Dad's death, many questions

My advance directive(living will) instructs staff to keep me hydrated intravenously if need be and pain free even if this risks shortening my life. I have a copy to take to hospital to give to the ward sister, a copy is with my GP practice, and a copy is with my lawyer. My sons are aware, so they need not feel guilty .

'Medical staff have the duty to preserve life at all costs' This is simply not true.

Seems...dammed if they do, dammed if they don't springs to mind. Been through similar experience lately. For the first time ever I have considered there IS an argument there for euthanasia!

Seeing someone you love in pain and knowing there is no comeback from it is crucifying. BUT medical staff have the duty to preserve life at all costs and can't just tell people...well that's it! We won't try!

Absolutely NOTHING to do with money, more to do with the hippocratic oath. i.e. while there is life...we continue.

Am so sorry for your loss Lily but look kindly not annoyingly on the people who cared for your dad. They were in an impossible situation

Willow10
My husband and myself feel exactly the same as your neighbor regarding the death in hospital of my mother in law.

She had dementia, and after a fall was clearly dying, but it took so long, and we just went along with what we were told, all food and eventually liquid was withdrawn, it seemed unkind

In retrospect, we should have asked a lot more questions, and been a little more assertive, I don’t think her end was very peaceful

so say, for example, someone who is for palliative care may have trimethoprim so that they dont suffer from the pain of a UTI but wont necessarily have strong IV antibiotics for urinary sepsis.

So they are on antibiotics, but its symptom related rather than livesaving antibiotics IYKWIM.

Its hard to generalise though as these days its very case-by-case

Also. If it was just tube antibiotics, then a bad chest infection would still probably kill him. So they were just there to relieve discomfort.

If they were admitting him to hospital for IV antibiotics then that would probably not be in his best interest

I understand what you mean GreenGran but I think that since he was just unalert, but not actually dying then purposely letting a chest infection kill him might have fallen into a grey area in UK law IYKWIM.

However unfortunately even if we DID allow people to end their lives, he wouldnt have qualified to make that decision..

So falls between gaps wherever he may live

notanan2 I would agree with you, in most circumstances, but he had been comatose for a long time, and didn't have any idea of what was happening to him. It would have been kinder to his family to let him go, rather than prolong their misery.

The thing is GreenGran , chest infections dont take you "gently" which is why antibiotics are often still given to people who are for palliative care. Or for community care only. A DNAR would have no bearing on this.

Its a difficult balance to strike. Some dying people are even operated on if the operation is the only way to ease distressing symptoms.

Dont be hard on yourself it's only four weeks since my mam died and I've replayed everything in my head knowing the care staff did everything for her she died peacefully with us beside her. You question every last moment but honestly I think your dad will of had the best care offered. My condolences are with you .

My friend’s husband was in a nursing home after a serious stroke, not expected to live more than a few weeks. He “lived” - if you can call it that, for 16 months. Unconscious for most of that time, being fed a liquid diet through his stomach, arms and legs stiff and contracted.
Every time he developed breathing problems they gave him antibiotics, saying that they “had to keep him comfortable”, even though he was in a coma and his wife had signed a ‘do not resuscitate’ form.
I think that, in his case, it was all about money. His care was paid for by the NHS, and he was very easy to look after. All he needed was to be kept clean, turned over now and then, and have some food put into his feeding tube. They should have let the chest infections take him gently away. Instead they kept him alive as long as possible, for no reason. His wife died only months after he finally succumbed, and I blame the stress she was under for so long.

Thanks moggie, you are right, I was there but its catching up with me now alright.

I suppose if he had been able to have some sort of sensible conversation about reality , it would have eased the path. But no, it was not to be, until the bitter end.

maybe they were just trying to comfort you but had the opposite effect.they not really trained to help with the dying ,surely a macmillan nurse would have been availible.at least your dad knew you were their for him thats what really counts..

Farawaynanny when your mum is having a lucid period try to get her to agree to a DNR. This stops any resorting to intrusive treatment and resuscitation if she becomes really ill. She will need to talk to the doctor about it. We did this with my mum when she was in hospital. I'm so pleased we did. She died quickly and without having her chest thumped and an oxygen mask covering her face.

