There is a phone in/discussion on end of life care today at 12 on radio 4. Might be interesting/informative.
Jenny
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Thanks Jenny…just had a listen…x
Yes had a listen myself!
Interesting…though I feel the possibility of a ‘good death’ is perhaps over exagerrated and romanticised. Strangely I wasn’t that taken with the Danish version of a good death…everyone having glasses of wine round your bedside…sounds nice in theory…but if in dying I feel anywhere near as bad as I do on a bad chemo day I’ll be too grumpy appreciate the sentiment.
Also amazing how a programme on ‘end of life’ can ignore the issue of assisted dying.
Jane
I guess there can be a ‘‘good death’’ according to those with you at the end and your own version of a ‘‘good death’’…not necessarily the same…I felt sad at the fact most people (according to the programme) go through life without ever seeing a dead body…I’m glad I went to visit my Mum twice after she’d died…it helped me. So true in many ways, still, that death is so sanatised here in the UK.
The only bodies I have seen have been those of my mum and dad. I sat with both of them quite a long time (more than one visit) and yes it really has helped me get a sense of what a body without a person is like. It’s quite a moving and profound experience.
Death is sanitised in the UK and such reluctance to talk about it…as the programme suggested.
Jane
What a shame - I missed it.
I put my Dad in the cremator (spelling) at the crem and it was one of the best things I’ve ever done, knowing that I was with him right to the end. It also helped my Mum alot.
Sue
I’m sure you can listen again on radio 4.
I must admit I didn’t hear anything ‘new’ on the programme. Did anyone read this account in the Guardian/Observer a few months ago?
‘I’m going to die on Monday at 6.15pm’
When Marc Weide’s mother was diagnosed with terminal cancer, she chose euthanasia. (guardian.co.uk/lifeandstyle/2008/aug/23/euthanasia.cancer)
I also found this website: wellbeingindying.org.uk/index.htm
There is a lot of information and points of view on mortality and dying. I haven’t looked at this site before - but will save the link for future reference.
Jenny
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My experiences of seeing death:my mum looked peaceful,just empty
my cousin who died of bc aged 55 looked,if anything,amused.Her daughter and her sister sat with her the night before the funeral and painted her nails and did her hair
my husband’s body was the most terrible thing I had ever seen.He died in hospital of complications of MS.
I dont want to think about my own death or dying-it will come when and how it comes and I know that I will ‘rage against the dying of the light’.
I too listened to most of the programme, while painting the inside of my airing cupboard. That fact did make me smile when they said that many people with terminal conditions can continue to lead normal lives - what would they have made of my antics, standing on a stool, twisting into impossible positions while painting?
I wondered why no mention was made of assisted dying and that a ‘good death’ for me would be to go at a time of my choosing. What is the point of hanging around, in pain, drugged into insensibility with morphine for a few more days?
Interestingly I was sent our local hospice policy on suicide:
“Therefore all patients, their carers and families must be assessed and cared for in such a way as to minimise suicide.” You have been warned - if you intend to go into a hospice and have plans to do away with yourself if things get tough - keep it to yourself!
yours morbidly
blondie
Love your post blondie
I’ve had the oh so gentle hospice lecture on how they don’t do assisted dying. Mind you they do a good hard sell on symptom control and dignity…wish I believed them…lovely people but…
Thanks for links Jenny. There was another article in the Guardian recently about a woman who had gone to Switzerland with her husband. Unfortunately the flat that used to be used by Dignitas isn’t available now and I think there have been problems finding another one.
Jenny’s second link leads to a site with a book review of Swimming in a Sea of Death…a memoir written by David Reiff, Susan Sontag’s son. It’s about Sontag’s death. It’s a brilliant book I think…but not for the faint hearted. Sontag struggled with the thought of her own mortality.
Jane
Whilst I think the issue of assisted dying should not be ignored, I also feel I need to point out that when hospice do a "hard sell’ on dignity and symptom control it’s because in hospices, or with the right input from palliative care services, people can and do die peacefully, with dignity and with very good symptom control. I know this as I am in the ironic position of being a still practising palliative care nurse. Palliative care cannot take away our own struggles with our mortality but can make a real difference.
Nicky
I know Nicky I know…but…it doesn’t always work?
