Worried about my dads recent death and apnea

Yesterday morning my dad sadly passed away. He had heart disease and lung and brain cancer and was given just weeks to live last month. Just over a year ago, before we knew about the cancer, he had a sleep test and was found to have severe sleep apnea, the NHS in the UK put him on a 110 week waiting list for a machine and titration. So a year in to this waiting list we find he has cancer, on top of his existing heart disease. I was worried about him because he was having awful nights sleep, it was classic apnea as I suffer from it too so know all the signs. So I hoped the NHS would push him to the top of the list now, due to being terminal from the cancer, but neither the oncologist or heart specialist would give him a machine as they said his body wouldn't take the oxygen power. I said what about BiPAP but they wouldn't allow that either. I begged them to try but no. I said to my dad he can test on mine with auto settings and I would watch over all night, but he wouldn't as he thought he would die due to what the doctors said to him.

Three nights ago he was given a syringe driver in the arm, which pretty much knocked him out 24.7, he didn't have any pain but the nurses said he was restless and plucking at his sheets and wanting to get out of bed, so he needed to be made relaxed. I was extra worried now as I wondered how his body would wake him to open his throat if he was heavily sedated with morphine. I was so shocked they wouldn't even try CPAP on him, I mean, you see sick people with oxygen up their nose all the time, I have no idea why they wouldn't allow him as cancer and heart disease sufferers use them all the time.

So three nights after he was put on the syringe driver he started what I later found to be known as the death rattle, like he was gargling with water on every breath, horrible sound. This was at home hospice. I was there with an overnight carer and she called the district nurse who gave him something, I have no idea what. It didn't really stop the breathing noise but I presume it was done for some reason. 7 hours later his breathing changed to be so fast it was like he was running a marathon, his Sp02 was very low and his pulse very low. The carer said he is fighting it. He wasn't doing his usual apnea breathing anymore, it was just constantly fast without the usual pauses. By this point I had heard from the carer the noise he was making was signifying death will be soon so I didn't call the nurse out again, which I hate myself for not doing now even though I doubt she would have got there in time to do anything. Around 30 minutes after his very rapid breathing began he died, just stopped breathing.

My reason for posting this is to wonder if being on lots of morphine or whatever else they put him on would mean his body couldn't wake up to breathe ? I am haunted by the thought he might have choked to death due to his apnea. Can you still breathe with sleep apnea if heavily sedated by morphine or other similar drugs ? Anyone been through this with a loved one ? Thanks so much for reading. My mind is in a mess right now with "if only's" and such like.

Oh, I'm so sorry for your loss and for all the feelings and questions it's given you. Unfortunately you describe the last few days of an older man's life struggling with all the diagnoses he had and apnea on top of it. I wouldn't take any of it as a lesson for you or anyone else with apnea (or the other diags) because you couldn't know the effects of one diagnosis and or all the meds on each other at the end... nothing useful to compare those problems with otherwise reasonably healthy people (including yourself) who happen to have apnea. Of course morphine does depress systems in the body that have changed a lot in ? a few months and is often used by doctors to just help people get through last days - when the doctors know the end is very near - to help ease the patients' suffering regardless of what they normally would do in other circumstances.

Even if he 'choked' to a degree in the last few days, he likely wasn't very conscious of it, and I would think the doctors knew what they were doing... if only trading some symptoms off against others (e.g. pain vs difficulty breathing). Why not make an appt to see his doctor(s) and talk to them re your concerns because I'm sure they'll be able to help you understand better what happened - questioning their treatment at the end re this med vs that symptom is fairly pointless I think though, as I'm sure they did their best for your father, however unpleasant watching things was for you. And he likely wasn't much aware of any of it himself. I'm sorry - don't make yourself nuts over it though... if you need to talk to someone maybe 1-2 appts with a therapist could help. His rapid breathing was due to his condition which wasn't going to improve.

I'm sorry you and your dad had to go through that. You sound diligent and caring, which is all any of us could hope for from our family in the same situation.

It was his time. Given his many ailments it's likely that nothing you could have done would have saved him.

My condolences on the loss of your father.

Please don't beat yourself up with the "what ifs" and "If onlys".

It sounds like the hospice folks and the doctors were doing what they could to ease pain, anxiety and suffering for your father at the end.

Morphine is commonly used in these situations to ease the pain and suffering of a dying patient, particularly an actively dying patient. By that point, the trade off between morphine's ability to ease pain (and anxiety) and its tendency to reduce respiration is usually skewed towards relieving the dying patient's pain and anxiety/restlessness that comes when a person is actively dying. And rapid breathing right towards the end is pretty common, regardless of why the person is dying.

In other words, they were doing their best to keep your father physically comfortable while his body's organ systems were actively shutting down and his body was, in fact, dying.

I second Julie's idea that talking with a therapist for a couple of sessions may help you accept that you and the doctors and hospice staff did all they could to help ease your father's passing from the world of the living.

