My father had a heart attack having gone to a hospital after having chest pain. He had thrown up violently twice before this in the space of 12hours and it was deemed as possibly heartburn. He was out of breath prior to this. The GP failed to make contact as well. A & E were going to dismiss him with an infection when he suddenly not long after had a heart attack out of the blue. After 5 cycles of CPR he still had a shallow pulse. He had angioplasty done and was on a ventilator with another artery needing a stent at some point. I find out after all these years he has coronary heart disease. There has never been any such diagnosis before despite him going unconscious 3 times in September last yr and A & E concluded they could not find anything. He has not woken up after the procedure and the scans show diffused hypoxia. He got aspiration pneumonia due to the tube whilst at the hospital. They have refused to allow us to take him home and care for him and stated his needs are complex and he will need a care home that will be so far to get to. They stated they would extubate him and anything could happen and sometimes people last few hours to days to a week. After extubation he was able to swallow his phlegm although unconscious. That same night they removed his feed. By the morning the feed was now disconnected. We were never told about this. They explained why after. His mouth was dry, he has been in AC where even staff wear hoodies thats how cold it gets, and he had no hydration. Was told people can live without water for a week. But hes 85yrs old and he has been left with no hydration in his mouth, the next day the nurse did not once attend to do suctioning till we requested her whenever he needed it. Then i found his morphine and midzoplam driver was switched off from when i last saw at 12pm till 749pm. So he was left with nothing for endless hours. I raised the hydration and it was authorised from 1-2pm but not given till we asked the nurse are you going to give him water near to 6pm.
They use an excuse that my fathers needs are complex yet they left him to die without hydration and no meds and no checks. So why cant i take my father home if they are not even checking him for his āComplex needsā. Clearly there arent any if hes been left there to die and they are only going to check to see if hes gone. Despite trying to fight this, as his other organs are functional they said he is dying. Despite wanting him to be at home where he can have better care its been denied. Its absolutely heartbreaking trying to fight this. Hes been moved to an end of life care ward where he gets checks every 2hrsā¦so he can potentially die from the phlegm build up in his lungs. How is this all ethically and morally ok? Its been slowly breaking me watching him in this state. This is taking away his dignity. This is morally wrong that im watching his tongue dry up and become crusty and his lips are severely dry, his tongues got an ulcer and hes getting weaker. Its heartbreaking how this is supposed to be the norm. Apologies for this being long, its just very hard to see and deal with.
Hello SueF1, they have said we canāt take him home, his needs are too complex. Also i dont know whether i can just arrange for anything to take him home. I have read up DOLs too whther they can enforce that in these circumstances
@Manisha
Iām so sorry for all you are going through. It sounds absolutely horrendous
I donāt understand why the hospital canāt sort palliative care at home. They certainly donāt sound as though they are being empathetic to your dads and your needs
Do you have POA over his health.
No i dont have POA, its so heartbreaking to see him getting wraker and weaker and i have no idea how to go about this. The nurse mentioned i can ask the consultant in this new ward about csre home and taking him home. But the nurse in charge said a day ago you do know how long he will be here for? I said sorry what do you mean then understood she meant how long he will live for, but by then she replied 2 to 4 weeks. I ca t believe how they speak to you with no compassion, just glad my mum does not speak english and did not hear the rudeness. Is there any need to keep reminding me that my dad will only be around for few hours or im gonna watch him for weeks dying?
Dear @Manisha,
I can feel your distress and feelings of powerlessness as I read what you have written. I dont know if any of the following may helpā¦and I also know that it takes a lot of energy to do these things when we least have it.
If the hospital has a Patient Advocacy Service then try and speak to them, not only about your dad but about the lack of compassion you have experienced in their communication with you.
Ask the senior nurse for the name of the consultant with overall responsibility for decision making in relation to your dadās care and treatment. Ask for a meeting with and also that you want to read your dadās care plan. Tell them that you wish to be informed and meaningfully involved in the decision making and ask them to record your request and wishes. Ask if they have a hospital Ethics Committee and for the name of the Chairperson and contact details. All my good wishes, Ellen
@Manisha
I would demand to see the consultant and bring in PALS.
You need a care plan in place asap to get your father home where he can be looked after in his final days with care and love.
Itās not easy when you are obviously so emotional but be absolutely resolute in what you and your family want for your dadā¦.and what his wishes areā¦
I wish you the best in your quest to get him homeā¦
My heart goes out to you @Manisha I would certainly get PALS and the palliative care team involved. One possibility that crossed my mind was whether he might be able to be transferred to a local hospice? Then surely those complex care needs could be met by the trained hospice staff, plus he will get treated with the dignity and care he deserves. That also would take some of the pressure off you - i became mums carer for the last 11 months of mums life and it does alter that parent/child relationship. Plus hospices are great at supporting the whole family at such a heartbreaking time. Just wanted to flag this as a possible option. I wish you the best of luck
I will do this tomorrow, as its all happened on Friday, iv hit the bank holiday weekend and could not even get hold of any solicitors even! Pals were shut too till tomorrow. I tried so hard on Saturday to find a legal route but after several hours found i hit a brick wall, felt so defeated, iv always done my best to help my dad but felt failed this time.
I told the palliative doctor this on friday about mums wishes to have him home and cared for but he dismissed it as dad has complex needs! So palliative care were not abit helpful. He even said they do not hydrate the patientā¦iv read mouth care is a must in end of life care. By this evening, my dads lips, tongue are all worse for wear snd the back of his throat has dried up secretions and build up behind his throat.
