ABSTRACT
Care of people in their last days of life should be based on compassion, respect and, wherever possible, on research evidence. Previously the Liverpool Care Pathway attempted to facilitate this but it was withdrawn after an independent government report found that its uncritical implementation could lead to poor care. This Concise Guideline overviews NICE Clinical Guideline (NG31), which addresses: recognising dying; communication and shared decision making; maintaining hydration; and pharmacological symptom control, including anticipatory prescribing. Doctors may need to change their attitudes to care of dying people and those important to them. Specific areas where practices will need to reflect the individualised approach to care are highlighted. Limitations of the guideline are discussed. Potential barriers to implementation include need for further training and 24/7 availability of specialist support to front-line clinicians.
Introduction
In 2013, the Department of Health called for removal of the Liverpool Care Pathway, following criticism from the public, healthcare professionals and the media, and an independent review led by Baroness Neuberger,1 highlighting several concerns:
recognition that a person was dying was not always supported by an experienced clinician and not reliably reviewed, even if there was potential for improvement or stabilisation
there may have been undue sedation from injudiciously prescribed symptom control medicines
hydration and some essential medicines may have been inappropriately withheld or withdrawn, with adverse consequences
care of dying patients was not evidence-based
the Liverpool Care Pathway had been widely misinterpreted and misused as a ‘tick-box’ exercise because of inadequate staff training, supervision and implementation.
The National Institute for Health and Care Excellence (NICE) Clinical Guideline NG312 on care of the dying adult in the last days of life has been developed to provide evidence-based guidance in this area applicable to all settings (including primary care) and addressing these concerns. It is complementary to the NICE guideline on patient experience3 (including communication), and to General Medical Council guidance on treatment and care towards the end of life (including nutrition and hydration).4 Its emphasis is on individualised care and a tailored, as against a ‘one-size-fits-all’, approach.
Scope and purpose
NG31 covers the clinical care of adults judged by a multiprofessional team to be in the last few (2–3) days of life, as distinct from other NHS policies and guidance labelled ‘end-of-life care’ covering the last year or so of a chronic condition. It is intended for:
people who are dying, their families, carers and others important to them
health and social care professionals, including those in primary care, care homes, hospices, hospitals and community care settings, including people’s own homes
commissioners and providers.
It is particularly aimed at healthcare professionals in all settings who do not have specialist level training in end-of-life care, but also provides baseline standards for specialist settings, such as non-NHS palliative care units and hospices.
Its scope includes:
recognition and review of when people are entering the last few days of life, including the possibility of recovery or stabilisation
communication and shared decision making with the dying person and those important to them, to ensure individualised care
maintaining hydration and oral care, including assisted hydration
pharmacological management of pain, breathlessness, nausea and vomiting, anxiety, delirium, agitation and noisy respiratory secretions.
anticipatory prescribing.
This Concise Guideline highlights key recommendations of particular relevance to non-specialists (Box 1) from a total of 72 in NG31.
Recommendations.
Limitations of the guideline
In several areas evidence was either lacking (eg management of anxiety, delirium or agitation), of low, or very low quality (eg management of pain, nausea and vomiting), and/or methodologically flawed. Recommendations were then based on expert opinion and consensus (see original guideline for research recommendations).
An individualised approach to pharmacological management is recommended, rather than ‘blanket’ prescribing of several drugs. Clinicians should follow local prescribing guidelines where available and seek specialist palliative care advice if symptoms are not improving or there are unacceptable side effects.
The evidence for clinically assisted hydration varied from moderate to very low quality. The recommendations (including consideration of a therapeutic trial) reflect this limitation. For humane reasons, oral drinking should be encouraged and supported if it is considered safe.
The particular challenges of prognosis, symptom assessment and management, and individualised care for people with dementia, cognitive impairment or learning difficulties are acknowledged, along with the importance of the Mental Capacity Act5 in guiding care.
