The LCP was developed to assist in the care of patients entering the last hours and days of life but there have been claims that it has been used to end the lives of people who were not imminently dying (but also see balancing comments here).
Understandably this has led to a large amount of adverse media coverage and investigations into individual cases of alleged abuse are currently on-going.
Responding to the media attention given to the clinical pathway over recent months the APM President, Dr Bee Wee, acknowledged for the first time this week on her blog that there are ‘some controversies about the strength of the evidence-base’ supporting the use of integrated pathways like the LCP and also ‘some very real anxieties amongst the public and some professionals’ about its use.
Instead of ‘simply defending the concept or reiterating that if only it were used properly it would be OK’ she suggested that ‘it might be more helpful to stand back a bit, identify and explore the concerns properly, and find ways of addressing those concerns and improve practice’.
The APM intends to announce details of this new work, which will be carried out in collaboration with other organisations, soon.
The Liverpool Care pathway has come under sustained attack by certain sections of the media in recent months prompting the recent publication of a Consensus Statement by 22 organisations, including the APM, supporting its appropriate use.
Both Dr Bee Wee and the Care and Support Minister Norman Lamb have written to the Daily Mail in the last week to express their concerns about media coverage. The letters are difficult to find on the Daily Mail website so I have reproduced them below.
It is good to see the APM now contributing to this important debate and the fact that they have clearly acknowledged that there are real concerns that need to be addressed will hopefully move us towards some resolution of the current controversies.
Letter to Daily Mail from Drs Bee Wee (President) and David Brooks (Vice-President) of the Association for Palliative Medicine (22 October)
Dear Editor
We are concerned about the irresponsible journalism of recent scare stories in this paper about care of patients who are approaching their last days of life.
Care pathways for patients in the last days of life and Electronic Palliative Care Coordinating System (previously known as end of life care registers) are both designed to ensure that patients get the quality of care they need in their last days, weeks and months of life.
When properly used neither should deny anybody treatment or care that may benefit them, including food and fluids, and neither should lead to hastening death. Both should ensure that patients and carers are more informed about the current state of the person’s illness and life expectancy, and that their views are taken into account.
We accept that use of any pathway or care tool requires adequate training and in some areas there are inadequate specialist palliative physicians and nurses to provide the training needed by the non-specialists who provide the majority of this care.
There may be individual cases where the tools intended to promote good care have been poorly applied leading to concerns for relatives and carers but these individual stories should not be blown out of proportion. There is a risk that scaremongering due to individual examples of bad use of good tools leads to depriving the silent majority of patients the care they should expect in their last days of life. What the Mail and other media need to highlight is the need for adequate specialist palliative care and training resources to ensure that care is delivered well and appropriately at the end of life so that patients die in comfort and dignity.
Yours sincerely
Letter to Daily Mail from Care and Support Minister, Norman Lamb (19 October)
Dear Editor
Your headline, '3,000 doctors putting patients on 'death lists'' (Thursday 18 October) is wilfully misleading.
The GP End of Life Care register is no more sinister than other lists of those with diabetes or heart failure who need additional care. It is a way of making sure that planning so the patient's wishes come first and ensuring that people are cared for with dignity and appropriately at the end of their life.
You also insist the Liverpool Care Pathway systematically denies treatment to those who are dying. Nothing could be further from the truth; it is simply about ensuring that patients receive whatever treatments are right for them in the final days and hours of their life. More than 20 leading organisations including the Royal College of GPs, Marie Curie Cancer Care, and Age UK have already jointly signed a statement supporting the Pathway and addressing your misrepresentation. I am copying this letter to them.
Almost three quarters of people say they would choose to be cared for at home, in their own bed. But just over half actually die in hospital. Your article was wrong to assert that NHS organisations are moving patients away from hospital in order to save money. By preparing an End of Life Care plan, patients have the best chance of having their wishes met – surely something everyone can agree is a good thing.
Despite the fact this work gives patients better care I am concerned about reports some doctors are not properly communicating with their patients. I cannot stress enough the importance of involving patients and families in their care. I have asked officials to look at how best we can ensure that this always happens. I will also be meeting patient groups to ensure that their interests are always paramount. I am very happy to discuss any of these issues directly with you.
Yours sincerely
I thank the Daily Mail for raising awareness of the inappropriate use of the LCP, it is not scare mongering it is, in a lot of cases, the truth. My brother's story was published, he lived another 5 weeks at home after we took him off the LCP. He was nursed on an oncology ward that specialises in palliative care.Prediction of date of death is hardly scientific and witholding fluids is barbaric. I've been a nurse for 39 years and I welcome a review and more awareness raising. Patients have rights too!
ReplyDeleteThe Daily Mail's headline claim that the LCP was responsible for 130,000 deaths a year was clearly false, but it is equally clear that there have been abuses with people being placed on it who were not imminently dying.
DeleteHopefully the APM investigation will shed more light on all this and lead to some more meeting of minds and better care.
I've seen patients on the LCP and fluids. Being on the pathway doesn't have to include the restriction of all fluids. In fact, I thought the whole point of the LCP was to make the patient as comfortable as possible. I'm so sorry to hear of your bad experience.
DeleteI am look onward just before your additional post almost immediately.
ReplyDeleteWho the hell are the APM to investigate anyone? Its a charity con organisation! They have unaudited accounts at the charity commission....
ReplyDeleteDoH press releases described the APMGBI as ‘representing’ or ‘having a membership of 1,000..’ or ‘..over 1,000..’ palliative care practitioners in the United Kingdom. This implies that they are highly knowledgeable in this field, and are best able to provide input to a government review of the pathway, which has been exported to over 22 countries bearing both the NHS and DoH logos.
However, membership is in no way confined to registered doctors..their website says:
“The APM exists to promote the advancement and development of palliative medicine and is recognised as
representing physicians at all grades who work in palliative medicine and those with an interest in the specialty”.
Its open to almost anyone ‘interested’ in the specialty –with £180 to throw into the unaudited accounts! You could get full membership with an Aromatherapy or Homeopathy Diploma. More than half of its members pay a reduced subscription, indicating they are unqualified students (compare unaudited accounts at http://www.charity-commission.gov.uk/Accounts/Ends72%5C0001053572_ac_20111130_e_c.pdf to membership fees at http://www.apmonline.org/page.php?pageid=146 .
Its also a a worldwide membership, so some members dont have qualifications they could practice in the United Kingdom with. For all we can see, membership could including people who had been struck off by the GMC for misconduct or bad practice, Jimmy Savile, the Krankies, ‘friends of the hospice’, necrophiles, or even medical practitioners who harves organs from death penalty prisoners in Chinese jails and sell them.
And why no Public Inquiry with evidence on oath , in public ???