Dying in hospital

ClmAlfie

At this moment, my father is in hospital and is dying
Has been diagnosed with cancer 3 weeks ago and went for his chemo. Since then, he has rapidly decline to the point he is barely eating and drinking. He has given up. He also refused to have feeding tube. He's not in pain and doesn't have dementia. 5 weeks ago he was able walk and talk and now it's very distressing to see him in bed unable to walk or talk as he's so very weak
We're only allowed to visit him twice a week cos of the hospital protocol and its very upsetting for us as we want to go in and care for him everyday.
When we were told that he has cancer, we were told there's hope and can be cured and now it's looks like it won't be the cancer that's going to kill him
It's like they are leaving him to die
Can they do that?

PS if it's not in the right forum, can you move to the correct one please

spodoinkle

ClmAlfie wrote: »

At this moment, my father is in hospital and is dying
Has been diagnosed with cancer 3 weeks ago and went for his chemo. Since then, he has rapidly decline to the point he is barely eating and drinking. He has given up. He also refused to have feeding tube. He's not in pain and doesn't have dementia. 5 weeks ago he was able walk and talk and now it's very distressing to see him in bed unable to walk or talk as he's so very weak
We're only allowed to visit him twice a week cos of the hospital protocol and its very upsetting for us as we want to go in and care for him everyday.
When we were told that he has cancer, we were told there's hope and can be cured and now it's looks like it won't be the cancer that's going to kill him
It's like they are leaving him to die
Can they do that?

PS if it's not in the right forum, can you move to the correct one please

Probably not an after hours post but generally when there is no hope of recovery, a hospital can only offer to make someone "comfortable", theres not much else they can due with a terminal illness, I've been in that position twice with two close relatives and now I have a cousin with a brain tumor that nothing can be done with so he too is now being made comfortable

fritzelly

ClmAlfie wrote: »

It's like they are leaving him to die
Can they do that?

Sympathies for your situation but that is a strong allegation to make

Sometimes people just give up the will to live and are happy to do so

If and when the time comes you will not be excluded from saying goodbye

PalLimerick

It's the HSE and they are horrible most of the time, maybe not all the staff but their set up and rules are in humane.

If your Dad is near the end with little chance of recovery get him in to a Hospice, they will offer great care and you and your Family will be allowed with him at all times. Talk to his Consultant to see if he is near the end.

I know how you feel and offer my sincere sympathy to you and your Family.

3DataModem

PalLimerick wrote: »

It's the HSE and they are horrible most of the time, maybe not all the staff but their set up and rules are in humane.

If your Dad is near the end with little chance of recovery get him in to a Hospice, they will offer great care and you and your Family will be allowed with him at all times. Talk to his Consultant to see if he is near the end.

I know how you feel and offer my sincere sympathy to you and your Family.

+1 to this. The Hospices have great carers. They can also assist when a patient is at home in the final days and weeks.

Peregrinus

I'm really sorry you're going through this.

If your father is not demented or otherwise mentally clouded, he can't be compelled to accept treatment that he doesn't want. This includes a feeding tube, obviously. Is he declining other treatment?

Are the doctors telling you that he is dying, or is this your own reading of the situation?

If the doctors think he is dying, they will be willing - perhaps even keen - to talk about transitioning him to a palliative care regime, either in a hospice, if a place can be found, or in the hospital. As he has his wits about him, this is a conversation in which he has to be involved.

If the doctors think there is treatment which could or would save his life, they will be reluctant to move to a palliative regime - it is unethical not to provide lifesaving treatment that is available.

It's possible that your father is depressed - not an unnatural reaction to a shocking diagnosis, burdensome therapy and virtual solation from his family all happening more or less together. Some counselling might assist him in processing what is happening to him and help him to be more engaged with the decisions he needs to make.

Also talk to the doctors about what would have to happen before your father could be discharged home. Going home, if that is possible, would very likely improve his form. And if there's a realistic path to a home discharge your father needs to know that; it may be that he has given up on it, or is afraid to hope for it.

