th of August but Dad has been very drowsy since then.

Palliative team has been called in with a view to ‘manage his pain relief medication’ not for iminent EOL. But still the end of life push continues. I am convinced the switch to the Neuprau patch is causing the drowsiness and don’t know why there were not considering administering his previous PD medication (Sinemet) via the NG tube.

His NG feeds are being continued but I am concerned about a subseqent swallow assessment. He has been extremly drowsy - clinicians seem to think that drowsiness = imminent end of life but I disagree. We are made to feel that we are being ‘delusional’ and told that often such patients ‘rally’ but there is only one result.

Dad was up today (27th of August) squeezing my hands, attempting his arm exercises with me, itching his nose and playing with his sqeezy ball.

I feel that the clinicians think EOL imminently is a ‘foregone conclusion’ and it takes a lot of work to battle against these ‘conclusions’. The weekend on call Dr decided not to continue fluids intravenously and that Dad is getting sufficient hydration by the flushes he is getting when paracetamold and other meds are syringed via his NG tube. He also said that he would not take bloods. Luckily a kind Ward Sister took the bloods with no issue. He is currently being assessed for an Albumin deficience and is beng given powerful vitamins (B1, B12 etc).

I feel that my Dad need to recuperate - he has been through a lot but that he may not be given enought time to do so. I will be asking for the Parkinsons/Dementia team to review.

I feel very scared for my Dad at the moment. Family are with him around the clock in the hospital.

Has anyone had a similar experience?

D


#2

Hi Dpal,
I have experienced the same as you with both my parents.One,my Mother,who is still doing well(has Dementia)in the care home.The other(my Dad),who is no longer with us.
Though neither of them suffered with parkinsons,i do.Having gone through similar experiences as you describe,i dread to think what things will be like if i reach the latter stages of parkinsons.
I would like to think that my family would fight my corner as i have done for my parents and you have done for your Father.Yet,it is such an uphill struggle,when “so called experts/doctors/nurses/specialists are advising"end of life care”,much to our disbelief.It is as if the are taking the easiest,most cost effective option.Because they assume with the stats they have in front of them,that it is the kindest/humane thing do do.This,without knowing the exact history and function of the person being treated or even considering the wished of that person or their family.
In the case of my Mother.She was admitted in 2013(from the care home)with dehydration.Plus the existing dementia.To cut a long story short,the advised withdrawing fluids,let her slip away,end of life care.I insisted that they continue fluids,especially as she was not in discomfort.She is currently still doing well in the same care home 5 years later.
In the case of my Father,I had Two bouts of what you have had to endure.The second time,i was unsuccessful in bringing him home.With one thing and another he caught an infection,also sepsis and although i tried.In the end had to watch him slowly slip away.Bitter,because they had finally got their way and ridden with guilt,because i couldn’t save him.They were so incompetent in so many areas and even though putting in a complaint and getting social workers on the case and going through PALS at the hospital(whilst my Dad was still alive).It was like running up a greasy slope.Each time i thought things were set up to bring him home(the long wait for the social workers to sort out the after discharge care plan),bang!another infection/setback.
That was over 2 years ago,and i haven’t really scratched the surface on the details.I really don’t think i am still over it,all my grief is still locked inside and i don’t think i will ever be able to trust hospitals again.
Forgive my outpouring,i have tried to contain myself and keep things as brief as i can.Needless to say,i am completely on your side,totally empathise and am full of admiration for what you are doing for your Father.
Stay strong,
Take care
Titan(John)


#3

Dear John,

Thanks for your story. Do you have an advocate/family member who can support and fight for you especially if you reach the later stages. I find that family members/supporters will question - Consultants and medics know a lot but they are not Gods. Each patient is different and should be seen as an individual.

