PALLIATIVE medicine experts are concerned about the implications for end-of-life care in Australia following the withdrawal of the Liverpool Care Pathway in the UK.

Many palliative care units in Australia are based on the Liverpool Care Pathway for the Dying Patient (LCP), developed in the UK in the 1990s. The Australian experts have branded the UK withdrawal decision as “political” and “a disappointment” and said it should not be repeated here.

The withdrawal followed a damning review of the LCP in the UK, which said that although, in the right hands, the LCP could provide a model of good practice for the last days or hours of life, in the wrong hands it had, for many patients, been used as a poor excuse for poor quality care. (1)

The review, which had recommended the removal of the LCP from the National Health System, had confirmed a “lack of openness and candour among clinical staff; a lack of compassion; a need for improved skills and competencies in caring for the dying; and a need to put the patient, their relatives and carers first, treating them with dignity and respect”.

UK media reports about the LCP were also damning, with claims that care of the dying in hospitals had become a national concern after campaigners said patients were being placed on the “controversial” LCP without their knowledge and in some cases when they were not dying. (2)

“The pathway aimed to reduce unnecessary medical interventions and tests in the final days of life but led to some patients being denied food, water and pain relief as experts said it was being used to ‘hasten death’”, according to one media report.

In a “Perspective” article published in the MJA, the authors wrote that an earlier UK decision to expand the LCP from a local solution for local problems to a nationally endorsed program had “occurred in the absence of robust evaluation”. (3)

Dr Raymond Chan, deputy director of research at the Royal Brisbane and Women’s Hospital’s Cancer Care Services, and coauthors said the UK review of the LCP had specifically highlighted “ethical, safety, clinical practice and legal problems, and how poorly dying is diagnosed in clinical care”.

The MJA authors said the implications for Australia from the withdrawal of the LCP in the UK were still unclear and that several questions needed to be answered.

“Are the right people put on an EOL [end-of-life] care pathway at the right time in their illness trajectory? In which settings should EOL care pathways be used? Who should have the authority to initiate an EOL care pathway?” they wrote.

“Although the intention and end-of-life care principles underpinning the LCP are sound, use of the pathway has extended well beyond the evidence base and despite the lack of any rigorous, prospective evaluation at the time of its widespread uptake”, they wrote.

The authors stressed the need for diagnosis of dying to be clear, as did the communication and compassion with the patient and family.

The LCP review was discussed in a Journal of Medical Ethics article, which said the review found that hospital staff were implementing the LCP poorly, had a lack of training and understanding about the LCP’s purpose and a “failure to adhere to what would be basic ethical decision-making”. (4)

Professor Michael Ashby, director of palliative care at the Royal Hobart Hospital, said that the decision to withdraw the LCP was “political” and he hoped it would not happen here.

“I do not think we should abandon the LCP here”, Professor Ashby told MJA InSight. “We don’t ban appendectomies because one or two might go wrong or be done inappropriately.

Dr Leeroy William, a palliative medicine specialist at Monash Health, Melbourne, which uses an adaptation of the LCP as the basis of its EOL care, said the decision to withdraw the LCP was forced by the “hysteria” generated by the media.

“I was surprised by the recommendation to withdraw, but given the hysteria in the press, I can see why they did it. They had to do something”, Dr William told MJA InSight.

“The LCP was a foundation principle”, Dr William said. “It was never meant to be a protocol, but more of a guide.”

Dr Yvonne Luxford, CEO of Palliative Care Australia, said the problem in the UK had not been the LCP itself, but “implementation, training and education”.

“I think the LCP was so tainted by bad media that it was probably easier just to withdraw it”, she said.

The Australian Commission on Safety and Quality in Health Care is currently seeking comment on a consensus statement which outlines a proposed national approach to end-of-life care in acute hospitals. (5)

The statement says it “is intended to be applied with careful consideration of the interface between clinical deterioration and end-of-life care”.

The federal government also announced last week that $52 million in funding would be allocated over 3 years to improve palliative care services and training. (6)

 

1. Independent review of the Liverpool Care Pathway 2013
2. The Telegraph 2014; Online 14 May
3. MJA 2014; 200: 572-573
4. J Med Ethics 2014; Online 21 May
5. ACSQHC: National Consensus Statement draft; January 2014
6. Assistant Minister for Health: Media release 2014: Online 29 May

5 thoughts on “End-of-life care concerns

  1. Jennifer Torr says:

    This is of serious concern to me. I suspect my grandmother was put on this fast track. She had cancer that would have eventually been terminal. Although  she was her usual sharp self, she was distressed by constipation secondary to opiod treatments for pain. She attended the hospital for assistance with this. What was discussed with my grandmother no one in the family knows. She was admitted, hooked up to a morphine pump, and NO food or fluids were delivered to her room from the moment she was admitted. In a short time she was so sedated she couldn’t converse with her family, to discuss and confirm her wishes, her understanding and her original and ongoing consent to her “treatment”. Her rapid deterioration was aeitrogenic. She died about 5 days later- from dehydration and starvation?  I later arrived from interstate to find her moribund. Only after she died did I discover that she had been distressed but essentially alright when she sought assistance. At best this was euthanasia at worst ….  She was elderly, but vibrant and she was not yet at the natural end of her life. The ramifications of her hastened death continue a decade later. 

  2. Alex Harris says:

    The above comment has nothing to do with the LCP (it remains a sad situation regardless). My overall view on the LCP is that it is more of a guide to check that all interventions being given are appropriate, and that no interventions are being missed. At no stage does it suggest that pain should be managed to anything more than what is required to keep a patient comfortable. It is not a fast track.

    The most important intervention at all stage of palliative care is good communication and realistic discussions. The LCP can be used as a trigger for a discussion when someone is clearly coming towards the end of their life, but I think any doctor who says ‘I am going to put you on this pathway’ is an idiot. 

    It is a tool, nothing more.

  3. Paul Jenkinson says:

    Bandicoot’s feelings about  what he/she believes were the circumstances of his/her dear Grandmother’s death  cause me to feel  quite sad.

    The sole purpose of palliative care is to make the rest of a dying person’s life as comfortable as possible in every way possible.

    That never includes the primary intention of shortening a person’s life.That would be too easy and our patients deserve much more than that.

    The Liverpool Care Plan might help in some situations for usually less experienced doctors to use to make some decisions.

    But it is just a guide.

  4. Sue Ieraci says:

    Things can go awry when sensible guidelines are used inflexibly, or interpreted by people without the judgement or experience to handle a complex human situation. Just like any clinical guidelines, wisdom is required in the application. No matter how good the guideline is, it doens;t  put an old head on young shoulders.

  5. Kim Hansen says:

    Bandicoot I feel somewhat the same as you about my father-in-law’s death. There was no communication with his immediate family by his bedside about the decision to put him on the LCP. His family thought he was improving while his death was hastened by lack of fluids. Had he presented at my own hospital, he would have been receiving full care in ICU, at least for 48 hours. While ICU use is another debate, an EOL pathway should be used with full disclosure to the family…not as a fast track to the morgue.

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