This war started because Dying with Dignity released a campaign video and they have gone full-on-fear. If you want to watch it, the link is here:
https://twitter.com/dignityindying/status/1170706863677161473?s=20
The video shows a clearly grieving woman talking to her son about her father and showing him pictures and talking proudly about his life. Then the boy asks about how granddad died and what she says and the pictures don't match. She says all the things that you read in the books, written by palliative care doctors: the things you want to believe. She says he had cancer and when they couldn't do any more because it had spread he was moved to a hospice, where the doctors and nurses did everything they could to help him and then when the time came he was happy and it was like drifting off to sleep. The pictures showed the flashbacks that the woman had of those times, which included her dad writhing in pain, struggling for breath and saying, 'This can't go on any longer.'
It is a distressing video because her memories are distressed. It is horrible to watch your parent die. That is a fact. There is no getting away from that. Even if you can genuinely say, 'when the time came he was happy and it was just like drifting off to sleep,' then it will still have been horrible.
The medics working in End of Life (EOL) care are outraged about this video. They think it is scaremongering and want it taken down. I can understand that but I think they are wrong. This is just another opportunity for honest discussions about death. One of those medics, Kathryn Mannix (who wrote a brilliant book about dying - With Death in Mind), is often the voice of reason and has a very calming approach to death is particularly distressed by this video. In her book, she clearly states that she is against offering people the choice of euthanasia in terminal illness and it seems as though her main argument is that if you offer people that choice then they feel pressured into taking it. She writes about a man who came from Holland, where assisted dying is allowed in terminal illness because he felt pressured by every doctor asking him if he was sure he didn't want his final shot.
The medics on Twitter have responded to the video saying that in all their years in the job they have never seen anyone die like this. When people reply to say that their loved one did have a bad experience they seem to be told that it's just because they don't understand death that they feel like this.
I read Dr Mannix's book when my Mum was diagnosed with terminal cancer, six months after my dad died. I thought I needed to be prepared. I had watched Dad die and had a sneaking suspicion that some of the things that we thought had gone wrong were because we didn't understand the death process. I thought that if I understood more then we could make sure that Mum had better care and we would feel better about it. When Mum's final 72 hours were nothing like described in the book I was quite cross with it for misleading me. I spent ages feeling let down by this random doctor that I had never met. Then she went on Griefcast (this podcast is the best thing ever and you should really listen to it, whether you are bereaved or not - it's so human) and I listened. I still liked her, the things she said and the calm way she said them. I still think there is a place for telling good EOL stories. We need to know that dying can be alright. I tweeted to say that I had enjoyed the podcast and had forgiven this doctor because she said that not all deaths were normal. I know that my Mum's wasn't entirely normal because when I told my GP why I couldn't eat or sleep and was bruising myself in my sleep, having constant flashbacks every time I closed my eyes, she gasped and said, "Yes, that would be difficult. Don't expect to get back to work for 18 months. I had a colleague who dealt with something like that and they had to give up medicine." I know it wasn't normal because the nurse who came out in the middle of the night without the drugs we had been promised she would have to help was sobbing as she left. We knew it wasn't entirely normal because we overheard the district nurse and the hospice nurse whispering about something stercoraceous and possible catastrophic haemorrhage. I'm so glad I heard those whispers because at least I was able to look up those words. I can't imagine what kind of state I would be in if I hadn't been prepared for the possibility. I honestly think I would have always have thought it was something I did that caused it, rather than it being something that can (and does) happen with liver and abdominal cancers.
No one told us that this way of dying was a possibility. No one mentioned it to my mum. I can understand that no one wanted to frighten us but I would argue that we need to know.
When I was pregnant, I read every book on birth there was. I knew everything that could go wrong and some of the things you could try to mitigate against them. I knew that it was unlikely to be painless but I also knew that there were several options for managing that pain. I knew that if it all got too much there was an option of a cesarean section. In the bad old days, women didn't know any of this. They were given a wet flannel to bite down on and many of them died in awful ways. Lots of babies had horrible, traumatic births and didn't make it. And people didn't talk about it because they didn't want to scare each other. Then medical advances were made and people lost their connection to how to give birth naturally. Now, we are embracing that both options are possible and people actually support each other.
EOL physicians argue that we have forgotten how we die. They say that when grandma died at home and we laid her out in the front room or carried her out of the house on the chair she was sitting in when she died we knew what death was. They say that since hospitals and the NHS we have forgotten that people die. I would also argue that as we've got better at treating the acute illnesses people die in more complicated ways.
The people from Dying with Dignity and the people who have commented on the video to say that their experience of watching a relative die matches that experience would like assisted dying to be part of EOL care.
I am confused about the argument that people haven't really witnessed their relatives suffer. It seems to me that there is a disconnect between what doctors and relatives think is happening. From my experience, some of this is due to how little of the patient a doctor actually sees. It's the relatives that see the wincing in pain, that hear them say, "If I were a dog...". When the patient gets in front of the doctor they say, "Oh, no. It's not too bad. I don't want to be any trouble." I still doubt that you can die without there being any pain and I'm sure that, just as in childbirth, fear makes that pain worse. If doctors get the medication right then that pain might not be there at the point of death but the relatives will have seen pain at some point.
Mum didn't want to die and I don't think she'd have taken the option if she had been given it but she might have in those last few hours, if they had talked to her about what could happen, rather than whispering about it behind our backs. Dad would absolutely have taken it, except that Mum would never have let him. Even on the day he died she thought he just needed to pull himself together.
Assisted Dying might not be the answer we think it is but I would like to see it not dismissed without discussion. If we could keep it as an option - like a C-section. Something that isn't what everyone would want but might be the best option in certain circumstances.
I'd be really happy if the medics could write an honest guide to what you could expect when dying, where they explain that death is caused by the organs failing and how the symptoms you get are related to the organ that fails. I'd also be very happy if they considered assisted dying as an option.
No comments:
Post a Comment