Yes, also totally get how you feel, and the questions that are arising.

Nowadays, medical/nursing staff are terrified of being accused of hastening death, and that often translates into prolonging it - and I agree it is cruel.

I recently started a post on the subject of talking about wishes for end of life stage- we should all discuss how we feel about it, what we would wish to happen, how to be treated or not treated, artificially fed or not- antibiotics, DNR, etc.

Because of several friends and family who have found themselves in that situation, we have talked at great length with OH, and with DDs- and sibblings- so they know to respect our wishes. A god idea too to make advanced directives - with many scenarios envisaged. In Switzerland where we live, we can take this to the next stage and take matters in our own hands if we want to.

It takes a long time to come to terms with it all, take care.

Sorry for the loss of your dad Lily65.
I understand exactly how you feel. My dad died in February and had a very similar experience. I find it very hard to go back to his death.
Sending you best wishes, I hope with time it becomes easier for you and for myself.

New Years Eve 2018, thanks jane.

Lily you haven’t said how recent your father’s death was, but I think it’s inevitable that it takes quite some time to process all the emotions of his last few weeks as well as all the regrets you have about the past.
Please don’t be hard on yourself.
Give yourself the time you need and then try to start living your life for yourself, without guilt or unhappiness about the past.

There are different levels of palliative care.

Not everyone who is for palliative care is for "end of life" care.. that comes later.

People on palliative care are often still treated with paliative chemo and antibiotics and other things to extend and improve their life for as long as possible. They can still have treatment for long term or new illnesses which may explain the positive updates. It just means they have something that will kill them and cant be cured, but can still very much be treated as other patients in other respect, so they can still maximise their life for as long as possible. Unless they state that they want NO active treatment and community care only, which can be done on a patients request if they are palliative, but not in their last days.

It is only when palliative patients are on "end of life" care that it switches to no treatment at all except for comfort.

Were the physios perhaps "chest physios"? i.e. getting him up so that he didnt gain a chest infection which is one of the most unpleasant ways to die and just because he was dying anyway doesnt mean he shouldng be positioned or sat out to prevent getting that as well ?

sodapop, I know you mean to be kind , as do so many others, but it was a very troubled relationship. Very.

Reading through this thread it would seem there are very different expectations of end of life care. It's difficult to know how each person and family will deal with impending death. Some people cannot even say the word others want to plan a funeral, hospital staff must try to get it right but don't always succeed.
Your father's last illness was only a small part of his life Lily try and remember all the other happier times you had together.

So sorry about your dad's death. I think it wasn't about money but simply that hospital staff know that death cannot be predicted perfectly. So the nurses get old people out of bed because it lessens the likelihood of them developing pneumonia and they continue to be cheerful because they really don't know and don't want to upset anyone. When my mum was in hospital I asked many times if we were looking at an end of life plan and was always told "No,". When mum died having developed pneumonia the staff were as shocked and upset as the rest of us (She was 94).
Mum often didn't want to get out of bed and one of the physics trying to persuae her once said "Come on we can't leave you there. You know a lot of people die in bed!"
My mum replied "That's where you're supposed to die."
It will take a long time for you to get over this but please believe everyone did their best.

Sorry for your loss lily and having very recently lost my Mother, I like you, have now started thinking back and wondering if things could or should have been done differently. Mum had great care and much kindness shown to her, but I think that after the initial shock and then all the organising of funeral etc, we get hit with memories and questions after the event. Be kind to yourself. X

Thanks one and all. I feel less alone now.

My father was in denial until practically the end. Desperately sad
I knew for at least one year that he was on his way out.

When he was admitted to hospital for a blood transfusion we were told he would be " home in 24 hours" I never swallowed this.

Near the end one of the nurses asked me what my understanding of the situation was. Once she had established that I knew he was dying, we were able to have a reasonable conversation, her and I and Dad and I.
It was a very difficult time and heartbreaking to see.