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My 80 year old mother had a large brain haemorrhage 8 years ago. She lost all use of her right side and suffered Apraxia and Aphasia. She has constant bladder infections and has just recovered from severe Urosepsis.


Unfortunately, she has now lost her swallowing ability. She has been fitted with a nasal feeding tube. It has a bridal because she was trying to pull it out. This was not the families decision but the consultants. She is now fit for discharge and they want to send her home. We feel this is cruel given her complex needs, she doesn't want to continue living and has felt like that for few years now. The Consultant mentioned withdrawal of the tube and mum going onto palliative care which we considered the kindest option. He then decided against it.


What would be best for my mum. Advice would really be appreciated

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https://www.healthinaging.org/sites/default/files/pdf/ChoosingWiselyFeedingTubeAGS.pdf
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Kevangie Feb 10, 2024
Thankyou for that x
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I would not stick with this nasal feeding. My mom is the same age and I would consult hospice if it were her. I would also not allow her to be sent home. With or without the tube I assume she will need more care than is humanly possible in a home setting.

So sorry that your mom is nearing the end. In some instances, I would consider it a blessing. Like I would with my mom.

Hugs.
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Kevangie Feb 10, 2024
Thankyou x
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Who is this consultant and why are they making decisions for your mother?

I can't imagine keeping someone alive with a nasal feeding tube it sounds cruel and barbaric and completely against your mothers wishes.

It sounds like mom would not want to be kept alive this way based on the information you provided above. It is too bad mom did not put these wishes in writing or have a living will made up. It would have saved a lot of heartache for your mother and the family to have to watch her continue this way.

I hope you are able to get this consultant on the same page as your mother and the family and let her go with peace, comfort and dignity.
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I wouldn't keep up the feeding tube. Her quality of life has little chance of improving. She has apraxia and aphasia; those can't be fixed.

Your mother has expressed her wishes to you, and you should follow them. Don't allow them to send her home. Insist on her being in a place where 24/7 caregivers can take care of her. That would leave you free to be there when you wish, soothing her and telling her she is loved. The palliative care or hospice nurses will be there to help and guide you.

Fire the consultant. I don't know who that might be or why they'd tell you upsetting things such as mother needing palliative care but "oh wait, I've decided against it." Whoever in the family is appointed to make end-of-life decisions for your mother should do so now.

I'm very sorry for your sadness and for your mother's situation.
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If she doesn’t want the tube and either does the family, she shouldn’t have one.
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Yes. Now would be the right time.

I as an RN SOOOOO fear some well -meaning family member allowing a feeding artificially that ALL artificial administration of hydration and sustenance is forbidden directly and explicitly in my Advance Directive.

No one gets a feeding tube in the USA without family permission, so I am unclear how this happened. Consultants can order it but in all states I am aware of the family must approve the move. It can sometimes be tricky to get them removed once placed.
I would hope, knowing how she lived her life that the family member who is serving now to make decisions for her understands that this is not what your 80 year old would want (unless she indicated otherwise).

I am assuming YOU are POA in charge here. This decision will now be made by whomever is in charge of your mother's medical decisions.

I would recommend the doctors suggestion for palliative care, but in truth that will quickly move to Hospice without any intake.
This is going to require sedation as the body organs shut down, causing confusion and agitation.

Good luck to your Mom and to your family in this trying time.
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What's a "consultant" and why are THEY making decisions for YOUR mother? If anyone kept me alive for 8 years after a large brain hemmorage and now shoved a horrible NG tube up my nose to FEED me, taking away the last pleasure I had left in life, I'd have a huge fit.

Mum does not want to continue living. THAT is the only person you need to "consult" here! Fire the consultants and hire hospice immediately. Remove that horrid NG tube from poor mums nose and allow hospice to keep her comfortable as nature takes its course.

I'm sorry you're going thru such a thing. May God bless you and help you thru the process, with acceptance and peace.
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I have nothing really to add except to say that those who have said fire the consultant and get rid of the tube are right! Your mom deserves the right to a peaceful ending. Thank God you understand this because you must fight for her not to have this indignity thrust upon her. I am sorry that your mom has suffered so and that you will soon have to say goodbye but I am also buoyed to see you doing right by her. Hospice is a wonderful thing and it’s time she experienced the peace she has earned!
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I am very curious what a "consultant" is and why they would over rule the family wishes.
Does your mom have someone that has been appointed to make decisions for her? Is that person the "consultant"? If not I would think they should have no say in the matter.
Is your mom able to make decisions and make her decisions known? That might be a very important point here.
Has mom ever signed a POLST or DNR indicating if she wants extraordinary measures taken?
If mom can not make decisions or make her decisions known have you or any family member had discussions with her in the past as to what her wishes are.

Gut reaction is if you can not care for mom at home to discharge her to home would not be safe. "Unsafe discharge" are the magic words.

I am also wondering why the "consultant" would recommend removing the NG tube and placing her on Palliative Care. At that point she should be placed on Hospice.

I am also guessing (have not read your profile yet) that you are not in the USA. So I do not know if there are different terms for medical personnel that we would use in place of "consultant"

My honest opinion...
Hospice
Hospice WILL take someone with a NG tube and will maintain it. (if the NG is in place PRIOR to Hospice admission. They will not do an NG after admission.
Use the guidance of the Hospice Nurse and Doctor as to when to remove the NG tube.
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I am so very sorry you and your Mom are going thru this. Are you in the USA? For the most part many of the answers you receive here are based on US healthcare practices. I have been in senior living/heathcare for over 15 years but I don't understand the terms consultant as it used here. What is a consultant and who is he? Generally, the hospital/medical care facility works with the family (or PoA, if there is one) to do what is best for the patient/resident and meets their wishes. Does your Mom have an Advance Directive which may indicate that she doesn't wish to have heroic measures taken to preserve her life? I'm assuming that she i in some type of medical facility but I could be wrong.

There are "consultants" in other countries whose opinions outweigh the patient and the family but really would appreciate more information on what the consultant is and where he is located.
Again, I hope you can convince someone to come to your family's and Mom's aid and help you all out of this. A bridal nasal tube is not fun!

Please keep us updated.
Peace!
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Did Mum not have an Advance Directive in place? Most people specify no feeding tubes. You need to check her paperwork. Sorry you have to face this.
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Consultants are some doctors in the UK.

"Consultants are senior doctors that have completed full medical training in a specialised area of medicine and are listed on the GMC's specialist register. They have clinical responsibilities and administrative responsibilities in managing SAS and junior doctors." -- British Medical Association

It's NOT like how a consultant is an outside party, like in the US. I THINK it's like an Attending Physician, here.
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Kevangie: The NG tube should be removed and your mother be placed on hospice care.
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OMG this feeding tube is cruel. Please allow her to leave this world with palliative care.
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Ask to speak with palliative care and hospice care. Get input from these consultants before she is discharged. Have a family meeting about these decisions after you get this information. If you decide to go the feeding tube route, ask the doctor to have one placed into her stomach - safer and easier to use.
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