I hope this post is allowed for discussion today when Parliament are voting on whether assisted deaths should be allowed. As a community effected by Liver disease how do you feel about this?
I lost my Mum to Nash in July 2022, we also lost my husbands eldest brother after his liver transplant failed to take in 2023. Both died at home with the care of family and hospice at home support and in terms I would say both in the end were good peaceful deaths. We were so lucky to have hospice support. Both Mum and brother wanted as much life as they could get even to the end of their lives.
I know Liver disease is an awful disease to suffer but doctors can never say exactly how long you have to live with it, and if this bill goes through how will this affect Liver patients who are heading towards an early death.
I worry that with the recent news that Hospices are struggling for funding and can't offer as much space how do we improve Liver disease end of life care for those with in our communities if services are cut. Iam not for or against this bill, I really think it would be down to each individual case, my worry is how we safe guard end of life for liver patients when they may be too unwell to make decisions for themselves. Would this kind of discussion have to be an early part of an individuals pathway? Interested to hear others views on this xx
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2022minks
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I long ago drew up Lasting Powers of Attorney for both health and financial matters so if I become unable to make my own decisions my attorneys can do so for me, and they know what my wishes are. In the absence of any guidance, surely the only thing medics or hospices can legally do is preserve life. In my case I value my quality of life way, way above quantity and have made that clear. You can probably gather from my comments that I am in favour of assisted dying. But whatever happens, I think a sensible adage in life (whether you are ill or not) is to hope for the best but plan for the worst.
Thanks for commenting and glad you have future planned, did you find it easy to do I imagine it would be a difficult thing to do but once done a relief to have sorted xx
Similar to NeiceByMarriage my Mum drew up lasting powers of attorney. They are easy to do on Gov.UK. You need them signed and witnessed by a non-relative and there is a fee. Not complicated, just some serious thoughts and conversations to have. Towards the end the had DNIs drawn up with the hospice and recorddd at the GP. They were in a yellow folder at home to hand to anyone who needed to know. A GP can draw this up too.
Yes my mum had a similar folder that community nurse team installed when mum was released from hospital under their palative team which contained a dnr and mums wishes for care at home. Unfortunately mum missed alot of pallative pathway whilst covid hit so with a long gap in seeing the pathway team she didn't set up anything legal and due to paranoid episodes towards the end wouldn't talk about putting her legal affairs in order, but luckily from going with her to appointments when she was in better health I knew she wanted to be at home, in the end her wishes I was able to keep.
I understand why people are wary about it, but as a culture and a society we don't talk about death enough.
My MIL has an large inoperable brain tumour. She cannot move the right side of her body, she has aphasia so struggles to talk - she can usually manage yes/no but this week for example has just been yelling "no" at everything. At 67, she has lost continence, she is bed bound, she cannot care for herself in any way and is in a nursing home. She has been judged as lacking capacity to make her own decisions. The woman we knew and loved is no longer there. We were told in January she had 12 weeks to live, but 11 months later, she is still with us. Add into that she is 250 miles away, has cut all contact with any family aside from myself and my husband and one of her siblings, so there is very little help and support.
She is miserable. We are miserable watching her, knowing that this is as good as it is going to get. I would not want to put my children through what we have been through in the last few months, it has been utter hell. If I was in the same place as she is, I would want to be able to end my life in the most dignified way possible and I would never want them to experience what we have had to experience. I am grateful to the MPs who have opted to keep the debate in this subject going.
Exactly! Most people love their animals more than a lot of humans and you would not let your animals suffer like that because you love them and don’t want them to be in pain. I don’t understand the difference.
Sorry to hear of the suffering. I have been a bit annoyed with some of the ill people saying it might make them forced into it. These people have their faculties and are not in debilitating pain from what they are saying. There are alot fo clear cases where the suffering should end. It is a 6month timeline for starters, how dare they say I shouldnt be able to make that choice! They dont have to make it, thats fine,but dont take away others choices!
