Professor Keri Thomas, national clinical lead for the Gold Standards Framework Centre in end-of-life care
The draft NICE guidance on care of the dying adult makes a valuable contribution to our knowledge base. It helps to address some of the criticisms of the Liverpool Care Pathway (LCP) in the past and the five priorities for care at present, but although rigorous and strongly evidence-based, it is still only part of the story.
If we are to meet the challenges of the ageing population, with rising death rates, comorbidities and complexity, we need to do even more – to recognise decline earlier, be more proactive and ask patients about their wishes and preferences – to avert the possibility of overmedicalised hospital deaths.
We are at a tipping point – just because we can doesn’t mean we should – and avoiding the tendency to overmedicalise dying is now one of our greatest challenges.
The guidance affirms that this foundation work is crucial to the delivery of good care in the final days, as well as a more informed understanding of the dying process and its clinical challenges.
Following the Neuberger review of the LCP and the NHS England Leadership Alliance’s work on best practice guidance (the five priorities), NICE was asked to develop a strongly evidence-based report on care for the dying.
The guideline includes a useful section on drugs, describing the pitfalls of some prescribing, such as oversedation, and a particularly relevant section on artificial hydration (a key criticism of the LCP), with guidance for appropriate individualised judgments.
In response to calls for scrutiny in care of the dying and the accusation that once on the ‘pathway’, patients could die who might otherwise recover, this document focuses on the possibility of recovery, as well as progression to dying, with alerts and recommendations for both scenarios.
It also rightly makes the distinction between care in the last days of life and the need for a broader definition of end-of-life care in the last years, months and weeks of life. It affirms that with earlier recognition of decline and better planning, there will be fewer problems in those final days.
Our experience at the Gold Standards Framework (GSF) Centre is that still too often, GPs are only identifying patients in the final days, perhaps weeks of life, and too few non-cancer or care home patients are included. Key to this is the GSF basic three steps:
- Identify patients likely to be in the final year, months, weeks or days of life
- Assess their wishes and needs
- Plan care, enabling them to live and die where they choose, and averting unwanted crises
Some GP practices, such as those with GSF accreditation, are identifying patients earlier. Many are reaching their 1% estimate of population deaths with the key ratio – the number of patients on their QOF palliative care/GSF register over the number of patients in their population – and most of these patients are being offered advance care planning.
They demonstrate what is possible to achieve and how this links up with the care of frail elderly patients and admission avoidance.
The CQC will be asking practices about this earlier identification as one of five key questions for GP practices in end-of-life care. This more proactive approach helps GPs to assess where patients are on their illness trajectory and put plans in place early, so patients live well and die where they would choose.
I welcome the clinically sound guidance and emphasis on shared decision-making, but the challenge will be ensuring consistency of practice for each patient and instilling earlier recognition, proactive care planning and reducing avoidable hospitalisation for the dying, to ensure better living and better dying for more patients in future.
Dr Trisha Macnair, speciality doctor in medicine for the elderly, Surrey Community Health
Hoping to fill the vacuum left after controversy forced the removal of the LCP, NICE’s draft guideline has made a particular effort to address in detail the aspects of the LCP that caused so much upset.
It is especially encouraging to see a much clearer focus on communication and shared decision-making, drawing the views of the person who is dying, and those important to them, much closer to the process of shaping their personal end-of-life care. This fulfils one of the original motives behind the LCP, which was developed out of a recognition that healthcare staff, burdened by the difficulties of handling death, tended to withdraw as it approached.
The framework of the LCP provided a routine that ensured regular attention to the patient, but often this became little more than a timetable for care, rather than a guarantee of good communication and the chance to share views.
Among the wealth of advice, the guideline addresses two contentious areas.
Formal recognition that a person is entering the last days of life will never be certain, but some guidance is provided to support a more reliable assessment.
However, perhaps the thorniest question of all has been withdrawal of fluids, nutrition or medicines. Most people perceive hydration and nourishment as the very basics of ensuring comfort, even in dying. In the guideline, this is discussed in depth, with clear direction.
The challenge, especially on busy NHS wards, will be for hospitals to translate this very helpful guideline into a clear and simple protocol, which not only meets the required care standards, but also allows staff the time to work through these matters with the patient and family.