Wanderer78

ClmAlfie wrote:

At this moment, my father is in hospital and is dying Has been diagnosed with cancer 3 weeks ago and went for his chemo. Since then, he has rapidly decline to the point he is barely eating and drinking. He has given up. He also refused to have feeding tube. He's not in pain and doesn't have dementia. 5 weeks ago he was able walk and talk and now it's very distressing to see him in bed unable to walk or talk as he's so very weak We're only allowed to visit him twice a week cos of the hospital protocol and its very upsetting for us as we want to go in and care for him everyday. When we were told that he has cancer, we were told there's hope and can be cured and now it's looks like it won't be the cancer that's going to kill him It's like they are leaving him to die Can they do that?

I'm very sorry to hear your story, loved ones have died from this awful disease, including my own father, it's a horrendous death, I wish you and your family the best

GalwayGrrrrrl

Peregrinus wrote: »

I'm really sorry you're going through this.

If the doctors think he is dying, they will be willing - perhaps even keen - to talk about transitioning him to a palliative care regime, either in a hospice, if a place can be found, or in the hospital. As he has his wits about him, this is a conversation in which he has to be involved.

If the doctors think there is treatment which could or would save his life, they will be reluctant to move to a palliative regime - it is unethical not to provide lifesaving treatment that is available.

It's possible that your father is depressed - not an unnatural reaction to a shocking diagnosis, burdensome therapy and virtual solation from his family all happening more or less together. Some counselling might assist him in processing what is happening to him and help him to be more engaged with the decisions he needs to make. .

I’m sorry to hear about your Dad OP, I went through a similar situation with my own relative and it’s not easy on anyone.
I 100% agree with this post - ask the hospital team to refer your dad to palliative care, ideally at a hospice. It will be easier for visiting and more comfortable than a busy hospital.
Avoid anyone talking about hocus pocus food or herbal “cures”.

Goodigal

So sorry to hear how sick your dad has become in such a short space of time. As others have suggested, if you can get him home with the support of the hospital and hospice care, it would let you all spend more time with him. Wishing you strength through this very tough time.

spaceHopper

Is he in a public or private hospital?

Ask for meeting or conference call with his team. You will what his consultant or their reg, a nurse who has been caring for him.

Ask for an over view of his condition and what it best for him now. Is a cure possible, is there anything that can be done to give him more time with a decent quality of life. Or are you looking at end of life care? Don't go on the attack everyone there wants what is best for your father. My experience with the HSE and private hospitals is that the people are generally good and want to help.

Tell them you feel that he needs more family contact as he's declined without it. If he's dying can he me moved to a hospice or even home it that is an option.

Have you spoken to the Irish Cancer Society they would be able to advise you better than most here.

Sorry you are going through this.

ClmAlfie

Peregrinus wrote: »

I'm really sorry you're going through this.

If your father is not demented or otherwise mentally clouded, he can't be compelled to accept treatment that he doesn't want. This includes a feeding tube, obviously. Is he declining other treatment?

Are the doctors telling you that he is dying, or is this your own reading of the situation?

If the doctors think he is dying, they will be willing - perhaps even keen - to talk about transitioning him to a palliative care regime, either in a hospice, if a place can be found, or in the hospital. As he has his wits about him, this is a conversation in which he has to be involved.

If the doctors think there is treatment which could or would save his life, they will be reluctant to move to a palliative regime - it is unethical not to provide lifesaving treatment that is available.

It's possible that your father is depressed - not an unnatural reaction to a shocking diagnosis, burdensome therapy and virtual solation from his family all happening more or less together. Some counselling might assist him in processing what is happening to him and help him to be more engaged with the decisions he needs to make.

Also talk to the doctors about what would have to happen before your father could be discharged home. Going home, if that is possible, would very likely improve his form. And if there's a realistic path to a home discharge your father needs to know that; it may be that he has given up on it, or is afraid to hope for it.