Im so sorry to hear that. Sending u lots of love and strength to get you through those difficult days. I helped look after my father from childhood as he was disable and as he grew older he became a child to me. So i do understand how difficult it must have been for you. I will endeavour to make calls to hospices later today thank you. It was the Palliative team that said we could not take dad home on friday due to his needs. His needs are not complex, he simply would need repositioning severel times a day and suctioning.
I can only hope that the chat later today goes well!
It sounds they are not taking into account the wealth of experience you already have in caring for your Dad. It breaks my heart to read some of tales on this site about how people are treated in hospital. I really hope your meeting goes well
@Manisha I echo @Ally6 comments and good wishes for tomorrow. Also, will you have anyone to support you at the meeting and to take a few notes on action agreed and any decisions made? I know from experience how important this can be.
Firstly, Iām so sorry to hear this is happening to you.
This sounds a little like the end of life care that my Mum received at the very end of her cancer battle. They withdrew all food and fluid from her except a morphine drip. They said the name for this is āthe Liverpool Pathway.ā It could be worth asking if this is what they are doing and also what his ācomplex needs,ā are exactly and what they are doing to meet those needs. It seems incredible that they wonāt allow you to take him home. As others have suggested, it could also be worth asking about PALS at the hospital heās in.
Wishing you all the very best.
Thank you all for your support it means alot to have someone push you as it can be so draining when you get the courage to fight and you hit a wall. You get back up to fight and you hit a wall againā¦I had the meeting, unfortunately palliative and doctor said they do not believe he is stable to travel in an ambulance and he could pass away during the travel. They stated they would keep assessing him and see how he is, by then im worried it will be too late. They have said that they will remove his water flush feed line as it is a risk to send him out of hospital to a home with it. So this means he will be released home and will not be able to be given water via his mouth as he has become weak and cannot swallow probably because of all the mucus building up and drying up too in his throat.
I jad to complain to PALS re his mouth care that the doctor and palliative care promised would happen, only to wait 3 and a half hours to see they didnt actually do anything and had to be reminded abt my dads water feeding.
The nurse in charge did not appear happy, however she found clumps of dry secretions building up in front of his tonsils which she cleared out then apologised for. She even funnily did deep suctioning to find he was deeply congested despite saying no to doing deep suctioning earlier. Its sad how they do what suits.
Anyone can tell me what else i can do as they have said even if we are adamant to take him home they can and will refuse if hes not stable. He is not connected to anything other than a driver with meds mentioned above. Mouth care should be done every 2hrs is hardly done so he has crust on his tongue after few daysā¦its so sad to see his mouth is just got a build up.
My heart goes out to anyone thats dealt with this and is going through this. Its one of the toughest things to deal withš¢
Has anyone had a similar dealing how do i bring him home?
The Liverpool Care pathway was deemed not right and were they not trying to stop this method. Yes you are right it does seem like that is what they are doing. I did ask what they meant by his organs are shutting down as they were fine before extubation and how they know theyare shutting down. I argued if they believe this will happen why are they doing this to speed them up in shutting down by not giving him food or hydration but they argued he doesnt need anythinas he is lying there and anything he gets put in his belly will stay there and build up overtime.
His complex needs are simply he will need to be turned every few hours. There is nothing more than a usual care required to cleaning him, cheking for any stools, and apparently we will not be provided any means to do suctioning.
Im sorry to hear of your loss and thank you for reaching out and sharing
@Manisha you are doing everything you can to advocate for your dad. You are rightā¦the Liverpool Care Pathway was discontinued due to very real concerns about interpretation and implementation. Have you asked to meet with the CEO and Clinical Director? Ask to see your dadās daily records and test results to see the care and treatment plan. Try and record each interaction you have if you can. If I can think of anything else that may be helpful I will write again.
I havent no, iv only spoken to PALs for complaints for lack of oral care which is basic, and the palliative consultant and ward doctor. As for my dads daily records and treatment plan - do you mean how the nurses are taking care of him? He is on a driver only that requires a 24hr change, and just suctioning as and when followed by 100ml water every 4hrs four times a day. He is only getting re positioned and thats it. They are doing no other tests on him and wont be looking to do anything.
So the consultant said today that he is not stable due to his breathing, but they will allow him when he is stable to go homeā¦i asked what do you mean by stable? What will he need to be like to be stableā¦she said alert, talkingā¦I said well that isnt going to happen in my dads case due to the hypoxia so how will he then be stable? She said again people that are alert or talking can go homeā¦then she said if his breathing gets calmer and better but his breathing is likely to deteroriate as time goes onā¦
So basically they are saying he wont ever cone home and also as he needs suctioning to help breathe there is no way of been able to do that in the community
When my mum was in hospital she was neither alert nor talking and we were told she possibly had hours to live and yet we were allowed to bring her home, so what theyve said to you makes no sense to me. When the palliative care consultant examined mum she was practically comatose - i remember them lifting her arms up and they just dropped by her side when they let go. She wasnt communicating or even aware of other people. Oh Manisha I really feel for you. Would the hospice route be a suitable alternative for the suctioning?
I would certainly get PALS and the palliative care team involved. One possibility that crossed my mind was whether he might be able to be transferred to a local hospice? Then surely those complex care needs could be met by the trained hospice staff, plus he will get treated with the dignity and care he deserves. That also would take some of the pressure off you - i became mums carer for the last 11 months of mums life and it does alter that parent/child relationship. Plus hospices are great at supporting the whole family at such a heartbreaking time. Just wanted to flag this as a possible option. I wish you the best of luck 
