Liverpool Care Pathway: 'They told my family I was dying'

Kathleen with her granddaughters Helen and Alison

The Liverpool Care Pathway was developed to support patients as they near death. But the reality for patients and families has been mixed.

The system, which can involve withdrawal of medication, food and fluids, was developed at the Royal Liverpool University Hospital and the city's Marie Curie hospice in the 1990s to provide a model of best practice in the care of dying patients.

Critics dubbed it the "road to death" and accused the NHS of killing off thousands of elderly patients. Supporters say it helped their relatives have a peaceful and dignified death.

Last month, an independent review recommended the LCP be phased out in England, within the next six to 12 months.

One patient under the LCP was 90-year-old Kathleen Vine. Four months after doctors at a hospital in the south-east of England used it to care for her, she is back at home and in good spirits.

Her granddaughters, Helen Bishop and Alison English, say the LCP was used as a justification for sedating Mrs Vine and denying her food and water.

"Nan didn't want to die, it wouldn't even have been euthanasia. So, as far as we're concerned, it would have felt to us as if our Nan would have been starved to death and killed," Alison said.

Mrs Vine was taken to hospital with a dislocated shoulder, and a few days after being admitted she developed pneumonia.

"All I remember is they weren't feeding me. Up above my bed they put 'nil by mouth' and I was begging for food," she recalled.

She said that when she asked doctors and nurses for food, she was ignored.

"I was being left to die. If it hadn't have been for my family I would be dead now. I would just have been another statistic on the books."

Her family were told she had 48 hours to live but when her granddaughters visited her in hospital they said she did not look like someone who was dying.

"Nanny was sitting up in bed and she was saying, "I'm really hungry, I'm really thirsty," said Helen.

"We were ushered into an office with five medical staff and told about the LCP and that Nan was very elderly and her system was shutting down and there was not a lot they could do. So they would withdraw the food and meds and let her go peacefully.

"We said, 'but she's got a dislocated shoulder, how can this happen?' And they were saying, 'she is very old' and we had five people staring at us and it was very intimidating," Helen said.

The sisters said they were never told the reason that Mrs Vine was supposed to be dying.

"I spoke to the nurse and said I need to know what she's dying of. I have a science background and I need to see evidence. Show me some stats now to explain why you've given up on her," said Helen.

"She was pleading for water. The nurse said 'I've been told I can't give her anything.'"

The recent independent review for England, 'More Care Less Pathway', found that the LCP was regularly used as a justification for withholding food and water.

But John Ellershaw, a professor of palliative medicine who led the team that developed the LCP, told BBC Radio 4 that should not be happening.

"Nowhere does the Liverpool Care Pathway say you must withdraw hydration or you must withdraw food. What it says is you should be encouraging patients to take food as appropriate and oral hydration as appropriate.

"If the patient is unable to take oral hydration then you should consider whether artificial fluids are appropriate."

"I think if healthcare professionals are telling relatives or patients that they can't have hydration because the LCP says they can't, then they're not reading the guidance or interpreting it correctly," he said.

The day after their grandmother had been put on the pathway Alison and Helen were visited by an end-of-life nurse.

"He asked if we had thought of a funeral and how to tell our daughters… I was saying I just can't believe she came in with a dislocated shoulder and now we're being told she's dying, but we don't know what she's dying of.

"At that point Nanny woke up and she had a full conversation with him… She flirted with him, telling him what lovely eyes he had, asking if he's married, does he have children. Later I said to him, 'That's not a dying person. She's chatting you up. This can't be right."

Alison and Helen didn't want to complain as the nursing staff were "brilliant", but said they got the impression that "the staff's hands were tied and they had to do what they were told. When we first found out she was put on LCP the nurses seemed visibly shocked. One nurse shook her head in disbelief."

They both agree that for terminally ill patients the LCP can be a good thing, in that it provides a less intrusive way to spend one's final hours.

But in their grandmother's case they felt that the medicine and food that she needed to recover was being withheld.

"When she was on morphine she was confused and not making sense - which was totally out of character. But they took her confusion as a sign of dementia.

"We were brought up to think that doctors and nurses know more than us about medical matters. So, our initial reaction was to believe the medical staff and we were almost made to feel silly for questioning them," said Helen.

"But what we were saying was there's one thing we need, to be comfortable with you continuing not to feed our Nan, we need to know what she's terminally ill with. The LCP is for terminally ill people, so what is she dying of?"

But the medical staff could not tell them, apart from the fact that she was old.

In a statement, the hospital trust said: "Diagnosing a patient as having reached the end of their life is not a simple or straightforward task and we recognise this.

"As such, when a decision is taken to place a patient on the Liverpool Care Pathway, it is done so with close monitoring and review. If a patient shows any signs of improvement, the Liverpool Care Pathway is discontinued.

"Use of the pathway does not mean that food and drink are withheld. Staff will always assist patients on the pathway to eat and drink for as long as they are safely able to do so. This is also subject to regular monitoring and review."

Following the questions raised by Mrs Vine's granddaughters the hospital decided to start feeding her again and she quickly recovered.

She said she feels lucky compared to the other elderly people who were on her ward. "I had my family there, but a lot of people didn't have family."

But not everybody has had a bad experience of the Liverpool Care Pathway.

It is now four months since Sam Long's 69-year-old mother died in the Royal Berkshire Hospital in Reading. She was admitted after suffering a brain haemorrhage that left her unconscious and unlikely to survive - according to specialists from two different hospitals.

"My mum had a very peaceful passing - clearly the LCP can be used to make sure that people can die with dignity and that families are given time and space to come to terms with what's going on," Sam said.

"As far as I'm concerned the essence of Mum had gone before we got to the hospital. My observation of her over those three days was that she was dying on a cellular lever. I think if that's the inevitable outcome then people should have the choice to be able to pass pain-free."

She said that, afterwards, reading stories in the newspapers about patients being deprived of food and water she "felt sick".

"I am not at all dismissing any of those experiences but it was so different from our experience. I did question, had we done the right thing? Some of the stories that I read, for those families - that must be hell.

"I read things about hospitals being set targets for putting people on the plan, and I thought 'was my Mum part of some target?' But I never felt that the nursing staff had given up on her."

Sam has concerns about what will replace the LCP.

"My Dad says if he becomes terminally ill he wants to go on the LCP like Mum. But he can't, and I think that's a great shame. I certainly don't think it should be dismissed out of hand."