Implications for implementation
There are many examples of people receiving high-standard care in the last days of life by physicians and multiprofessional teams. However, recognising and discussing uncertainty and prognosis, which are essential first steps, remain challenging for many doctors and some will need extra training. The ability to support shared decision making may require change in long-standing attitudes and practices, with careful consideration of the dying person’s current mental capacity to engage and participate in discussions. Doctors should adapt practices to ensure regular shared documentation and review of goals and wishes for current and anticipated care needs, with respectful involvement of those important to the patient. Training in these aspects of effective communication skills may need extra resources.
Similar attitudinal and practice changes will be required in the assessment of hydration status and requirement. Doctors will need to work with the multiprofessional team to ensure patients’ wishes are respected (eg with continued drinking), as these may contrast with those of family members and some staff. Clinicians will need to become familiar with options for clinically assisted hydration, including subcutaneous infusions. These may require further training programmes.
Understanding and managing symptom control is a skill set often missing in general medicine, particularly among junior staff. ‘One-size-fits-all’ or ‘blanket’ prescribing proformas containing all commonly used medications for symptom control, which were intrinsic to many local ‘end-of-life care pathways’, may have contributed to the concern regarding oversedation identified in the Neuberger review.1 In spite of the lack of good-quality research evidence for prescribing in the last days of life, the guideline recommends an individualised approach, based on careful assessment of benefits and harms of each drug being added or withheld. This adaptation will require commitment by senior clinicians and trainees to careful assessment and frequent review of pharmacological symptom control. Specialist palliative care services will need to be more accessible for management of refractory symptoms or in cases where there are unacceptable side effects of medication.
Physicians may wish to review these topics as part of continuing professional development and revalidation. The following are links to training programmes and guidance.
e-Learning for Healthcare’s end of life care for all (www.e-lfh.org.uk/programmes/end-of-life-care/). General Medical Council’s guidance Treatment and care towards the end of life: good practice in decision-making.6 National Cancer Action Team’s advanced clinical communication skills course (www.connectedonlinebookings.co.uk/). National Council for Palliative Care’s guide for carers, families and friends of dying people. What to expect when someone important to you is dying7 courses and events provided by voluntary sector organisations such as Living well dying well (www.lwdwtraining.uk/courses-events/).
Measures of the experience of people important to the dying person, such as FAMCARE, may also be a useful benchmarking and monitoring tool.
There is variation across England in the use of clinically assisted hydration in the community setting. Written policies, education and training exist in some areas detailing options for certain trained staff to provide this subcutaneously or intravenously to dying people remaining at home. These could be replicated elsewhere.
Varied availability of specialist palliative care advice and 24/7 specialist bedside access remains a barrier to optimal care. This is the case for all multiprofessional team members. NICE is currently developing a service delivery guideline in this area.
Many of the recommendations in NG31 were reflected in the recently published organisational and clinical audit of the end-of-life care in hospitals, conducted by the Royal College of Physicians. The findings highlight both current variation and the challenge ahead (Box 2).8
Members of the committee
The members of the committee were Sam H Ahmedzai (chair), Adrian Blundell, Maureen Carruthers, Susan Dewar, David Edwards, Mike Grocott, Adam Firth, Annette Furley, Gwen Klepping, Diana Robinson, Joy Ross, and Cheryl Young. Co-opted members of the committee were Abdallah Al-Mohammad, Lynn Bassett, Arun Bhaskar, Julie Hendry, Julian Hughes, Ian Mursell, Sarah Nightingale, Mark Thomas, and Elizabeth Toy. The technical team at the National Clinical Guideline Centre included Kate Ashmore, Ella Barber (until February 2015), Tamara Diaz, Lindsay Dytham (until December 2015), Katharina Dworzynski (until February 2015), Elisabetta Fenu, Antonia Field-Smith, Lina Gulhane, Alexander Haines, Sarah Hodgkinson, Bethany King, Susan Latchem, Josh Ruegger, and Eleanor Samarasekera (until May 2015).
Royal College of Physicians (RCP) end-of-life care audit, 2016
Acknowledgements
The authors would like to acknowledge the support of the guideline Committee and technical team who contributed to the development of NG31, commissioned and funded by NICE.
- © 2016 Royal College of Physicians
