Struggling with making end of life decisions for my dad

[Destinysdaughter]

Not sure where to post this, but just looking for advice and support about this difficult issue. My dad is 86, has had dementia for many years and is also blind. He's been in a care home for 5 years, I was his carer before that.

On Sunday evening I got a call from the care home saying he was very ill and was going to be admitted to A&E as he was having trouble breathing. I went there to see him, he was on an oxygen mask and he was really struggling to breathe. They also were giving him antibiotics. I went to see him the next day and although he was very poorly, he seemed a lot better.

However, The next day the hospital called me to say that he had deteriorated to such an extent that the consultant had made the decision that care should be withdrawn from him, so the antibiotics, drip, oxygen etc had been withdrawn, mainly because his oxygen levels were so low, they didn't think he would survive.

The consultant has said that he has pneumonia, and sepsis which has affected his kidneys. We have all agreed that his quality of life is so low that it's kinder to remove the care that might give him a slightly longer life. However, there's times when he seems lucid and aware and I just feel so bloody guilty that we've basically agreed to starving him to death.. Tonight we fed him some yoghurt and water and juice and he seemed both so desperate for sustenance and grateful and pathetic..

How do you cope with condemning your own parent to a death like this? I've stressed to the doctors/ nurses that we want him to be as comfortable and peaceful as possible. I accept that he is at the end of his life, but I wish that they could sedate him so that he could pass away peacefully rather than gasping for breath and desperate for food and water.

Just wondered if anyone had any experience of this and any words of advice. The nurses on the ward have been lovely and kind so I don't have any issues with them or the consultant, it's just dealing with the guilt and any ways we can help him in his last days...

Does the hospital have a hospice/palliative care team? If so, I urge you to contact them and have them talk you through this. You can absolutely ask for more sedation for your father -with or without hospice care. When FIL was dying we realised the care team took its cue from us about morphine - we asked for more for him, they gave it.

And you should feel no guilt at all. I have no doubt you were a great daughter to him all your life and I'm sure you have been exemplary as a carer and as someone supporting him in a nursing home. That isn't easy.

Also death is rarely completely easy - it does look and feel hard at time - the body is failing.

My mum died in somewhat similar circumstances. We gave her water and fortified drinks but she really wasn't able to eat anymore.

Finally, maybe talk out loud to your dad, tell him stories from his life, how much you love him, how it is ok for him to say goodbye.

This is hard, OP, but you are being such a loving daughter. Don't feel guilty.

If he is showing signs of being distressed, the the Palliative Care team should be involved. Usually they would give some analgesia through a syringe driver, such as Diamorphine. This should remove any chances of pain or distress, but will also have an suppressive effect on his respiration, but this is a kindness. You can still give him sips of water and use wet swabs to keep his mouth moist, sometimes they use a moisturising gel.
Sorry you are in this situation , it’s a difficult place to be.

I just want to echo the poster above. You are doing the right thing in my view. Give him what he can tolerate. Soon he won't be able to. He is gradually shutting down and withdrawing from the world as his body fades. I used to be a nurse and was often struck by how sometimes patients seemed brighter and more together the day or hours before they died. All the best.

Really sorry you're in this position

I have recently had something similar, but key difference was dad didn't want food. If he had wanted it, then I would have been keen for him to have something....

Re sedatives, they gave him a sedative as soon as we asked. It was slightly hard to judge because he was mostly non responsive but when I pointed out some twitching and his breathing pattern, they did it straight away. Have you asked?

Tbh he had been so ill and suffered so much, I didn't see it as making a decision, it was more just the natural order of things at the end.

In terms of easing the last, we were told to keep talking to him in a way that we thought he'd find helpful, because even when he was non responsive, he might be listening.

I must go to bed but I'll keep this thread on watch in case you need an ear. I'm really feeling for you

I’m sorry you’re in this position.

Nobody is starved to death. It’s a natural part of the dying process to stop eating and drinking. The person can always eat and drink if they wish.

There are also lots of options to help with breathing including low-dose morphine and using a fan across the person’s face. There are options for managing agitation, nausea and secretions.

Also - care is never withdrawn. The goal of the care changes, from sustaining life to prioritising comfort, but it is not withdrawn.

Ask to speak to the doctor responsible for your dad and ask what the plan is for palliation, and specifically what the plan is for managing distressing symptoms such as dyspnoea and agitation. Often medications are charted so the nurses can give them as needed; sometimes a continuous infusion of drugs for pain, dyspnoea, agitation and nausea is started.

Continue to offer food and drink and accept that your dad may not wish to have either.

PS I also asked for a mouth spray to keep him more comfy and they brought that immediately. This was all before he was transferred from hospital to hospice so hopefully hospitals in general will have these.

It should've been made absolutely clear to you.
It is a medical decision on which they have sought your opinion. But it is a medical decision. You have in no way condemned your father! Agree palliative care opinion sounds like the way forwards.

