This afternoon is Vera’s funeral, my mother-in-law who passed away 10 days ago. I thought I would share my experiences of her medical care in her last few weeks following controversial headlines about the Liverpool Care Pathway and reports that one in four families are not informed when doctors decide that terminally ill patients should be left to die.
While families can accept that a loved one is dying and future medical intervention can do little, it is natural they want to keep them alive as long as possible.
My father-in-law Roy told me that when Vera was in Addenbrooke’s Hospital, Cambridge a doctor told him they would not try to save her if she took a turn for the worse. He was very upset and I advised him to make certain the doctors had a note on their records saying this was not his 
wish.
Nobody mentioned the Liverpool Care Pathway process and how it would apply to Vera. However, when another elderly relative was dying in the same hospital last year, her daughter-in-law was told by doctors that they would be following the LCP system. This totally baffled her as she comes from Liverpool and had no idea what its connection was with Cambridge. Clearly, the name is confusing and needs to be changed so this process is easily understood when explained to grief stricken relatives.
I asked a local doctor who called to see Vera on a house visit if they were following the LCP process, and he confirmed that it was something similar. I feel doctors may want to protect our feelings as they know how distressing it is for relatives to watch a loved one die. While I cannot fault Vera’s local doctors and district nurses who were very caring, I was not keen on the paid-for care workers and their unsmiling brisk manner, watching them put on their latex gloves as they walked through her bedroom door.
Medics will judge each case through their professional eyes while families are 
governed by conflicting emotions because they do not want to see their loved ones suffer, but neither do they want to lose them. Thankfully, Vera was not in pain. As she became weaker and weaker, we hung on to every word which she whispered faintly, sometimes seeing a tear in her eyes. We chatted around her bed and tried to amuse and comfort her, but not exhaust her either. She did enjoy the company and a cousin’s wife and myself shared a glass of sherry round her bed on one of her last days – it was Vera’s idea as this was one of her favourite drinks.
Towards the end, Vera was unable to swallow fluids and we tried different ways to give her drinks – through a straw, a child’s beaker and then a teaspoon. I remembered that when my father died of cancer seven years ago, we used a sponge on a stick which we dipped into water and pressed on his lips and tongue which were provided by district nurses. Sadly, they are no longer allowed to provide them because some of the sponges came off. I hope someone is trying to remedy this problem because they are desperately needed by the dying. A clever member of staff in Boots had a great idea and suggested we tie gauze on a cotton bud and dip this in water. Roy made some up and this was what I used to moisten Vera’s dry mouth. Her eyes told me how much she appreciated it. We were advised that Vera couldn’t have a drip at home.
My father also had an NHS nurse sometimes sit by his side all night towards the end of his life as he also died in his own bed, but because of cash cuts this service is no longer available. Thankfully, the wonderful Marie Curie nurses were there for us.
I know Roy has been overwhelmed by the many kindnesses from friends and relatives and has had close to 100 condolence cards. It is going to be a very hard and emotional day for him as he remembers the beautiful land army girl he was married to for 59 years, and for my husband Stephen too who has lost his first love, and true unconditional love which only a mother can give.
*These pics were taken on one of Vera’s last outings this year when I treated her and Roy to a pink champagne tea at Peacock’s tearoom in Ely to celebrate their birthdays.
I’m so sorry to hear of your and your family’s loss, Ellee. The ‘brisk, unsmiling’ carers have perhaps never thought that, one day, they could well be in a position of dependency on others’ help and care in time!
My thoughts are with you and your family at this time, Ellee xx
A much loved elderly member of my own family was recently admitted to hospital with a minor complaint, and died there. The family is convinced it was due to negligence. Money doesn’t explain the attitudes I’ve seen in hospital.
was thinking about you all today x x
I hope the day went well. I am sure those pictures bring back fond memories 🙂 They have brought a tear to my eye xx
Also thinking about you Ellee.
I’m so sorry to hear about that Ellee. Thinking of you – take care.
So sorry about rthat loss, Ellee.
Ellee I am so sorry for your loss. I am in two minds what to think about this protocol.
But that is another story. I am sure she had a good life and I hope she was comfortable as could be for her passing.
[…] Vera and Liverpool Care Pathway […]
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I feel as though I have unwittingley taken my Mother to the Vet. I am an ordinary joe bloggs, who listens to the media reporting it as illegal to promote someones death. A visit to Switzerland would be necessary for such an abhorent procedure. Little did I know they the so called caring staff where killing my Mother with the so called ‘ liverpool care pathway’ without any consent from her or the family. I have made a complaint to the General Medical Council and the Coroner.
