Advice Needed on Liverpool Care Pathway

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Jacob7650

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Greetings. I am a new member and am hoping to get some good advice about the Liverpool Care Pathway (LCP), an end-of-life care scheme in the UK.

My mother is 83 and is in the last few days of her life in hospital. Her kidneys have failed and she has been put on the LCP. Yesterday I requested that the Catholic chaplain perform the last rites. I have taken her a Rosary and continue to pray for her recovery or at least a natural passing in accordance with Catholic beliefs.

I have read many bad things about the LCP and how it can be used as a form of euthanasia. I’ve also read that it goes against Catholic teaching, specifically Evangelium Vitae.

Now, it is very likely that my mother will pass soon especially as she is on the LCP as it involves the withdrawal of food and water, which many Catholics would regard as a basic human right and not a removeable clinical treatment. I am prepared for this mentally and spiritually and know that she will be going to a better place. I do not fear her death but believe that she should be allowed home to die naturally in as little pain as possible amongst the bosom of her family.

My sister (no longer Catholic) has OK’d the use of LCP and I have repeatedly told the hospital that I am vehemently opposed to it and that she should be removed from it as there isn’t a consensus between her children. They refuse to budge and say that she will remain on it on their authority, that it’s in her “best interests”. I had a long meeting with a senior doctor yesterday who dismissed all my objections, most alarmingly my objection that such a scheme is against her religion.

What are my options here? Can they overrule my objections like this? Would it be a good idea to contact a solicitor or even the police to attempt to save her from this fate? Time is of the essence and I feel like I’ve done everything I can do.

All I want is for her to return home or to go to a Catholic hospice where at least I know she will be cared for properly. I am going to visit her soon to spoon-feed her some water as I know they aren’t bothering to hydrate her. They have effectively given-up on her.

All answers and comments will be greatly appreciated.

Jacob.
 
All things being equal, I would suggest that you consult a solicitor and/or ring the diocese to see if there’s someone legally trained they can get hold of for you with a view to informing the hospital that you will be taking them to court if they do not abide by your wishes and the wishes of your mother.

Have you spoken to your mother? Is she able to express her wishes to you?

I am based in East Anglia, and if there’s anything I can do to help you, please message me.

[Edit]

NB: I am not a medic in any sense, but do please find out if providing water to a person whose kidneys are not working is safe. It may be that this causes more problems than it solves - again, your diocese might have an independent doctor you might be able to take advice from.
 
Thankyou Dex. I’m online at the moment looking into the possibility of finding a solicitor who is either Catholic or has a specialty in cases arising from LCP. I also will ring the diocese shortly, that’s a good suggestion.

I went in yesterday to ask my mother what her wishes were but sadly she was so heavily sedated it wasn’t possible.

I take your point about giving water to someone whose kidneys have failed being potentially unsafe. But I believe there is a certain amount (approx. 500ml) that can be given as a basic minimum in order to replace water being lost through perspiration and breathing.

Thankyou for your kind offer of help. I will keep you updated.
 
Remember, end-of-life care in a hospital environment will differ - even on the LCP - depending on the nature of the patient’s illness.

The Church has no problem with medication to prevent suffering, even if a by-product of that medication is hastening the end. If your mother is sedated in order to prevent pain and suffering from her underlying condition and as a byproduct of that she is unaware of her situation and unable to feed herself and quench thirst, then the fading-away that leads to death will happen on its own and it would be a natural progression. If there is no hope of an improvement in her underlying condition, then prolonging her life by artificial feeding and hydration whilst she is still under sedation would run counter to the dignity we wish for in a good death for any of our loved ones. She would only linger, unaware, in this world while we here put off her entry into the next.

The point at which treatment related natural decline turns into active neglect that unreasonably hastens death is a very difficult line to determine. I can’t tell you whether this is neglect or within the bounds of acceptable treatment because I am not in your position and I don’t know the pain your mother would be in if she were not sedated nor do I know the prognosis or the outcomes, but the moral case that, to the best of my knowledge, satisfies the Church is that which is above.

In all charity to yourself, do try and step outside your situation for a moment or two and try, as best you can, to get a dispassionate view of it all. I know it’s dreadfully hard: I’ve been in the situation of watching my mother die as well, although thankfully without a sibling who disagreed with the right way to do things. You might just be trying to hang on too hard and there might not be as much active neglect as it feels to you right now, and as much as you feel that your acceptance of the situation is rational and calm, in all likelihood, nobody about to lose a parent and knowing it is rational and calm. It’s frightening, unknown ground over which we all have to travel and none of us can be completely unfazed by the experience.

I tell you this only out of care for you to provide you with another possible perspective. I’m NOT telling you you’re wrong. I want nothing more than this situation to be resolved so that you and your family may find a peaceful and spiritual atmosphere for the support and comfort of each other and your mother.
 