I'm so sorry for your loss. I was with both of my parents when they died, and I feel privileged to have been there with them to the end. Please know that you did nothing wrong at all. You were there showing love, and that's the best anyone can do. God bless you for being a faithful son. I'm praying that God will give you peace in your heart.

It sounds like the natural course of the body shutting down during terminal illness. Your dad was comfortable and went peacefully. Even when we want that for our loved ones, there is still that feeling of panic. You did the right thing by keeping your dad as comfortable as possible. I'm sorry for your loss.

Having CPAP would not have helped. Your dad's heart was shutting down in the natural course of death, and the pressure from the CPAP might have put more strain on the heart.

I help people with their Advance Health Care Directives and a form I use says "If I am actively dying and in pain or discomfort, I request pain medications, even though I understand it may cause me to die sooner." This happens because it does suppress respiration effectiveness, but the person remains comfortable.

The aim of the morphine was to keep your dad as comfortable as possible. I once witnessed a horrible death of a young person who had throat cancer and he struggled so hard to breath at the end. The parents refused morphine for him, because they didn't want to hasten his death, and he looked absolutely terrified as he tried to get air in. You could hear him wheezing throughout the hallway and went on for hours. It was the worst thing I've ever experienced!

I've been through many deaths of family and my dearest friend. With morphine, they are peaceful and calm. The breathing changes as they near the end, but they are not struggling. I am so grateful the people I cared about could have morphine to ease their natural course of leaving this world.

I hope you will get some grief counseling. You were there with him, he knew you were there, and I hope you will be able to recognize that you did the right thing.

No answers for you, only my heartfelt sympathy. I am SO sorry, not only for the loss of your father, but for the pain you went through watching him go and your suffering now. Please seriously consider Julie's advice to talk with a therapist, even if only a few times, to work through your feelings, not only of loss but of the other feelings that still haunt you.

Hi BlizzardUK,

You may not know how UK doctors are taught to think, and make decisions.

First, almost every foundation trust hospital has an ethics committee, and doctors regularly have to attend its seminars.

Second, when the question of giving treatment comes up – as it did with the discovery of your father having severe apnea – the question UK doctors are taught to ask themselves is this: Is it worth giving treatment? Or will the treatment only make things worse?

Third, UK doctors are trained to consider: how much benefit will this treatment give? How many 'added years' – years of reasonable health? One year? Five years? Perhaps not even one.

Maybe none of this was explained to you.

From what you write, it seems that, in answer to these questions, your father's doctors – both the oncologist and the cardiologist – said 'discontinue treament – it will only prolong suffering'.

The other thing that UK medical professionals use is the idea of this or that 'treatment path' – the steps or stages a patient will go through for any given illness or condition. There is even a 'path' for end-of-life.

I think it's clear from what you write that your father's doctors and nurses put your father on that 'path' some months ago. And again, it's possible that they did not explain this to you – people in the NHS are tremendously over-worked at the moment. But if that is what happened, what that means is: there was to be no treatment, other than pain relief.

Which in turn means there is nothing you could have done, or have been expected to do. So be kind to your self.

There are UK charities which offer free support and counselling for the bereaved. Cruse Bereavement Support (0808 808 1677) is one, and the Marie Curie charity (0800 090 2309) is another.

BlizzardUK wrote: ↑

Mon Sep 26, 2022 2:17 pm

Anyone been through this

I know it isn't quite the same, but a few years ago I was in a slightly similar position when it came to a man whom I looked up to for many years as if he were my own father.

I was his health-care agent. He was unconscious and dying. I knew his wishes were that he didn't want extraordinary measures to prolong a hopeless situation. But when he seemed to me to be having some difficulty breathing, I had a conversation with the supervising doctor in which I asked whether PAP would make my father-figure more comfortable as he died.

I can't remember the doctor's exact words, but this was the gist: "Actually my understanding is that PAP would more likely make him LESS comfortable, since the buildup of CO2 in the blood is nature's own most-effective sedative at this point in the dying process."

Death never looks right, and care near that point is its own unique specialty.

Titration of morphine is standard and is something I and probably most would want at that point. And I hope that if it was me, my loved ones would rely on the medical people for the specifics of timing and amount and then not second-guess it looking back--instead feeling good about seeing that my wishes were followed as I was kept comfortable without unreasonably extending the process.

It was impressive to read how caring of a person you are as seen by your expressed concerns. Thanks for your post.

I feel good about the small part I played in my friend's wishes being respected right to the end. I'm fairly certain your father would want you to feel similarly. Your speaking to someone who knows you in person about it, or perhaps a pro who specializes in helping others to process experiences such as yours and grief in general, may be a good idea, as others mentioned. You express yourself very well, so you may get some very clear, practical, customized suggestions in return. I know that when my mother died, the helpful words from hospice staff at that moment were incredibly helpful to me and to my father.

I wish you all the best.

-jeff