Pathway to a peaceful death?

One claimed “the NHS kills off 130,000 elderly patients every year”.

Another headline screamed “now sick babies go on death pathway”.

And “scandal” was the word used to summarise the Liverpool Care Pathway for Dying (LCP) - a system of care intended to ease the final hours of patient's close to death.

The biggest concerns centred on disturbing claims that loved ones went on the pathway - which can involve withdrawal of food and fluids - without their consent and that some were not dying.

One professor, Patrick Pullicino, from the University of Kent, even declared that death on the LCP was a “self-fulfilling prophecy” and a form of back door euthanasia.

But those on the frontline in Southampton are angry that a pathway designed to make a patient's death as peaceful as possible has been “demonised” unfairly.

University Hospital Southampton (UHS), which runs Southampton General Hospital, Princess Anne Hospital and the Countess Mountbatten House, was one of the first waves of trust's to implement the LCP five years ago as they aimed for better care for those in their last hours of life.

Carol Davis, lead consultant in palliative medicine, said: “We introduced the LCP because we believe it improves the care of the dying.

“If someone is dying, you only get one chance to get it right and we want to make sure we are doing that. It is about making dying as peaceful as possible as it can be for both the patients and relatives.

“The most important message of all is that people don't die because someone has put them on or considered putting them on the LCP.

“I think the LCP has been demonised recently, scaring people into believing that it is the pathway that makes them die but all the pathway means is that the focus of care is changed after it has been acknowledged that the patient is dying.

“Once that decision has been made, instead of having a patient having their regular observations done, such as blood pressure, pulse and temperature that are no longer helpful, nurses come to see the patient to speak to them, to see how they are and if they need anything to make them feel more comfortable.

“Until recently about 50 per cent of all adults dying in Southampton General Hospital, Princess Anne Hospital and Countess Mountbatten House have died on the LCP, around 750-800 a year.

“But over the last few months, since the negative media coverage started, that percentage has decreased as patients and relatives are concerned about it and in some cases doctors and nurses are anxious about bringing it up due to the coverage.”

A major concern expressed by those criticising the pathway were claims that once on the LCP patients were effectively starved to death to speed up the process.

These accusations have been dismissed by Dr Davis, who fears the myths surrounding the LCP are stopping people from getting the appropriate care they need in their final hours.

She said: “Once someone is on the LCP they will be in their final few days, or even hours and when somebody is actively dying their body no longer manages food and fluids like normal.

“Often fluids can make the patient feel more uncomfortable and cause more problems because the body does not use fluids like they used to, it can collect on the lungs or cause swelling in the legs and arms, causing great discomfort.

“A main worry for relatives is thirst, but this can be easily dealt with but keeping the patients mouth moist and using Vaseline on their lips.

“There are occasions when we do continue feeding or giving fluids, but most of the time the assessment is that they are dying and any amount of food or fluid is not going to make a difference or could in fact make things worse.

“It is not a case of starving patients to death, when someone is dying the body doesn't use food as normal.”

And while many fear that once a patient is on the LCP there is no turning back, Dr Davis has experience of patients who have rallied round and the decision has been taken to take them off the pathway.

“There's a feeling that once you are on it you are bound to die but that is not the case”, she added.

“Some people do come off it. Some patients rally round and do get better, so the LCP doesn't make you die like many of the myths seem to suggest.

“It is a flexible process that ensures regular reviews every hour or four hours are made, to assess what the patient needs and change things if necessary.

“We even had one lady a few weeks ago who was put on the LCP and she started to get better.

“The medical team realised she needed to be taken off it and she refused because she thought the care she was receiving was fantastic.

“She loved the fact the nurses came and saw her every four hours. In the end we had to take her off it and she was very cross about it. So it doesn't always mean death.

“And even when it does, we receive many thank you letters from grieving families about the level of care their loved one received, so many people do have positive experiences.”

Other accusations have surrounded the issue of consent, questioning if patients and their relatives are fully informed of the decision to put a loved one on the LCP.

But Dr Davis reassures that one of the main focuses of the LCP is communication with all those involved with the patient.

She said: “We would expect the use of the LCP to be a natural progression from discussions with patients, if they are well enough, and their families about approaching the end of life and the uncertainties associated with that.

“At UHS we want to provide patients, families, carers and UHS staff with assurance that the LCP is commenced following an open discussion, where possible, with the patient and their family.

“It is very important that ill people let healthcare staff know who they want us to talk to if they are too ill for us to have conversations with them.

“Sometimes there may be disagreement but ultimately we have a duty to act in the patient's best interests.

“We have to gather all the information about the patient and we have to make a judgement on what is best for them.

“If their family are against the LCP it might be in the best interest of the patient but if it is deemed to cause excess anxiety for the family involved we would not do it.

“But I must stress, the LCP is only considered once a patient is actively dying.”

The pathway is deemed so important in the city that it is currently being extended and more education is being provided by the trust's team, working with community nurses, to ensure more nursing homes and now residential homes are implementing the plan properly.

Nicola Andrews, palliative care nurse specialist and lead for nursing home education, said: “NHS Southampton City have agreed to fund another member of staff to help extend our education service.

“I have so far supported around 25 nursing homes to introduce the LCP properly and this new post will help support residential homes who request help. It is brilliant that health bosses have recognised its importance by supplying this funding.”

And while this programme is being expanded, the hospital trust is only one of 20 in the UK to recently launch a new pilot scheme, called the Amber Care Bundle, aimed at further opening up the lines of communication with seriously ill patients much earlier.

Dr Davis said: “The Amber Care Bundle is something we are piloting in Southampton for patients who are at risk of dying within six to eight weeks. “While the medical team are still striving to treat the patients, this is about firing a warning shot to them that treatment might not work.

“It is about saying to the patient that we are trying all we can but it might not work and if it shouldn't what are their wishes. Doctors are all too often accused of giving a false picture and this is about opening the lines of communication.

“Many very ill people never get the opportunity to say what they want because people don't like talking about death, but this gives patients and their relatives to prepare for the worst and share their final wishes.

“So far the feedback we have had from relatives has been very positive.”