The Consultant Nurses in Palliative Care Reference Group, Help the Hospices and the Association for Palliative Medicine of Great Britain and Ireland (APM) have all voiced their views about the recent end of life care pathway debate.
Labelling recent media coverage as ‘counter-productive’, ‘sensationalist’ and ‘inaccurate’, all three organisations have individually reiterated their position of support for the LCP.
‘We wish our voices to be heard because we have extensive experience of the care of the dying and of using the guidance of the Liverpool Care Pathway to provide and measure the quality of that care,’ the statement from the Consultant Nurses in Palliative Care Reference Group said.
‘The LCP was not introduced to ‘Clear the NHS of the old and the infirm’, as has been cruelly suggested by the Daily Mail.
‘We deplore poor care for the dying and insist that society does all it can to alleviate the physical, emotional and spiritual distress that can occur during the days and hours that preceed death. Equally we deplore the counter-productive comments made in the media which describe care of the dying as killing. Nurses and other health professionals are tending to the dying and their families every day and every night of the year. It is deeply offensive to public servants who abide by clear codes of conduct and the law, to describe their dedicated work in this way.’
The statement said future patients and families’ distress is increased by the media reports, and that heightened fear among patients and their families has already been noticed since the recent negative media coverage.
National clinical lead for Help the Hospices, Heather Richardson, echoed the sentiment, saying: “Recent media coverage around a small but distressing number of stories has been sensationalist and at times inaccurate. It risks causing unnecessary distress to people at one of the most vulnerable times in their lives and may even prevent people from receiving the care that they need.”
The president (Dr Bee Wee) and vice-president (Dr David Brooks) of APM wrote an open letter to the editor of the Daily Mail, reinforcing their position of support for the LCP. The letter is in response to an article and opinion piece published by the Daily Mail on 25 October 2012 and states:
‘The claim … that the Association for Palliative Medicine (APM) is breaking rank with the public stand of other medical bodies, is not correct. The APM is a signatory to the Consensus Statement on the Liverpool Care Pathway for the Dying Patient. Our position on this remains unchanged.’
The letter states that the APM will be joining other organisations to continue to improve practice.
Improving practice through training and communication
Help the Hospices has also issued a response, clarifying the role of the LCP in hospice care and calling for more training for professionals who use the LCP in settings other than hospices.
“Help the Hospices believes that the LCP has played an important role in improving the experience of people who are dying and we support the use of this tool where staff have been trained appropriately in its application,” Heather Richardson said.
“We believe everyone should have access to the best possible care at the end of life, whoever they are, whatever their illness and wherever they are dying. The LCP has gone a long way to help achieve this. But there is still a long way to go. We urgently need to ensure that adequate palliative care training is available to all health professionals and in particular to those doctors who are unfamiliar with the LCP.
“It is also important that professionals in palliative care work together and with families and carers to build the evidence base for the LCP and its impact.”
Help the Hospices stated that along with good communication and shared goals, the LCP improves the comfort of the patient and helps to meet the needs of their family.
It said the LCP is not and never will be a substitute for good decision making on the part of professionals and it should always reflect the needs and preferences of the individual.
The Consultant Nurses in Palliative Care Reference Group said it will continue to explore further ways of supporting improved communication skills for all relevant staff and will support national efforts to train nurses and doctors in identifying the dying, communicating sensitively and relieving suffering, as well as proposed projects around integrated care pathways in end of life care.
The group called for ongoing funding for training, particularly around having difficult conversations with distressed patients and families.
‘We believe that use of the LCP guidance can be improved by bringing the voice of the family clearly and routinely into the planning, delivery and evaluation of care and we are developing ways to achieve this.’
Dignified and sensitive care
Help the Hospices highlighted the vital contribution hospices make to supporting people at the end of life and their families, stating that the care hospices provide is dignified and personal, supporting people’s emotional, physical, social and spiritual needs, both in their own home and in inpatient settings.
The Consultant Nurses in Palliative Care Reference Group said: ‘We remain committed to the belief that organised and sensitive care in the last days of life is a human right.’
The group quotes the APM, which stated: ‘We will continue to deliver and support the delivery of high quality palliative care, including listening and responding to concerns and anxieties experienced by our patients and their families about many different aspects of their illness and treatment as part of our holistic approach to their care.’
Help the Hospices and the APM both signed a consensus statement supporting the appropriate use of the Liverpool Care Pathway in September, along with 20 other organisations including the National End of Life Care Programme, Age UK, Macmillan, Marie Curie Cancer Care, the National Council for Palliative Care and the Royal College of Nursing.
Also see our recent article on the National End of Life Care Programme’s statement last week.