I love my hospice nurse and she does instil confidence and I think hopsices do a brilliant job, but it all feels just a little bit too ‘nice’ for me but then I’m a rager against the dying of the light and like Susan Sontag I don’t reckon I’ll ever come to terms with my own mortality.
very best wishes to you
Jane
Erm, I know this seems a trifle sad, but I make a point of walking around the corridors of the hospice every time I am there actively seeking out those who are writhing in pain and screaming out. I think my hospice has a policy of keeping doors to rooms open as much as possible. You rarely encounter a closed door. So I think I see a lot of what is going on. And it really heartens me that I have never, over about a six month period of weekly visits, seen anything that looks remotely like my worst nightmare of dying. Now maybe they move the screamers to another place. Or maybe they are all dosed up with morphine. But I do believe that in most cases (although I know there must be some exceptions) the hospice helps people make a dignified exit. And in a lot of cases they are able to maintain some quality of life, right up till the very end, also.
I know through talking to palliative care nurses that sometimes a death might be accelarated through careful use of painkilling drugs - some are powerful respiratory suppresants. But as long as the intention is to relieve pain and not to kill then I think that the hospice is within the law in administering a drug at a level that may be fatal. I’ve made it clear in my end of life instructions that if I find myself in a hospice and in pain I want as much pain relief as is necessary, even if this hastens my death, but that the primary objective has to be to reduce or control pain rather than to help me die. It’s a very subtle difference that I am sure hospice staff are well used to dealing with.
It’s other stuff that happens before I get that ill that frightens me - the gradual taking away of physical and mental abilities for example.
Deirdre
Having spent 2 weeks in the summer and just recently 10 days in the hospice, I am now not scared of the final stage of dying as long as I’m in the hospice. As some of you know 2 weeks ago, my friend’s mum died next to me in the ward and the care she and her family were given was superb. They were trying to move her to a sideroom but she went down hill so quickly that there was no time and the family didn’t want her moved at that stage. She had bc and it had spread rapidly to her liver and died within 4 weeks of knowing that she had liver spread and was only ill for 2 weeks before she died so it was a big shock to her family that it happened so quickly especially as they knew for how long I’ve been living with secondaries. She had had some pain in the morning that she died which they set a pump up for and she was comfortable very quickly. Her family were well cared for and the nurses were brilliant with the family. The curtain between our beds obviously does nothing to stop overhearing conversations so that is why I feel so certain about what I’ve written. I have every confidence that my family/friends will be very well cared for when I reach the end stage.
Like Deirdre says, whenever I’m in the hospice rather than the daycare unit I have spent time looking or more accurately listening out for people screaming in pain. Having spent about 24 days and nights as an inpatient, I have to say that you do occasionally hear people screaming in pain but that is when they are first admitted and they are trying to find the appropriate dose of painkillers and that is done very quickly. The 2 women I have heard screaming in pain both refused the pain killers offered and one even discharged herself in as much pain as when she was admitted!!! I was very confused by that but I suppose you can’t force people to take tablets unless they are detained uunder the Mental Health Act.
When I’ve written about being disturbed by other patients when I’ve been in the hospice that has usually been due to confusion and do not appear to be in pain or if they are in pain then they are assessed and given pain relief. The medical team are quick to change to a morphine/diamorphine pump to control pain if the patient is unable to swallow tablets or the pain is too severe and in the final stages, patients are given ‘drying up secretions’ injections which seems more dignified and comfortable for the paitient and people with them.
As Deirdre and Jane say, it is the bit inbetween being able to do things, being comfortable and the unconsciousness due to morphine that is troubling me. It is not troubling me as much now after my near death experience 3 weeks ago, in the hope that something like that happens again when I’m ready to die. It was very scary at the time but once they’d sorted out my breathing with medication, high oxygen and loads of oromorph, I slipped into a very deep sleep and woke up shocked that I was still alive and that I hadn’t noticed being sleepy before I went to sleep.If I’m prepared to die then I wouldn’t fight so hard to keep on breathing next time. I feel sure it was my determination to keep breathing that saved me this time until they could medically sort me out (although a student nurse made an attempt at killing me a few days later by turning off my oxygen!!!)
I haven’t listened to the programme but will try to but does seem odd not to discuss ‘assisted dying’. I know if I reach a certain stage then I want everything done as quickly as possible to speed up my death and from what I’ve seen of the length of time between people being admitted at end stage and them dying or being absolutely peaceful, they must be doing something to speed death up as I don’t remember it being that quick when I was nursing in the wards between 1981 - 1990. Hope that doesn’t sound scary to people. I think the way people are looked after, the drugs used etc now means that the patient and their family have a much more dignified, pain and symptom free death.
I know i need to discuss this further with my hospice team as I want to make sure that they have got it down clearly what my dying wishes are and that my hubby is in agreement.
