A good death

[2022minks]

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

[NieceByMarriage]

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.

[2022minks in reply to NieceByMarriage]

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

[Readlots in reply to 2022minks]

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.

[2022minks in reply to Readlots]

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.

[ThreeSmiles in reply to NieceByMarriage]

Excellent post.

[RugbyMama]

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.

[Chihuahuaslove in reply to RugbyMama]

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.

[Smegmer in reply to RugbyMama]

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!

[2022minks in reply to RugbyMama]

Sorry to hear this xxI think it is such an important part of a life limiting disease to have conversations on death and to get patients to have those conversations in addressing their affairs. But I also know for some they can't take in the prognosis, my mum always thought she could beat it, even though I was with her when doctors told her the truth on her condition.

Witnessing what our loved ones go through also gives us insight to how we might cope if it was us in that place.

I think we have to accept everyone will have different views on this and as long as an individual has a choice their wishes should be followed even if its not what those around them would want.

[Chihuahuaslove]

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.

[Etymolog]

Hi

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.

Lx

[2022minks in reply to Etymolog]

My mum was diagnosed at decompensated stage and had an expectation of a couple of years to live, she survived 5 years, even nearing her death the hospice team normally enter in a persons last few weeks of life but she actually had 8 weeks of hospice care, so it's fact that only an indication can be given because everyone is different and some people can pass very quickly where as some travel on for a longer time.

[Aotea2012]

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.

[2022minks in reply to Aotea2012]

I think one of the best things that could come out of this is to get liver patients high end pallative support, I know so many hospitals over the last 5 years are really trying to improve their packages of care. British Liver Trust pamphlets are avaliable on more Liver wards.lots of things kick into place if a patient is despatched from hospital once the pallative team are involved. If you are going home to be cared for the pallative team make sure specialist beds with a pressure mattress in installed, as well as many other occupational health support items. Your community nurse team normally assess patients for doctors and hospice nurses will assess to implement support as the right time. So even when you are in a community setting our health support network kicks in. One thing we were shocked about with hospices was their lack of bed space, if you opted to go into a hospice you might end up in a care home facility, so if you do have family support around you being able to die in your own home can be a better way to go and in hospice at home help and community nurse support you can have a good death xx

[Aotea2012 in reply to 2022minks]

The hospice sector do outstanding work. Their approach these days has been to move to home care rather than traditional bed models. This gives people the opportunity to die at home with support from skilled clinical staff. Their funding sadly is far too precarious. They rely on some grants/contracts from the NHS coupled with charitable donations. A combination of challenged NHS funding and the cost of living crisis has meant that costs have been rising but funding reducing. They need secure permanent funding to fully function and this will need to be part of the parliamentary debate.

[2022minks in reply to Aotea2012]

Yes they really do amazing work xx

[Pie-eater]

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.

[Readlots]

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,

[2022minks in reply to Readlots]

It is good to get views from everyone because for a community effected by Liver disease whether you have it or you have cared for a loved one we can only help others by talking about our experiences in helping others. Get that paperwork done it's good to get wishes in place, even if you are someone not affected by an illness future planning is today something most of us think about doing xx

[Readlots in reply to 2022minks]

So true, I have liver disease too so I know how important it is. Need to get it done.

[NorbertGrubbins]

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.

Thank you again for helping start this discussion

[2022minks in reply to NorbertGrubbins]

Definitely mental health really needs more research and support for everyone with liver disease as everyone can have very different levels of distress with this and it can worsen towards end of life. Early future planning really needs to be put in place before a patient really starts to decline xx

[Readlots in reply to 2022minks]

And livers are notoriously unpredictable…

[teletonetapper]

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.

[2022minks in reply to teletonetapper]

Any support we can get from our local MPs supporting patients with liver disease in their own community is so key.

[plazademerced1]

After careful planning my partner drew up a plan for end of life care in our local hospice to look after him when he became seriously ill.He had planned to go to Dignitas before his symptoms got worse but the illness took over too fast for him to travel for the death he requested. However everyone assumes (me included) that hospice care is always first rate, but i was bitterly disappointed to discover that not all hospice care is the same.Nursing staff went missing from the ward as he was dying leaving me to frantically search for help as he gasped for air alone in his room. by the time I found a nurse he had died alone and seemed to have choked on his terminal secretions.When i complained about no nursing staff on the ward and emergency help buttons ignored the hospice denied it had happened The CQC which oversees hospice regulation does not investigate individual complaints and leaves it to the hospice providers to investigate themselves!!Unlike the NHS there is no independent complaint system required for hospices in UK. So the argurment for people who are against assisted dying relies totally on the trust we place in hospices to provide a good death, but my experience is the opposite and a system of individually managed hospices without any effective oversight wnen thing go wrong is frightening too

[2022minks in reply to plazademerced1]

Sad to hear this happened to your partner and a truly awful experience for you, sending you some hugs. To not only contend with losing your loved one I know this would have left you devastated and angry. I hope you will consider writing a letter of complaint to the hospice manager and copying it to his gp, gastro consultant and your counties health board. If in all to notify of your partners experience but also it may help your own peace to feel you have officially stated a complaint. Thankyou so much for sharing xx

[Readlots in reply to plazademerced1]

So sorry to hear you had this experience. Grief is bad enough with a good death, without having such an awful experience. Big hug