Thanks so much to everyone who has responded so quickly. I was not aware of a palliative care team. This has happened so quickly and the diagnosis also changed that we’ve been blindsided by this. I will ask about it when we go to the hospital again tomorrow. I just want to do what’s best for him, it’s so distressing seeing him struggling to breathe and to be so desperate for liquid or yogurt.

I am so sorry you are going through this. It is a terrible decision to have to make. I have nothing useful to add, other than to ask if your dad has ever expressed any wishes on this subject in the past, prior to having dementia?

Whatever you do, you mustn't feel guilty. The decision you make is in your dad's best interests, out of love. That is all that matters here.

OP you aren’t doing anything wrong but the hospital team need to have a proper advanced care planning discussion with your dad and you. They may feel full withdrawal of treatment is the right decision. If they shouldn’t make that decision in isolation and it shouldn’t include food and water.
Please please say you want to meet with the consultant ASAP and ask them to involve the palliative care team too. If he is in a hospital you could also look at transfer to a hospice.

No one who is thirsty or hungry should be denied food or fluid. Unless there are reasons why they can’t eat and drink and in that case artificial hydration should be discussed even if it isn’t ultimately felt appropriate.

Making a decision not to resuscitate someone after they die is one discussion but then how active to be in treatment has many levels such as no ventilation, no antibiotics etc. Your dads wishes should be central to all these conversations.
There are many ways to help with breathlessness, such as breathing techniques, a hand held fan and small doses of an opiate like morphine.

You sound lovely and so caring but the hospital need to communicate with you all better.
Best wishes to you and your dad.

Sorry to hear about your Dad. This was my nursing field for a long time.

I would ask for medication for all likely symptoms to be prescribed. Not just pain but secretions, nausea, agitation. They can prescribe saliva spray for a dry mouth.

I agree with pp that he probably isn’t experiencing much hunger. Its not really that he’s starving - as he deteriorates he won’t need food to the same extent. Absolutely, if he seems alert and wants to eat and drink he should. But if he doesn’t want anything, that’s okay. Research suggests alternative feeding sources like NGs aren’t really beneficial, they aren’t nice to put down so although it seems tough, just letting him have what he fancies is the most appropriate choice.

I would ask if the palliative care team or Macmillan (they’re associated with cancer but they cover all palliative care) would review him to ensure his needs are being met.

Please don’t think of it as condemning him to death. The Dementia has taken hold. The consultant I worked with said we were looking at ‘neither hastening death or prolonging life’. If he has limited quality of life, interventions are unlikely to be successful and even if they are, he’s likely to have a poorer quality of life if he gets better. I would focus on ensuring they make him as comfortable as possible.

for you. I’ve been a nurse a long time but I’ve also been the relative, even as a nurse I found it hard to be that relative.

My dad is in a nursing home with Alzheimer's also and while he is ok physically on a mental basis we have lost him. He is not my dad anymore. He has gone from being a very loving affectionate softee of a dad to having a temper he never had.

Whilst I still love him to bits it is just not the same. I am sure you can relate to some of what I am saying OP.

If that was me I would enjoy the time I had left but let him go. Sorry if that sounds cruel. Mind yourself OP .

Oh op it is so hard. I went through this with my Mum, two years ago, although long before she died i had talked with the care home manager and decided that i wanted my mother to stay there if possible, rather than going into hospital, which meant that some treatment options, such as a drip, wouldnt be an option. My Mum eventually stopped being able to swallow, so although she was thirsty, the drink would pool in her mouth. She had the odd spoonful of food a few days before . I also felt at times as though i was killing my Mum, even though she was very obviously beyond recovery and her body was shutting down. For the last two days she was on a morphine driver and so not awake at all. You can ask about sedation, as it might be something they will do as things progress. You can ask anything you want, they are usually very straightforward.
I would talk to them about keeping him comfortable, is he on a drip ? Feed him if he wants it, he will stop being able to eat when things shut down further.
DH’s grandmother died in hospital of pneumonia and once they knew she wouldn't recover they did give her pain relief etc. She didnt have dementia, but she was extremely old and weak and so unable to cough and clear the infection. She was kept comfortable and died very peacefully.
I know how hard this is and my heart goes out to you.

for you OP. Going through the exact same thing with my FIL at the moment, so I know what it's like x

it's hard

Thanks so much for all the advice and kind words everyone. My father passed away peacefully this morning. I feel very sad but I'm glad his suffering is now over. My thoughts go out to everyone coping with this right now.

hugs to you Destiny

So sorry Destiny. . All love to you and your family.

I'm so sorry for your loss destiny. You were kind, and loving and considerate with him and did your best by him. No Dad could want more from his daughter

Thinking of you

Be gentle with yourself if you can.

I’m sorry to hear that.

Your dad had the greatest care at the end, and your presence in his life, which would have been a great comfort.

Be kind to yourself.

I'm sorry, this is such a terrible time. Look after yourself.

Be kind to yourself.

I've just read your update. I've asked for my post to be deleted. I'm so very sorry for your loss rip to your father. You sound very caring and I hope you are able to take comfort from the fact her has been released from the terrible disease that dementia is. 💐