The development of the guidance follows the phase-out during 2014 of the Liverpool Care Pathway ('the LCP') following high profile allegations that patients had been placed on the LCP without their consent or without the knowledge of the individuals or their families. The LCP was heavily criticised in 2013 by the Independent Review of the LCP ('More Care, Less Pathway'), which recognised that there was a 'familiar pattern' of poor practice resulting in patients dying on the LCP being treated with less than the respect they deserve.
The 'Care of the Dying Adult' guidance is focussed on the care needed when a person is judged to be within a few days of death as distinct from 'end of life care' which can refer to care within the last year or so of life. It seeks to deal with three main areas of concern: recognition of when a person is dying, sedation of a dying person as a result of injudiciously prescribed medication and withholding of hydration or medication. It will be of particular interest to commissioners and providers of such care as well as health care professionals, patients and carers.
A key part of the guidance is concerned with the importance of gathering information to make an informed assessment as to whether a person may be entering the last days of life including assessing signs and symptoms, and then using information from a multi-professional team to help determine whether the person is nearing death or recovering. The guidance that several professionals should be involved in the assessment appears to be an attempt to allay concerns that individual medical practitioners were able to take critical decisions on a dying person's care and prognosis. The guidance that practitioners should consider signs of recovery may also address concerns associated with the now-redundant terminology of a 'pathway', which may have suggested to some patients or families that provision of such care would inevitably lead to imminent death.
Those alarmed by the conclusion of the 2013 Independent Review that the 'greatest concern' with the LCP was around the withholding or prohibition of oral fluids from dying adults may be relieved that the guidance addresses maintaining hydration. It notes that the dying person must be supported to drink if they wish to and are able to, and that health professionals should review the possible need for assisted hydration.
The guidance also focusses on communication and shared decision-making, anticipatory prescribing, pain management, addressing anxiety and delirium and dealing with noisy respiratory secretions. The paper also makes recommendations for research; for example research into how drugs used in UK palliative care practice can be applied to reduce delirium and agitation without causing undue sedation and inadvertently shortening life.
Since the guideline does not make recommendations about how services should be configured to deliver care, this will no doubt be a critical talking point for those commissioning services. A parallel guideline is being developed by NICE to cover the end of life care for infants, children and young people.
The 2013 Independent Review of the LCP concluded that acute hospitals needed to treat patients, relatives and carers with more respect. The key issue for those participating in this consultation may be whether the guidance can lay the foundations for an individualised care plan approach to give dignity to dying adults.