Thank you for your post

I agree with you about depression. He is very depressed and traumatised too. He was always a very fit man and to see him reduce to where he is now in a short time is devastating for him and us

Dr hasn't said he was dying but to us he does look like he is
He has given up the will to live, is barely eating or drinking
He tells us he just can't eat and is very weak. He lost alot of weight
The only treatment he has is chemo

We have told him not to give up, to hang on etc
We are trying to get him home and have things organised but there seems to be some problems

We are also trying to meet the head Dr of the team but he never seems to be available. We have met other Dr's in the team but they don't actually really know but only say we're doing this and that. But not about other treatments or palliative care
We just want to know from the head Dr what's is going on, is he going to die, palliative care etc

We feel that if the hospital eased up on their protocol, we should have went in every day to see him and to feed him
That might have helped

If we could get him home, it would help

ClmAlfie

spaceHopper wrote: »

Is he in a public or private hospital?

Ask for meeting or conference call with his team. You will what his consultant or their reg, a nurse who has been caring for him.

Ask for an over view of his condition and what it best for him now. Is a cure possible, is there anything that can be done to give him more time with a decent quality of life. Or are you looking at end of life care? Don't go on the attack everyone there wants what is best for your father. My experience with the HSE and private hospitals is that the people are generally good and want to help.

Tell them you feel that he needs more family contact as he's declined without it. If he's dying can he me moved to a hospice or even home it that is an option.

Have you spoken to the Irish Cancer Society they would be able to advise you better than most here.

Sorry you are going through this.

Thank you for kind post

We are trying to meet the head Dr of the team, just to tell us what is really happening. We have met others on the team and they really don't know other than say we're doing this and that. Not one of them has said he was dying, need palliative care etc
I do agree with you about more family contact. But the hospital won't allow it cos of their protocol. We feel if they eased up and allowed us to come in more often and to feed him, it would have helped

We feel its not the cancer that will kill him, it's cos he's barely eaten or drinking, very depressed, traumatised and has given up the will to live. That what he will die from

We are trying to bring home but there are problems at the moment
It's so hard seeing him the way he is now. He was alway a fit man

YellowLead

Apologies if somebody has mentioned this org -
https://www.irishpatients.ie/
The Irish Patients Assocation. If you feel there are inadequacies regarding your fathers care they could be a useful port of call if you are not getting access to speak to somebody at the hospital.

Regarding Hospice care it could be the case that they don’t feel your father is at that stage, you said they have not said that he is dying.

Regarding hospital restrictions- as heart breaking and horrible as they are, unfortunately it’s not up to the hospitals themselves, they must follow government / NPHET / HSE guidelines.

It is incredibly difficult to see a parent go through this, I was there myself years ago and I really feel for you. Having to go through it in this pandemic - 10 times worse. Best of luck to you all.

Wanderer78

fair play to the folks here on boards, this is an astonishingly difficult time for a family, a time of great confusion and just ultimate pain, well done folks, some exceptional advise here, thank you

Peregrinus

ClmAlfie wrote: »

We are trying to meet the head Dr of the team, just to tell us what is really happening. We have met others on the team and they really don't know other than say we're doing this and that. Not one of them has said he was dying, need palliative care etc. . . .

Have any of them said that he isn't dying? Have you asked them directly if he's dying now? (Not "Will he die of this cancer at some point?" but "Is he dying now?")

Chemo can be pretty brutal, and its very common for people undergoing chemo to experience a significant deterioration in their apparent condition. This will be exacerbated in your father's case by the not eating and the not accepting a feeding tube.

It may be that the doctors reckon yes, he's having a hard time now, but that's normal; when the chemo ends he'll feel better and his appetite will return and his condition will improve. They may think that he is not actively dying. If they do think that, they may even be right.

They may not know, or may not appreciate, that your father is depressed - though that would be a bit surprising; a cancer team would be pretty familiar with depression as an incident of cancer diagnosis/treatment.

Also - this is a harder question to ask - does your father think he is dying? If he does, that would certainly contribute to any depression. And if he thinks that when in fact it isn't correct, that would be terrible. So if the doctors, when asked, tell you that they don't think he's dying, that's something your father needs to hear as well as you.

