As GPs we can expect that approximately 1% of our patients will die each year. In my 5,000 patient practice we have 3.5 whole time equivalent GPs. This means I will be involved in providing care to an average of eight patients per month who may be in the last days of life.
My initial exposure to the discipline of palliative medicine came during a hospice placement as an undergraduate student. I was introduced to some of the hallmarks of high quality end of life care and recognised the benefits of clear and open communication with dying people and those important to them.
The Liverpool Care Pathway (LCP) was widely adopted as a tool which could facilitate this approach, however the Neuberger review highlighted significant failings with its implementation. To address this, NICE were tasked with developing evidence-based clinical guidelines for care of the dying adult.
The robust evidence summaries given to the Guideline Development Group by the technical team meant we could assess all of the available evidence, and seek expert opinion to help refine our recommendations. An unprecedented 700 pages of stakeholder feedback also fed into this work and through the NICE process I believe we have produced a guideline which will help us as GPs meet the needs of our dying patients and their families, friends and carers.
Recommendations with particular relevance to GPs include a subtle yet important shift from ‘diagnosing dying’ to recognising and sharing the uncertainty in prognostication. A list of common signs and symptoms are provided which will help sensitise health and social care professionals to the possibility that an individual is entering the last days of life.
The identification of a named lead professional is also recommended. This person, who may or may not be a GP, will take responsibility for facilitating shared decision making and also make sure that dying people and their carers’ are aware of the support available. Discussions and decisions which do take place should be recorded as an individualised care plan in the care record and adhering to the GMC's guidance on confidentiality shared with the patient, those important to them and the wider multi-disciplinary team.
This recommendation is clearly an extension of current practice and links with the wider body of work ongoing relating to the delivery of proactive care. The use of EPaCCS (electronic palliative care co-ordinating systems) could aid the dissemination of relevant information within the multidisciplinary team.
A potentially significant change in practice for some GPs will relate to the recommendations made regarding maintaining hydration. The guideline supports dying people being provided with hydration support. For people unable to maintain adequate oral hydration alone consideration should be given to use of clinically assisted hydration.
Those with distressing symptoms should be given a trial of clinically assisted hydration given the equipoise that exists in the research evidence. Specifically we found that it remains uncertain whether giving clinically assisted hydration in the last days of life will prolong life or extend the dying process or whether not giving clinically assisted hydration to people in the last days of life will hasten death.
The pharmacological management sections of the guideline further reinforce the need for a patient-centred approach. Recommendations include reviewing current medications, the management of common symptoms in the last days of life and an individualised approach to anticipatory prescribing.
An implementation tool to specifically support the pharmacological interventions has also been proposed and members of the guideline development team are currently working with the NICE medicines prescribing team to produce a practical prescribing resource.
Dr Adam Firth is a GP and an independent member of the committee that developed NICE's guideline