The guideline, entitled ‘Care of the dying adult‘, is to form the basis of a consultation period, as NICE seeks to gather feedback from groups with a registered interest.
The deadline for submissions is 9 September 2015, with NICE hoping to publish the final guideline in December.
Work on ‘Care of the dying adult’ began following the abolition of the Liverpool Care Pathway, an initiative designed to look after people at the end of life. The new guideline begins to provide some guidance in its place – it is hoped that it will enable doctors and nurses to identify when a patient is entering the final days of their life.
Sir Andrew Dillon, NICE chief executive, emphasised the importance of the new guidance: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved,” he said.
“The Liverpool Care Pathway was originally devised to help doctors and nurses provide quality end of life care. While it helped many to pass away with dignity, it became clear over time that it wasn’t always used in the way it was intended. Some families, for example, felt that elderly relatives were placed onto the pathway without their knowledge or consent. Following a review, the pathway is no longer used.”
He added that the new guideline was particularly important in the wake of the Parliamentary and Health Service Ombudsman’s report in May this year: “The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”
The guideline makes recommendations in six key areas, mixing practical measures to ease pain with a focus on the importance of respecting a patient’s wishes. The areas covered are:
- recognising when a person is in the last days of life
- communication
- shared decision-making
- maintaining hydration
- pharmacological interventions
- anticipatory prescribing.
At its heart, the guideline stresses that people who are dying or those important to them should be fully involved in decisions about medicines for managing symptoms at the end of life.
Dr Catherine Millington-Sanders, clinical lead for end of life at the Royal College of GPs, explains how the new NICE guideline differs from the old ‘pathway’ approach:
“The clear difference between this and the Liverpool Care Pathway is that this is not a ‘pathway’ or process to be followed. This provides guidance on what good practice looks like and gives practical advice on issues that need to be considered when caring for a person in their last days of life.”
She continued: “It suggests ways in which health and social care professionals can work together in a co-ordinated and timely way and make relevant decisions, such as how to access the appropriate medications and equipment. It also aims to support patient choice at this important time in their life, and to enable, wherever possible, patients to be cared for and to die in their preferred place, as well as supporting their families and their carers through the experience.”
Hospice UK’s director of policy and advocacy, Jonathan Ellis, outlined the role that hospices currently play in caring for people at the end of life, adding that they would be keen to share their expertise with hospitals.
“Hospices have long-standing expertise in providing high quality, tailored care which is highly responsive to the needs and preferences of dying people and their families,” he said. “The hospice sector has an important role to play in helping raise standards of end of life care in all settings and local hospices are keen to work in partnership with colleagues in hospitals, care homes and in primary care to achieve this.
“NICE is absolutely right to offer support for doctors and nurses in recognising when people are approaching the end of their lives, help them access appropriate care and communicate clearly with them and their loved ones about the options and details of their care. The right care can’t happen unless someone’s end of life care needs are fully understood.”
Claire Henry, chief executive of the National Council for Palliative Care, also welcomed the publication of the guideline, highlighting the need for ongoing training for healthcare professionals:
“People need to have meaningful choice and be involved in decisions about their end of life care, allowing them to maintain comfort and dignity until they die,” she said.
“However, it is imperative that in order to provide high standards of individualised care and support at the end of life, health and care staff are provided with ongoing training as end of life care is everybody’s business and there is only one chance to get it right.”
Professor Bill Noble, medical director at Marie Curie, echoed Ms Henry’s sentiments:
“The draft NICE guideline is an important contribution towards improving care for the dying in England,” he said. “However, to achieve genuine change, this will need to be embedded in continuous professional development and supported by more funding of much-needed research in the area. Without these commitments, we will never achieve the standards of other NHS practice.”
Read more about the guideline, including how to take part in the consultation, on the NICE website.
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