I'd talk to the nurses on the ward. They may be able to offer you some reassurance. On the other hand, if they think your concerns are well grounded, having your concerns voiced to the medics not only by you but also by the nurses can only help.

spaceHopper

ClmAlfie wrote: »

Thank you for kind post

We are trying to meet the head Dr of the team, just to tell us what is really happening. We have met others on the team and they really don't know other

You won't get his consultant stop trying ask for the meeting and state cleary that whoever attends has to be fully up to speed. His nurse will know as much if not more. Maybe ask to speak to the ward manager. Aslo just show up one extra day a week the wards locked? Bring him in ice cream in this hot weather.

When my father was in hospital I always asked how he was doing alsong with a more pointed question. Even what has he eaten today. It was my way of making the look at his file.

If he's not eating you need to keep an eye on his swallow as if he stops using it the muscles will weaken. Ask them to get a SLT to and OT to see him.

Rubberchikken

I find it difficult to believe that no one who knows exactly what's happening with your dad can't sit with the family or at least next of kin and explain the situation.

People should not be left guessing as to issues it prognosis of their relative and I certainly wouldn't accept anything less that the clear truth as difficult as it may be to hear.

I hope you get some answers Op .

ClmAlfie

Hi guys

Just to say thank you so much especially Peregrinus for the kindness, advice and support.
You gave us abit of hope and what we should do etc
regardless of what will happen to my father

The day l posted, we found out he had an infection and is on antibiotics for it. And since that day, he has improved abit. Eating abit and drinking alot of warm milk. He doesn't like anything cold.
He's still v tired and weak but despite not having any voice, he's abit more alert. Still very down.
We also have met the main Dr who has reassured us he's not dying and despite the way he is, the Dr is happy with him
This is abit of good news and abit of relief

God, it was so very hard for the last 2/3 weeks to see him reduce dramatically to the state of where he is now. We were very unprepared and especially for him. It was a shock and very upsetting
This week was the worst as he wasn't eating, drinking or anything. He just wanted to die.
He had an infection and it was probably making him worse
We did asked a head nurse was he dying and she didn't give any answer. We were ringing every day about my father and no one could really give a proper answer. That didn't help either

We do know for now he is not dying and is ok and hopefully bit by bit he'll improve. We do know it's along road ahead and we do know he still could die.
He's still on chemo treatment and hopefully he'll be OK after the next chemo

We also have been given more visits time as the Dr said it would be good for my father. We have brought in a radio so that he can listen to news, traditional music and songs
I have witnessed a nurse joking with him and he smiled.
The nurses are great with him

We are hoping if he'll improve, we will be able to bring him home. And that would be great for him as well

I feel better after reading all your posts and have slept better last night. And also l have accepted that this is him now, he could get better or he could die

Thank you to all of you, it means alot to me

CoBo55

That's better news to hear hopefully he'll keep improving. The psychologist usually speaks to anyone who's like that and it's amazing what they can tease out of the person even when they try their hardest to hide it. It's a terrible roller coaster all you can do is hang on and take every day as it comes.

ClmAlfie

CoBo55 wrote: »

That's better news to hear hopefully he'll keep improving. The psychologist usually speaks to anyone who's like that and it's amazing what they can tease out of the person even when they try their hardest to hide it. It's a terrible roller coaster all you can do is hang on and take every day as it comes.

I think he had someone like a mental health nurse and a chaplain which it helped too

CoBo55

ClmAlfie wrote: »

I think he had someone like a mental health nurse and a chaplain which it helped too

Would he be religious? My father wasn't but I'd imagine it would be a comfort to your father if he has faith. I'm not a believer myself but I wouldn't knock anyone who is, each to their own.

Sonic the Shaghog

ClmAlfie wrote: »

I think he had someone like a mental health nurse and a chaplain which it helped too

I was just going to say, surely if he isnt dying and is so down they'd look into an antidepressant at this stage, mental well-being is vital to aiding the physical, especially now

ILoveYourVibes

im very sorry op.

Remember to take care of yourself too.

It must be so hard during covid.

Take time for you also.

