I've been told today over the phone by a doctor that dad will not survive and will die soon. He isn't eating or drinking (as thickened which he hates) and has been delirious over the weekend. I wanted the doctors to know that dad isn't usually like this unless he's in pain, or wants something, but was given short shrift. I was told that they are going to stop his antibiotics, fluids and even his insulin (he's a type 1 diabetic). No questions or asking what I would like. When I queried whether it was right to stop his insulin the doctor got very shirty. On the ward dad is on there is no one I feel I can talk to as the staff are horrible and seemingly hard. They have written dad off and I don't know what to do. Dad might be at end of life but I feel it could have been handled better. Whether it's because he has come from a Home in Wales (where he's been only since December) and the hospital is in England. If they treat everyone life this it makes me shudder!
Karen
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klr31
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Hello dear Karen, how very traumatic for you and your dear dad. I must honestly admit that I felt your dad was coming to the end of his life. That being said, the hospital have a duty of care to your dad and need to be reminded of that it seems. It doesn’t matter whether he’s from Wales, England or Timbuktu he deserves dignity and respect as do you. Please ensure that happens.
The doctor today told me that they were taking dad off fluids as it is building up under his skin (I think). The Home said that end of life care doesn't include giving fluids either.
They should treat your dad with dignity and respect and he should have some kind of hydration as my own mother did when she was dying from the after effects of a stroke/pneumonia. Hope dad’s treatment improves. Xxxx
Hi Karen I was so saddened when I read your letter. I think sometimes professionals can get carer fatigue which makes them act quite callously. Also, health staff are usually under intense pressure because of staff shortages. This said, their behaviour is really upsetting at this crucial time for you and your father. It is a time that we need to try to get right both for the person who is dying and for their relatives who have to live with the memories of those last days.
Every single person needs to be given respect and dignity no matter where they come from. I would ask to speak to the palliative care team who would have experience and expertise in end of life care. Also, if you are being treated in this off hand manner, you can always ask to see the PALS team who should take your concerns seriously and act on your behalf with medical staff.
The doctor intimated today that they would like to get dad back to his nursing home. Online the hospital palliative care looks good but do you really move a dying frail man?
Hi Karen, as it sadly looks as if your dad's coming to the end of his life the hospital or nursing home should at the very least make sure he's comfortable, not in pain or discomfort, and hydrated even if he's unable to eat, can't add much more other than to say you'll be in my thoughts over the coming days xxxx
Hi Karen, I’m so sorry to hear this moment has come. You can’t prepare yourself for it and I can understand that you feel you are in a flat spin with difficult decisions to make. On the face of it the hospital doesn’t sound as if it’s being very compassionate, but on the other hand you’ve received this very shocking news out of the blue and it might be that you are getting a harsher impression of what won’t be done for your dad now. It probably needs a little time to sink in and then you can go in to discuss after a bit of thinking time.
It’s true that in some instances of the end life pathway even fluids are withdrawn but if at any point you feel this is causing undue distress and cruelty you should insist that his mouth is at least regularly moistened. You may find though that dad reaches a point where he doesn’t even want that.
In any event I am so sorry this sad time has come. I hope you can find the strength to deal with it. It’s heartbreaking I know and my own heart goes out to you.
Hi Kir31. Had bad experience ourselves with hospital when my hubby's mom was at the end, so sympathise with you so much. Tell them the Liverpool Pathway is no longer in use and you wish at least to be able to moisten his mouth. Our district nurses don't advocate giving fluids intravenously towards the end, and to let nature take its course, and I wouldn't want to prolong my mom's life if it will cause her more suffering. However I think we should let our loved ones decide if they want a drink or not, and not simply withdraw it when the hospital deem it necessary. I think I may have posted about my mom's current state of health but not sure as I am tired from getting up twice last night to turn her. Her bedside is stage 4 and she is on antibiotics, so this could be the start of the end? I feel for you and your dad, and agree you should talk to PALS about your concerns regarding his treatment. Just before my mom in law passed away we had scheduled a meeting to discuss he care and get her transferred to a local hospital, but unfortunately she left us on the day the meeting was to have taken place. Thinking of you x
Hello Karen, how tragic to read such a letter, please get in touch with Pals or Macmillan nurses at least they can offer you support. The end of life is not very nice sadly especially for the loved ones. Your father is entitle to be helped to die with dignity and no suffering i.e pain releif and basic drugs to eliviate symptoms.These wards generally are understaffed not much time for relatives or patients needs but it should not be like that and having been through that myself its not a very nice feeling, hope your father does not suffer for too long and is at peace soon, my thoughts are with you and your family at this very stressful and sad time. Spend as much time as you are able with him as that time is precious and short.
Dad's swallowing is not good so I don't think fluids will be offered. I really don't think dad's insulin and blood sugar testing should be stopped but I feel I have no power to argue. I'm hoping to contact Palliative Care today as online it offers a lot but whether that is the same in practice.
Get in touch urgently with CQC and Pals for the hospital. End of Life care should be discussed and agreed with the relatives, not presented a s a Fait Accompli by a doctor One of the reasons for stopping the Liverpool Pathway was to stop this happening. the Doctor would appear to have lost sight of your Father's humanity.
Talk to someone in the PALS office who will listen to your concerns and know of someone that can give support and best advice at this time. My thoughts are with you at this distressing time.
This attitude and lack of care is unacceptable by the medics. You need to urgently contact PALS (Patient Advice and Liason Service) at the hospital and discuss your concerns, you may even have to consider a formal complaint if necessary. Also ask to see a senior clinician caring for your dad, including the matron and escalate your concerns. I had to do this for my mum and I am a nurse, but mum was in hospital 100 miles away!
Do you have Lasting Power of Attorney for Health and welfare decisions for your dad, if so invoke this legal right, now, and inform the ward and hospital of this. Here is some information from Age UK:
You and your dad should be treated with respect, dignity and be kept fully informed about his care and be fully involved in the decision-making process. The medical and nursing staff should comply with the NHS 5 priorities of care (see below):
Hi klr31 and I'm sorry for your present circumstances regarding your Dad and his standard of care at the hospital. My own mother after suffering a huge stroke was unable to eat or drink so was fed through a nasal tube and allowed to have a sponge on a stick placed on her lips. It was so distressing and she was moved into a hospice for her final days. This was a calmer environment and 1 or even 2 nurses to each patient depending on their needs. Please look into the possibility of taking your Dad to a NHS hospice for palliative care. It may make him more comfortable which then in turn allows you to stop "fighting" for his dignity.
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