We had a meeting with the consultant yesterday who has concluded that my Father is at End of Life because of his severe fraility and the Lewy Bodies (apparently not due to the Parkinsons). His stats are fine though, he has no infection. I noticed they had taken him off fluids on Saturday (25th Aug) and are maintaining that he is getting enough fluids via the NG tube feed. However we have countered this as his BP is starting to go down and he is less responsive. Consultant wanted to take the NG tube out we said no and had a family meeting. We have been documenting everything because so many mistakes and miscommunications happen which really does impact on the life chances of our loved ones in hospital. At the meeting because we had been documenting everything they agreed to leave the tube in for another 7 to 14 days. His Parkinson’s medication has been reviewed and he is back on the Sinemet. All we need is time and I don’t know how much we have left. I know that my Father if given some time would slowly start to make a recovery. The next battle is the swallow test - we have been told that if his swallow is severely impaired that it would be end of life as he would not be able to take in enough nutrients for survival even with hand/comfort feeding. He was eating before he was put on nil by mouth on the 9th of August and I think he has been weakened.

I must say, seeing how the elderly are treated at this stage is an eye opener especially if conversations around ‘making your Dad/Mum/ etc comfortable’ come up. The issue is that in most cases the family would know when a loved one is at end of life, however if your loved one still shows a will to live I think we must do all we can to fight - even if down the line we know what the end will be. You have to fight at every turn and know your stuff. Our main aim is to get my Father out of that ward so that if so be it he can recover or die at home.

Kind regards,

D


#4

Hi Dpal,
Agreeing with all of your reply,i hope,if at all,that for myself,this situation is a long way off.Considering that i was diagnosed in 2009.My Neuro thinks that i am doing amazingly well.I would like to think that my corner would be fought,but people differ under stress.Some just bow under consultant advice,viewing the earlier end as a relief from suffering.
I view it,that we only have one life.If a person cannot fight their own corner for whatever physical or psychological reason.Unless going against their specific wishes.Their right to live should be fought for until"the last breath".
Whether care home environment,or home environment.This is a much more suitable and safer place to be for people in such a situation as our parents.There is less risk of infection,more stimulating,and less stressful all round.In hospital,the nurses and care team,no matter what they say.Are under ever increasing restrictions and time constraints.Unfortunately,this impacts on the level of care and diligence they can provide.I tried desperately to bring my Dad home to the care home to be with my Mum.On one occasion, i got him to the care home for 1 night,though he had to get rushed back in because the hospital sent him to the care home dehydrated.He never got to be back with my Mum.This was from originally still living at home independently before admission,with carers 2 times a day plus myself.
From full function to how my Dad ended up was heartbreaking.We both used to visit my Mum at the care home up to his spell in hospital.I always thought my Mum would be most likely to go first,as my Dad was so fit before his hospital admission.I know the time will come that i will be back in the same situation as you are in again.With my mums advancing dementia,the ethics of the situation will again come in to play.But i certainly do agree that out of hospital care is the best option.I apologise for the rushed format of my replies.
I wish you all the best
Titan(John)


#5

Hi @Dpal,

First of all, I would just like to extend my deepest sympathy to you are your family. I can’t begin to imagine how devastating it must be to watch your father’s health deteriorate so rapidly.

I appreciate that this must be incredibly difficult for you, but neither you nor your family need to go through this alone. We have a really supportive team of advisers via our helpline who would be more than willing to speak to you about this and to provide you with the support you need during this time. Please give them a call as soon as possible on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm. Alternatively, if you’d like us to contact you, then please private message me your contact numbers as soon as possible.

Please let us know if there’s anything else we can do to support you.

Our thoughts are with you and your family.

Do take care,

Reah


#6

Hi @titan,

Thank you for showing such great support to Dpal and I’m really sorry to hear that you’ve experienced similar circumstances yourself.

The issues surrounding death and dying are not easy to think about and so if you ever need emotional support, you are always welcome to contact our helpline as well. We also have a lot of information on the type of help available to you on our website. You can find this information here - https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling

I hope this helps you in some way.

Best wishes,
Reah