I was told she was crying out for my Father, they had been married Sixtey years and where never given the chance to see each other again. My Mother had chistian
values ‘thou shall not kill’.
Ginni
My mother-in-law was ‘murdered’ in a Surrey Hospital with LCP on 25 October 2009. The refused appeal judgement in the Inglis case today, 12 November 2010, clearly states ‘murder’ which clearly sets a case law precedence. We were told nothing of the use of LCP before or after her death until we Googled the meaning. What law, statute or act permits the use of involuntary euthansia in the NHS. Nobody, including the authorities, can tell us under what authority this vile practice is authorised.
My mother in law passed away on the 23 Jan 2010 after being put on the LCP. I spoke to her on the morning before she was placed on the LCP she was talking and feeling positive about being released from hospital. Hours later my husband and I received a call from the hospital saying mum is very unwell and they would suggest that we come and spend some time with her. We sat with her for 5 days she was starved of water and food and sedated. She tried in vain to talk to us it was traumatic and painful to watch. On day 2 I was given a leaflet on LCP and coping with dying. We swabbed mum’s mouth with a sponge soaked stick there were times when mum tried to eat the sponge and sucked so hard we had to spend a long time trying get her to let go of the sponge tip. I have now read the LCP leaflet given to me from the hospital it is a very watered down version compared to what is available on the net. At the end of the day mum was starved to death she was hungry we managed to feed her water using a sponge and a tea spoon. If anyone stared a dog they would be prosecuted however it seems that doctors and nurses are given free reign to play god.
Was that a hospital which replaces one that used to be called R…… General?
This is truly heartbreaking and I’m so sorry to hear of your loss. I was talking to a friend about this issue yesterday and she had the same experience when her mother became critically ill. These situations are made all the worse by medics not being open to families about the treatment for terminally-ill patients. Please do complain to the hospital authorities if you feel you have cause to.
I’m sorry for all the losses that people have had.
I have cared for people on the LCP where all the needs of the person have been met. Unless the family are in the room we go in every 15/20 minutes to give the patient fluids and check that they are as comfortable as possible.
With the right people the LCP is a good thing.
yesterday I telephoned the hospital where my father had been admitted suffering from an infection. In the morning he was stable and comfortable. Late afternoon I called again due to concerns expressed by my brother and spoke to a nurse to enquire about his treatment and illness.The nurse was vague about the infection so I threw in MRSA she defensively replied telling me he has sepsis. I was informed that death was imminent and he was receiving LCP. I’m unfamilar with those initials so I asked the nurse to clarify and when she said Liverpool Care Pathway I knew precisely what was planned for him. I told her that this wasn’t treatment for sepsis but euthanasia and that we had not given our consent to this plan and that we opposed it and why wasn’t he being given intravenous antibiotics.
This afternoon my brother dropped in and learned that my father’s insulin had been returned and he was receiving antibiotics and this man (at death’s door according to the nurse) was drinking a cup of tea and was lucid and cheerful.
His partner claims she had no understanding of the implications of The Liverpool Care Pathway.
I suspect that if I hadn’t intervened and asked a few questions and challenged the hospital – my father would be another fatality of The Liverpool Death Plan.
Louise, I am so sorry to learn of your experience. It is quite shocking. I hope your father continues to make good progress.
My mom had a massive brain haemorage last friday & we were told there was nothing to be done & LCP would be used with our agreement which my sister & I gave as mom had always said she wanted no ressucitation (she is 83 btw)I had never heard of this plan/pathway before & misheard the 1st time it was quoted, thinking it was the “liberal care plan” but basically we understood that all ‘artificial’ food,drink,drugs would be removed as death was close & we expected her to leave us fairly quickly as she was unresponsive to any stimuli & basically in a vegetative state but breathing on her own.
We are now approaching day 5 of no food/drink/drugs & having researched LCP I ended up here & decided to share my story.
I am obviously concerned that we did the right thing & after reading some other posts I am torn between two sides of the argument but in my mom’s case even if her life could have been prolonged it would only be (as far as I know) been in a vegetative state so what kind of life is that?
We can speculate on what is going on inside another person’s brain pain/pleasure/nothing but so far technology cannot read minds so all doctors/loved ones can do is guess.