I am very pleased this has gone through. I know some people are against it. I’m not sure why but to those people if they don’t want to do that fine but I fully believe it should be an choice so like I said I’m very pleased it’s gone through and I have been in support of this for many years.
I have given this much thought and am for assisted dying . But in regards to liver patients I’ve heard of so many times when the doctors have given a decompensated patient 6 months to live for then the patient to turn their lives around and then they are actually in a compensated state and live many more years quite healthy. So it’s a difficult one I’m speaking about liver patients.
I think this is a very worthwhile discussion for the forum. I listened to radio 4 PM programme and the News in a traffic jam yesterday evening after the parliament vote…so was a captive audience. Both offered well rounded debate and balanced reporting and I found it really thought provoking. The risk is…with an already overstretched NHS that investment ends up in the wrong place and we end up with a lopsided system. A point well made by Dianne Abbott. People should not suffer…but well managed deaths are very possible with high quality palliative care. The sector is very much the poor relation within the NHS and hospices which are a crucial part of palliative care are poorly funded and struggling financially because of the cost of living crisis. A lot of money is spent on cure and treating illness…but very little on the one thing that will happen to all of us…death. The culture of the NHS is to solve and cure, once this is no longer possible then clinical teams struggle to move on into the discussion of death. This is where palliative care is crucial but at present it’s so small and underfunded that it isn’t able to offer the coverage that’s needed and in liver disease in particular where there is huge stigma as well, then the benefits of a palliative care approach are often absent. The risk of legalised Assisted Dying is that the focus and investment ends up there rather than it being in tandem with high quality palliative care. The two are not incompatible….indeed they are both important parts of a continuum of care. Maybe the nature of the debate as it proceeds through Parliament will change and start to recognise the context more and in so doing raise the profile on a very important part of healthcare.
I’m glad it’s passed but don’t think it goes far enough. Alzheimer’s is my worry as both my mum and grandma had it. My mother lived for years with it and I don’t want to suffer for years like she did, better a quick ending.
Thank you for raising the subject we don’t discuss it enough, people don’t see death in our medicalised world and so they are afraid even though it can be a natural and peaceful end to life.
I agree with all the thoughtful contributions here. I keep meaning to get Powers of Attorney myself,
thank you and likewise to the others who replied - I agree that it is a serious and important topic. There are so many grey areas here like the challenge of an ‘accurate’ terminal prognosis. Hope it is ok to add in another theme that seems missing in all this (not seen anything in any media coverage) - persistent serious mental health issues (as this is a liver discussion, issues of addiction cannot be far away). This must not be left out.
It seems among the replies there is very clear support for assisted dying if done well to alleviate suffering. And isn’t alleviation of suffering a major component of harm reduction? And isn’t not causing harm the bedrock of the hypocratic oath?
Also, the impact on healthcare professionals who would be responsible for delivering end of life /terminal care must be considered - a considerable amount of professional care would be needed to support the individuals involved (and of course no one should be forced to end another’s life).
And the economics of it - it ought not to be about money but it is unavoidable. Certainly I would favour a quick end rather than accumulate NHS costs for elements such as hospitalisation. I have no family to pay care costs so if I live that long I will be nothing more than an economic burden. Yet my choice to avoid that is currently blocked.
And it absolutely is a system open to abuse by people who are greedy and manipulative who may coerce or over-ride the individual choice of a right to die in a quiet and dignified fashion or to prefer a natural course. Guardrails must be in place (so Mr Jenrick, yes judges are needed). It is an awful lot we need to implement as a society to ensure dignity and independence at the end of life. I sincerely hope those we vote into positions of power can make this happen.
I am very pleased about the "Yes" vote for assisted dying. It is very worthwhile to have this put in writing whilst you have the mentality to do so thus enabling family members to forward your wishes. No-one should bare the pain of a long struggle to cope with what they know will be the outcome. Life is very cruel and death brings peace to all concerned. Our area MP voted in favour of this Bill and I admired him for his honesty. Take care all of you.
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