Please remember that the LCP is only as good as the staff who use it .

My husband was placed on it a few days before he reposed .

His room was kept quiet and peaceful , yes all active treatment was stopped - his heart was failing - it had been for the last 3 months , his kidneys had failed and certainly death was close. He was given tender loving care by wonderful caring nurses and Doctors.

Pain relief is given if it is required - it’s not always .

He was given a very dignified end of life which is what he would have wanted. He did indeed sleep his last moments away whilst I held his hand.

The LCP can sound very regimented - but it is set up so that all who care for the patient know what is being done and why - good nursing care in the UK has always been to allow death to be a peaceful pain free outcome.
 
From the Bishops’ Conference of England and Wales:
catholic-ew.org.uk/content/download/21883/140058/file/Consultation_Draft_Guide_to_the_Spiritual_Care_of_the_Dying_Person.pdf

They do point out a few important things:
  • withdrawal of treatment, including hydration and nutrition when it is of little/no benefit or even harmful, at the end of life can be licit, but is a prudential judgment, and is not to be carried out with the intention of hastening death. This is different from withdrawing food and hydration to someone in a stable vegetative state.
  • the Liverpool Care Pathway is not itself contrary to faith and morals, but nor is it a guarantee of morally licit palliative treatment.
I think there is a more important matter here than hiring lawyers or fighting your sister, and that is seeing that your mother leaves this world with a loving family around her, with access to the Sacraments and a good death, and an awareness of her loving Saviour, to whose bosom she is about to go. I know this must be a difficult time for you.

Further, your witness to your sister of a faith that is greater than death is going to be an incredible work of grace at this time. Do you really want her experience of Catholic attitudes to death to be that of an angry man and his legal team harassing the doctors who are trying to make her mother comfortable?

You have made your objections, and they have not been handled sensibly. Your conscience, and your mother’s, are clean. A time will come when your sister, and the doctors, will have to face up to any mistakes they have made, and ask forgiveness. When that time comes, the Church, and Christ, her Bridegroom, will be waiting with open arms.

Some things, no-one can control - the final few pages of the document above are a meditation on accepting the ‘mystery’ of death. I will pray for you.
 
Thank you all so much for your comments. My mother is still with us thanks to the mercy of God, and thanks to all the prayers and best wishes you have been sending.

I did consult a solicitor yesterday to check my options re getting her out of there and into a hospice or back home, but it seems that the doctor’s word is final and that she will be staying there.

I also phoned the diocese and spoke to a priest who reassured me that the LCP can be compatible with the Catholic faith if used correctly and with the patient’s best interests in mind. The problem, as has been mentioned, is that it is sometimes mishandled or even abused. I suppose I will never know for sure whether the LCP has been used correctly and with the best of intentions in my mother’s case. I pray that it is.

I visited her yesterday and while heavily sedated, she still seems to be aware of us around her, which is a blessing. We played her some of her favourite songs, spoke to her, soothed her and she seemed to respond.

The issue of her not receiving water is still one that I cannot accept or appear able to change. However, my sister and her family are now beginning to have reservations about the LCP and the withdrawal of water and are coming round more to my point of view. This has helped immensely as today she and her husband have phoned her GP who has agreed that my mother needs at the very least to be re-assessed. They have arranged a meeting between the family and her doctors, including her GP, for 3pm today. This will be beneficial I believe as I think they are more likely to listen to our concerns if we have the support of her GP and if the family are now on a somewhat similar page.

So I will keep you updated. I thank you all for your advice and prayers. They have given us a real, spiritual boost and are now having a tangible, positive effect on events.

Jacob
 
It is with great sadness that I inform you all of my mother’s passing yesterday.

Pauline lived a long and fruitful life and I know that she has gone on to a better place.

I thank you all for your prayers which were such a comfort for my family and a source of spiritual sustenance for Pauline. Pauline survived for far longer than expected, enabling us to visit frequently, pray for her, talk and sing to her, to say our final farewells and to come to terms with her passing. It also gave me time to do everything I could to save her - I took advice from many different sources, researched all I could and had lengthy discussions with the medical staff and my family. When it became clear that Pauline’s imminent passing was inevitable, I did my best to comfort her and intensified my prayers. The Rosary was such a blessing at this time; I was reciting it and meditating upon the Mysteries every day by her side. I was in contact with the Catholic chaplain who very kindly performed the last rites some days ago and has said prayers with me by her bedside since then. Those extra few days that Pauline was granted are a testament to the power of our prayers and to the love and mercy of Almighty God.

It is my fervent wish that Pauline was able to die a happy death, a death in a state of grace. I believe Pauline would have shared the sentiment of St. Teresa of Avila: “I want to see God and, in order to see him, I must die”.

Jacob
 
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