I can only say that at the moment watching my mom literally starve to death is not pleasant & the fact that I agreed to it is making me sad & although I am not sure LCP is a good thing its certainly not perfect in all cases, if I could choose to end my mom’s life by a simple injection legally, I would & I’d do it myself & live with the guilt for the rest of my life because although not showing any signs of pain or distress I know she is ready to die & I can’t do anything to help.
Sorry for going on but I’ll be up at the hospital tomorrow watching my mom die very slowly & for me LCP is not quick enough!
Ian, what a terrible experience for you all, and I really feel for you and your family. This is something we can not prepare for. Please comfort your mum and speak to her, she may still be able to hear you.
Thanks Ellee.
Mom died yesterday (21/9) & although it was expected I cried for 2 hours.
Unfortunately the earliest funeral I could arrange is in 2 weeks time! I am amazed that the waiting list is so long.
Life goes on…………
Hello –
I am doing research for a BBC Radio Scotland investigation into treatment of patients who are diagnosed as being near-death and are then placed on Liverpool Care Pathway schemes or very similar. If you want to share your story (in confidence if need be) please contact me via my website.
Kindest regards,
Eamonn O’Neill
Dear Louise,
I’m currently carrying out some research for a Channel 4 current affairs documentary on the LCP. If you would be interested in sharing your own story with me, I can be contacted on libby@hardcashproductions.com
Many thanks
Libby Overton
[…] had quite a few hits recently on a post I wrote about the Liverpool Care Pathway plan. I wonder if it is because of reports about David Tracey suing Health Secretary Andrew Lansley […]
I am in the position as a healthcare professional where I use the LCP pathway, if used correctly this pathway allows for a peaceful and comfortable death. At no point in the LCP paperwork does it say to withold food or drink it does say to think of the current condition of the patient, can they swallow etc, it would be a worse death if feeding was forced and for choking to happen. The patients pain should be assessed and all appropriate analgesia should be prescribed and administered. The pathway promotes care and comfort and you work solely with the patient and what their current condition permits, on that basis if condition improves then LCP can cease and care planning can restart. Also the simplified paperwork of the LCP allows for staff to be their for their patient. Having been in the position of losing a close family member I understand how hard it is to understand the concept of death and admit to the fact your loved one may pass away but also by working on the healthcare side I can also understand that this is the area where family members begin to think of themselves as THEY don’t want to suffer the loss, so family members begin to look for every remedy to keep their loved alive but the focus is then taken away from the patient. This is where the LCP comes in as it focus’ on the needs of the dying patient and allows for comfort in their time of need. All I ask is for family members of a poorly patient to trust their nursing and medical staff because this is not considered as a quick fix, if improvement of condition can be sought then brilliant but if a patients passing is the outcome then staff only hope that the all round experience has been one of peace and comfort.
LCP should be stopped. The NHS should stop playing God! My father was put on LCP with our agreement to do so and we were not told clearly what is was all our wishes were for my father to be comfortable, pain free and to pass in his sleep NOT to be starved or die of dehydration. Luckily we have stopped it in time because he was so drugged up he couldn’t even ask for food or a drink. Especially when he has dementia and he can’t talk anyway. Thanks to the nhs my father has gone septic through a bed sore which his spine is now exposed which has caused him to have blood poisoning So well done the NHS another bloody cock up. All the time we were there no nurses even checked to see if he wanted a drink. They might aswell just of shut the door and let him die because lets face it we are only another number.
My website is http://www.eamonnoneill.com for anyone wanting to share (in confidence if need be – their own stories of relatives and/or loved-ones placed on the LCP or similar protocol.
I am doing research for a BBC Radio Scotland series.
Best,
Eamonn O’Neill
Iv recently started up a cause on Facebook about the LCP being used on non-terminal patients, If your on FB feel free to join the group and have a read. (Stop the Liverpool Care Pathway for non-terminal patients)
Also, (even those who are not on Facebook)
If you disagree with the LCP being used on non terminal patients I created a government petition to have a chance to bring it up in parliament. Please follow the link below takes 1 minutes to sign and a one click confirmation email.
http://epetitions.direct.gov.uk/petitions/18401
hi, gail stop pretending or telling lies you must be a nurse if you say you go in the room every 15 to 20 min to give the patients fluids, they cant be on the pathway. because its all taken away. on the pathway its only sedation unless their is signs of recovery. but who in the world can recover when in strong sedation. whos kidding who.
