NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

National Clinical Guideline Centre (UK). Care of Dying Adults in the Last Days of Life. London: National Institute for Health and Care Excellence (NICE); 2015 Dec 16. (NICE Guideline, No. 31.)

3Development of the guideline

3.1. What is a NICE clinical guideline?

NICE clinical guidelines are recommendations for the care of individuals in specific clinical conditions or circumstances within the NHS – from prevention and self-care through primary and secondary care to more specialised services. We base our clinical guidelines on the best available research evidence, with the aim of improving the quality of healthcare. We use predetermined and systematic methods to identify and evaluate the evidence relating to specific review questions.

NICE clinical guidelines can:

  • provide recommendations for the treatment and care of people by health professionals
  • be used to develop standards to assess the clinical practice of individual health professionals
  • be used in the education and training of health professionals
  • help patients to make informed decisions
  • improve communication between patients and health professionals.

While guidelines assist the practice of healthcare professionals, they do not replace their knowledge and skills.

We produce our guidelines using the following steps:

  • Guideline topic is referred to NICE from the Department of Health.
  • Stakeholders register an interest in the guideline and are consulted throughout the development process.
  • The scope is prepared by the National Clinical Guideline Centre (NCGC).
  • The NCGC establishes a Guideline Committee.
  • A draft guideline is produced after the Committee assesses the available evidence and makes recommendations.
  • There is a consultation on the draft guideline.
  • The final guideline is produced.

The NCGC and NICE produce a number of versions of this guideline:

  • the ‘full guideline’ contains all the recommendations, plus details of the methods used and the underpinning evidence
  • the ‘NICE guideline’ lists the recommendations
  • ‘information for the public’ is written using suitable language for people without specialist medical knowledge
  • NICE Pathways brings together all connected NICE guidance.

This version is the full version. The other versions can be downloaded from NICE at www.nice.org.uk.

3.2. Remit

National Health Service England (NHSE) asked NICE ‘to develop a guideline on the care of the dying adult’. NICE, in discussion with the NHSE agreed that the remit could be covered by two guidelines. The service delivery aspect of the guideline will be covered by improving supportive and palliative care (update). They commissioned the NCGC to produce the guideline.

3.3. Who developed this guideline?

A multiprofessional Guideline Committee comprising health professionals and researchers as well as lay members developed this guideline (see the list of Guideline Committee members and the acknowledgements).

The National Institute for Health and Care Excellence (NICE) funds the National Clinical Guideline Centre (NCGC) and thus supported the development of this guideline. The Committee was convened by the NCGC and chaired by Sam Ahmedzai in accordance with guidance from NICE.

The Committee met every 5 – 6 weeks during the development of the guideline. At the start of the guideline development process all Committee members declared interests including consultancies, fee-paid work, share-holdings, fellowships and support from the healthcare industry, in accordance with the NICE guidelines manual 2012.78 At all subsequent Committee meetings, members declared arising conflicts of interest.

Members were either required to withdraw completely or for part of the discussion if their declared interest made it appropriate. The details of declared interests and the actions taken are shown in Appendix B.

Staff from the NCGC provided methodological support and guidance for the development process. The team working on the guideline included a project manager, systematic reviewers, health economists and information scientists. They undertook systematic searches of the literature, appraised the evidence, conducted meta-analysis and cost-effectiveness analysis where appropriate and drafted the guideline in collaboration with the Committee.

3.3.1. What this guideline covers

The population covered by this guideline includes adults (aged 18 years and over) in whom death is expected within a few days. Key clinical issues covered include:

  • How clinicians recognise whether or not people are likely to be in their final hours or days of life; and how they recognise that the person may be improving and recovering, as well as how uncertainties regarding both situations are managed and communicated.
  • Shared decision-making with the person and carers about clinical care in the last days of life.
  • Anticipatory prescribing in the last days of life.
  • Clinical effectiveness of clinically assisted hydration.
  • Pharmacological management of pain, anxiety, breathlessness, terminal agitation, nausea, vomiting and respiratory secretions.

For further details please refer to the scope in Appendix A and the review questions in sections: 5 to 10.

3.3.2. What this guideline does not cover

Populations not covered in this guideline include infants, children and young people aged under 18 years and any young people over the age of 18 years who are cared for by paediatric services.

Clinical areas not included are:

  • Service delivery (for example out-of-hours availability of staff or how services are structured).
  • Palliative care or end of life care before the last few days or hours of life.
  • Care after death (care of the body, certification and bereavement).
  • Case notes review for recognition of dying.
  • The usefulness of laboratory and other biological evidence.
  • Multi-professional team structure.
  • Clinically assisted nutrition.

3.3.3. Relationships between the guideline and other NICE guidance

Published guidance: general

Published guidance: other

Copyright © 2015 National Clinical Guideline Centre.
Bookshelf ID: NBK356015
Contents