End-of-life care concerns

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