The future for end-of-life care?

by
18 October 2013

Use of the Liverpool Care Pathway is to be phased out within the next year. Lee Rayfield and Brendan McCarthy consider how it will be replaced

SHUTTERSTOCK

Life support: the review said there was a need for independent advocates to represent patients, carers and families

Life support: the review said there was a need for independent advocates to represent patients, carers and families

IN HIS article in this paper earlier this year, the Bishop of Carlisle, the Rt Revd James Newcome, expressed disappointment at the Government's decision to abolish the Liverpool Care Pathway (LCP) (Comment, 19 July).

Bishop Newcome was not the only one mourning the death of the LCP. Professor Keri Thomas, a committed Christian and National Clinical Lead for the Gold Standards Framework (GSF) for End of Life Care, was also sorry to see its demise. Nevertheless, she recognises that the evidence submitted to the independent review of the LCP had effectively made it untenable to continue as it was.

So what now for end-of-life care? And where will the spiritual dimensions be recognised and protected?

The independent review has made its recommendations, and in his reply to the question in the Lords from the Bishop of Bristol, the Rt Revd Michael Hill, Earl Howe stated that the LCP would be "phased out over the next six to 12 months, in favour of an individual approach to end-of-life care for each patient, with a personalised care plan backed up by condition-specific guidance, and a named senior clinician responsible for its implementation."

It is the implementation of the LCP that has been its most serious failing. The pathway was experienced by many as the withdrawal of care rather than its provision. Although the LCP was successfully spread across the UK, in a few years its potential was heavily diluted by a combination of the rapidity of its dissemination, reduced funding, and a lack of accreditation or quality assurance to ensure that it was being well delivered.

 

ONE of us remembers the impact on his family of seeing "Do not resuscitate" written at the end of his father's bed. This lack of communication was well before the LCP, and was partly what the pathway had been developed to reverse; sadly, though, its approach to the dissemination of this message was lost or misconstrued.

The LCP should have enabled patients and their families to be informed, to be at peace, and to be where they would like to be at their death - and it ought to be acknowledged that thousands have been helped in this respect.

As the Government endeavours to put flesh on its revised aspirations for personalised care-plans, they would do well to draw on the more proactive elements expected in the GSF "gold standards": early identification of patients' drawing towards the end of their life (years or months, not weeks or days); clarifying particular needs, and assessing condition-specific clinical ones; and ensuring that the personal wishes of patients are engaged with fully, through advance-care planning. These will help patients to have choice, and a measure of control in respect of their care.

So where, explicitly, does "spiritual care" come in the recommendations? A second question from Bishop Hill, which drew attention to NICE end-of-life care quality standards, was addressed by Earl Howe. This signalled the importance and necessity of support's being holistic and encompassing spiritual and religious dimensions.

Earl Howe's reply gave assurance that the Government regarded "spiritual and religious support as an essential part of first-class end-of-life care"; but, he said, he could not set out any specifics at this point.

It is critical that the value of chaplaincy support is properly recognised by the Department of Health, as it puts flesh on the bones of that commitment. The independent review spoke of a need for independent advocates to represent patients, carers, and families; this is a part that chaplains occupy naturally, and would be deemed a "specialist service" by NICE.

 

THE commitment of the Government to supporting the delivery of holistic, patient-centred services in the NHS has been made clear, and health-care chaplaincy for staff and patients is an important part of the Government's "end-of-life strategy".

As the executive director of the London Institute for Contemporary Christianity, Mark Greene, says, however, "culture eats strategy for breakfast." End-of life-care is now a hot topic in the NHS, and is at last being widely discussed. Whatever follows on from the LCP must create an ethos, as well as structures, that will shape a culture which enables everyone to live well and die well.

Given the ever increasing pressures on health care, and the persistent sniping by secularists at chaplaincy, ensuring that this happens is going to be a challenge. We must engage on the pitch, and not just shout from the stands.

Ways in which we can do this are by getting involved in the road shows due towards the end of the year across the country; by becoming a lay member of the board of a health-care provider; by supporting the part played by chaplains in our local areas; and by becoming familiar with the Neuberger report and its recommendations.

The independent review put a renewed and welcome emphasis on compassion and the needs of the individual in first-class end-of-life care. The review clearly differentiated between helping people to die well, and assisted dying; it reiterated the secular and religious consensus that attempts to shorten a person's life are morally wrong, as well as illegal, and have no place in what should succeed the LCP.

A piece written by one us for The Guardian in 2010 concluded: "If you want to help build a society which majors on compassion and care, which changes the experience of those who are dying, or fearful of growing infirm and a burden, there are far better roads for us to travel [than Assisted Dying]." LCP may not have been the right pathway, but it has shown us what is possible.

Dr Lee Rayfield is Bishop of Swindon and a scientist. He is an adviser to the Mission and Public Affairs Council.

The Revd Dr Brendan McCarthy advises the Archbishops' Council on policy for medical ethics and health and social care through the Mission and Public Affairs Council.

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