The death of 83-year-old Jean Tulloch is to be officially investigated after her son’s claims that doctors attempted to speed up the end of her life by withdrawing food and fluids. Once again we see more bad publicity for the Liverpool Care Pathway (LCP), which has caused much debate and controversy in the press.
The LCP - or supportive care pathway for the dying - came out of a strategy for providing end of life care by the Department of Health in 2010. This strategy led to the development of several initiatives aimed at improving the quality of care for people at the end of life and better training for those doctors and nurses involved in providing that care.
End of life care is an emotive issue and there have even been accusations that the LCP is being used to hasten death for patients spending their last days in hospital because of financial pressures on the NHS.
But the pathway has been adopted by hospital trusts as part of the wider strategy that aims to improve end of life care for adults in the UK. Evaluations of the LCP have shown that when the pathway is correctly implemented it can provide a consistent and comprehensive model that helps engage all healthcare professionals in the care of patient, improve communication and record keeping, and overall enable a dignified and comfortable death. This has been supported by numerous care organisations.
Headlines win through
The LCP promotes comfort for patients near the very end of life but the media reports that relatives are not always informed that their loved ones have been put on a “pathway to die”. Provision in the LCP to withdraw of food and fluids if that makes things more comfortable has result in criticism for its supposed remarkable ability to hasten death - even being termed the “death pathway” by the Daily Mail.
Having spent my academic career exploring end of life care in critical and acute care environments, it concerns me greatly that these recent conversations lack knowledge and are fuelled by emotional attributions of blame.
One only needs to walk onto an acute medical ward to see how our obsession with prolonging life has initiated numerous painful challenges. In this scenario, the prospect of immortality might only appeal to a minority, if anyone at all.
People are not necessarily living longer but instead are dying for a longer period of time with an increasing number of other health issues. Surely, our efforts would be better spent attempting to improve the quality of end of life experiences rather than preventing the inevitability of death?
Having used the pathway in my clinical role as a nurse and researched its implementation in several settings, I understand initiatives like this are by no means a model to prolong or hasten the end of life but a tool to support the delivery of care. And as with any tool, it is only as good as the person operating it.
We need to improve care
What we do need is better educational input, inter-disciplinary support from all areas of the health system and above all good open communication.
Current research across the Midlands conducted by Collaborations for Leadership in Applied Health Research and Care (CLAHRC) at the University of Birmingham is exploring the way in which the pathway is implemented and the impact of the pathway on providing a dignified death – this is imperative on a national scale and to build and direct future evidence-based planning.
More than anything, the LCP debate raises an issue over the lack of communication about end of life care planning. One good outcome of the media attention around the end of life is that we are now talking about the inevitable. Undoubtedly, the LCP has been misinterpreted - one of its main benefits is providing an opportunity for families to discuss dying and to plan for it.
We can learn from the issues raised and a current wide-ranging review of the LCP in England is welcome if it improves the system and inspired more confidence and transparency.
But from my experience as an emergency nurse, it’s not just the system. Problems can and do also arise when relatives are unsure about the wishes of their loved one as death nears. It is not a subject many of us feel happy discussing with people that are close to us.
But it’s a conversation worth having. And then, perhaps, our efforts might also be better used to help people to die with dignity and in comfort rather than fighting the inevitability of death.