My father is terminal with lung cancer…..just over a month ago he was critical in hospital with double pneumonia. He was put on the Liverpool care pathway. I am not unhappy about this as he was so sick he was begging for his life to end. He was sedated and when he was awake was confused and hallucinating. At one stage his syringe driver had come out or was empty ( I forget) for most of the day. Another visitor later in the day confirmed this. That evening when my Mother visited my Father was communicative and even answering questions on a quiz show!!! Was this because the sedative had been given time to wear off? We were told some people have an ‘up’ before the end! We asked could they reduce the sedation and they did. My father is terminal but back at home…walking and eating and has been for a month. Had we not had that break in the syringe driver would he have continued sedated and starved until death? May I add that I cannot fault the care in the NHS…the staff were wonderful….but I am not sure the Liverpool care pathway should be used for everyone???
the liverpool so called care pathway, is not being used just for the dying, it is being used to kill patients who are not dying, the proof is in relatives,words in black and white, why would anyone write all these nightmares if not true.
My 88 year old mother died last Saturday. In a nutshell she had stage 4 cancer in the pelvic area and it was attacking her kidneys. She was in renal failure and there was no chance of recovery. She was placed on the LCP only when normal pain relief was not enough and her kidneys had failed. It was a blessing for her to die peacefully and with my father at her side. In her case I applaud the use of the LCP.
i am quite sure all these sad stories about lost loved, ones cannot be left, to not be investigated by an independant body or watchdog, i find it a very serious concern.
My Dad is due to start LCP tomorrow.
Following 3 years’ courageous battle with kidney cancer & metastases etc. he collapsed yesterday and was taken to our local hospital. His remaining kidney is failing, the infection (sepsis) and his liver & other things are not responding to antibiotics/treatment. If he was otherwise healthy he could go to ICU for dialysis, but he’s not. He’s hardly drinking and eating and managing his last few days (or hours) is the kindest thing.
I am sorry for people here who have been ill informed of LCP or had bad experiences in the midst of their grief. For those who are accusing their carers of dehydration etc., did they know that giving a dying person fluids or nutrition can actually make them feel worse because the body no longer needs them and has its own path of shutting down?
All I can say is that the staff caring for my Dad – who is too poorly to be moved to his chosen hospice and is barely awake – have been exemplary so far. They’ve kept us up to speed since he came in yesterday, and talked us through LCP today (which we were already aware of) and been kind and considerate throughout.
I am not in the medical profession. I have no bias and just want my Dad to have the best end-of-life care. My father was a pharmacist and has good understanding of his condition.
The NHS is not perfect, but without it we would be in a worse situation. If I had my way I’d swap footballers’ pay for nurses’. I am grateful for the professionals who have, and are, caring for Dad. They have my heartfelt thanks.
Dear MC, Thank you for your comment. I am so pleased to hear that during what is a heartbreaking time, that you and your family are getting the support and care you need from the NHS. I totally agree with your views about footballers’ pay and nurses. And yes, I am very grateful for the NHS too.
i find the liverpool care pathway, a very bad way to treat human beings, its a disturbing course of action, to starve and leave to die, for days by being sedated, dehydrated, and no antibiotics, it is cruel beyond believe, i have seen two in a coma, one for 10 days, the other 12 days, both fighting for breath until they died, well to be honest murdered, to save money for the national death service.
the only way to get this barbaric liverpool euthanasia pathway way abolished, is by signing the ongoing petition, and by not voting for david cameron and expenses cheats, sign the petition and vote them out at the next general election and it could help save lives.
Since hearing about the LCP I am now concerned that my father may have been a victim. After 3 month’s incorrect diagnosis of a rare skin cancer, 21 consultants appeared at his consultation. He was admitted to hospital and underwent an 8.5 hr operaton, removing tissue from his head own to his skull. I was informed that during the operation a nerve had been damaged and he was unable to eat/drink. I did not question this and he did not complain.. A month later he passed away. Did they know what the outcome would be despite my questioning.
Prior to this ‘growth’ he had an accident whilst in hospital for a minor bump on his head. Whilst in hospital he was left alone in a cubicle, collapsed and fell onto the wheel of steel trolly. I was not informed that this had happened, nor the extent of his injuries. He was not allowed to see it. He had actually around 26 stitches in his head as a consequence.
Dear Anonymous, I’m so sorry to hear about this. I think you should ask for a full report about these events, everything that happened to your father during his stay in hospital . Do you think you could discuss it with your doctor and ask for his advice? Or to a patient/carers’ support group? Good luck.