This will sound very odd but I do feel relieved to be able to discuss dying as it is such a taboo subject and just upsets my family and friends too much when I bring the subject up so can discuss it with the hospice nurse and chaplain but not really anyone else so I know I’ve altered the thread subject but thank you for bringing this subject up - radio 4 is good for its interesting debates but I never seem to have it switched on.
Kate
I
Hi everyone,
I have never yet found the courage to visit our hospice, for many and varied reasons. However, I have spent time in the palliative care ward in hospital and on the last occasion was witness to the death of a lady in a nearby bed. While I appreciate Nicky’s position and knowledge as a palliative care nurse, I have to say that it looked very difficult in a busy hospital for this lady to be given as much dignity and care as I would like when it is my go. More than once I answered her night-time calls for assistance (as I did many times for the ancient lady who would insist on getting out of bed and falling over - I held her up over and over one night and insisted they put sides on her bed the next night - but that is another story…) The dying lady was in the middle of the ward with little privacy bar the curtain round the bed. As her end approached, her family were obviously very distressed and many other visitors were unaware of what was happening and carried on with the usual round of hospital bed chit-chat. Eventually one twelve year old noisy boy was removed from the ward by a relative who clicked what was happening. I found it all very distressing to see and to imagine that that was how my own death would probably be. I also hated the fact that another patient took it upon herself to come and hold my hand (I am not the most touchy feeling person in the world) when she saw my distress. I know I should be grateful for her ‘kindness’ but she wouldn’t leave me alone and made me feel worse so I discharged myself from the hospital within the hour. It was all so impersonal and clinical. I know the nurses and staff did their best, but the whole encounter still fills me with foreboding. When a friend died recently, I was so relieved to discover that she died at home and not on the dreaded D9 ward where she had spent so much time. We both used to be filled with fear that this would happen to us.
I don’t particularly discuss my death with my close family, but I am sure I will do when the time is imminent. I know what I want (though not in the fantastic detail that you have managed, Kate) and used to joke with my friend that we would probably end up close to each other (in a woodland burial site) so we could pop round for coffee and a chat! Well I’ve been and had a chat with here but had to make do without the coffee!
Jenny
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Thanks Kate for being so honest…not least becase yours is the hopsice I will die in if I go to a hospice. I have thought though and talked to my hopsice nurse about it that I want to, if I can, die at home. I am a very private person and I don’t want to share a room and I don’t want to be in instituionalised surroundings. I fancy home rather than D9 any day Jenny.
I’m hoping for massive doses of morphine, unconsiousness and sleep. I hope I will keenly go with the flow and not hang about. I don’t want deathbed farewells apart from with my partner.
It is a relief to have this thread and I confess to giggling rather hysterically at the thought of you Kate and Deirdre montiopring south east England’s hopsices for screaming patients…perhaps we could set up a consultancy service?
One of the points made in the Radio 4 programme was that palliative care is better for people with cancer than for people dying of other conditions so that I suppose is a relief for us.
Like Deirdre I worry a lot about the bit before the end stage…about the gradual losing of capability. I think I feel that perosnally quite a lot right now because losing my voice has been such a shock to my identity and even though it is partly restored knowing it will never be normal again is really sad. I also feel quite frail from chemo and recongise that in general terms my helath has gone downhill over the last 3/4 months…but I know so many of you are living with that all the time…as much as not talking about dying I reckon we don’t talk about illness enough…the illness which comes with cancer, not just the treatments.
Jane
Oh Jenny, that does sound a horrible memory. I hope that sharing it with us has helped relieve it a bit, if you know what I mean.
On the whole I’ve found this thread reassuring, but we have all experienced the best and worst of nursing care on different days, and know that it is likely to be a bit of a lottery. I think that talking about it and thinking about the options beforehand can help us to have more say and so wrestle back a bit of control, assuming that’s possible in the circumstances we will find ourselves in.
Keep talking, this is valuable
love Jacquie
ps - Kate - erm…what sort of secretions are we talking about??!
Hi all, I’ve told my husband I don’t want to die at home…I don’t want to leave the memory/imagery of my death in our house when he has to go forward and live the rest of his life.
I haven’t visited my hospice, luckily I’ve been well so far but I drive past the hospice all the time, it’s a short drive from me. I look on it as the ‘big’ school you know you have to go to one day although you’d rather not…x
I agree with you Belinda
Like you, I hope needing hospice care is a long way off, but there is NO WAY I want to die in our home, where my children & husband will need to move on with the rest of their lives.