Patsy167

Stoicism might be useful for seeing the situation from a different perspective - https://dailystoic.com/14-stoic-quotes-on-death/

spaceHopper

Boards doesn't like people giving medical advice so I'm limited on what I can say but as he's under the care of a hospital I'm going to say two things.

Ask for him to be seen by a Speech and Language therapist (SLT) they can give him exercise to strengthen his voice and his swallow. If he loses his swallow it's very difficult to recover it and it could lease to chest infections if he aspirated food into his lungs.

Always ask what his CRP's are it's an protein that marks inflammation and infection, if they are going up he probably has an infection going down the antibiotics are working. The hospital should be monitoring this any way.

Bring him in treats but also the likes of sugar free gum if he's not cleaning his teeth between snacks it will help keep his teeth clean and keep a flavor in his mouth, you may need to clear that with a SLT.

ClmAlfie

Hi guys

An update about my father

He's back to himself nearly 90%, walking, talking, eating and even driving the car. You never guess he was very sick earlier in the year

After my last post, I mentioned he had an infection and was on antibiotics, that he was on chemo, gave up the will to die etc. He couldn't eat or drink or get out of the bed. Couldn't talk but was able to whisper.

He had said at the time he found it very hard to eat, drink, take tablets etc cos he felt there was a blockage in his throat/chest and wanted help. He didn't want to die. He also said he felt like he was in a black world, didn't know what was happening and can't remember anything that happened since he went into the hospital. We explained to him what was happening, that he had cancer etc. He was shocked as he said he has no recollection of it. But he was positive that he was going to get better etc. A week after he finished his antibiotics, he went downhill rapidly. We were back to square one and he was getting worse. Fading away, not eating, drinking, no interacting and also it was like he was overdosed from medication cos he was so knocked out.

The doctor and his teams were baffled and didn't know why. They said it was not cancer related and shouldn't be dying. They stopped his chemo as they thought he was too weak for it and they did more tests.

It was an infection again in his chest/lungs which the antibiotics didn't work the 1st time. He was put on a much stronger antibiotics which he had to take for a month

Bit by bit he was getting better and stronger. He started eating, drinking, voice was getting stronger and after 3 months in hospital he came home. At 1st he had a wheelchair, then 2 walking sticks and now he's well able to walk and...talk too. And he still doesn't remember anything from being in hospital

He went back on chemo and is doing very well. He doesn't get sick from it, just tired. Had his scan recently and the tumor is shrinking away. (But that's not to say it will cure him or he could still die from cancer)

He gave us a fair fright. We were scared and worried that it wouldn't be the cancer that would kill him, just from starvation as he was just not able to eat cos of the infection.

The doctor, his team and nurses were great even though at times we were frustrated and felt like they weren't doing enough. They didn't give up on him especially during the covid

We really do appreciate and are very thankful for what they have done

Also to you guys, for your advice, support and kind words

Thank You

Pistachio19

Great update - only seeing this now and was afraid the update was bad news. Hope he continues to stay well in himself. Probably for the best he doesn't remember his hospital stay - though it must have been traumatising for the rest of the family. I can't even imagine it.

Wanderer78

best of luck op, its a horrendous experience to watch a loved one in such a situation, i wish you and your family the best, we absolutely dont appreciate our health care workers at all, and even during our current situation, we still arent, best of luck

CoBo55

Fantastic absolutely fantastic news. He's a hardy one you have there👍 Probably best he can't remember what happened in the hospital.

connected1

Hi, I'm just reading this now too, having seen your original post in May What wonderful news! I'm so glad, and maybe it will give hope to other people. Wishing your father well.

ClmAlfie

Hi guys

Just to let you know my father has passed away last Jan. Cancer got him in the end. He was doing very well. But at the start of Dec, we had notice he was getting more tired, not eating, confused and getting weaker. We thought it was the bad infection again and he was treated for it but it wasn't working. He went for a scan and were told the cancer had spread. We were shocked as only couple months before it was shrinking. But once chemo was stopped, it got bigger and rapidly spread at a short time. The only blessing we have is my father died at home peacefully surrounded by his family and was not in pain.

We all miss him as he was always the big main person in the family.