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End of life care for infants, children and young people with life-limiting conditions: planning and management: the NICE guideline 2016
  1. Ella Aidoo,
  2. Dilini Rajapakse
  1. Palliative Medicine, Louis Dundas Centre for Children’s Palliative Care, Great Ormond Street Hospital NHS Foundation Trust, London, UK
  1. Correspondence to Dr Ella Aidoo, Louis Dundas Centre for Children’s Palliative Care, Hospital Foundation Trust, London, WC1N 3JH, UK; ella.aidoo{at}doctors.org.uk

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Background

The National Institute for Health and Care Excellence (NICE) guideline ‘End of life Care for Infants, Children and Young people with Life-limiting Conditions: Planning and Management’ was published in December 2016. Today, there are 49 000 infants, children and young people (0–18 years) living with life-limiting conditions in the UK.1 The recommendations aim to support a wide variety of professionals, and infants, children and young people with life-limiting conditions and their families, with issues regarding end-of-life and palliative care. Guidance on basic symptom management, communication, advance care planning and service delivery is included.

This is the first UK published guideline on this subject, but there have been several published frameworks,2 care pathways,3 4 drug formularies5 and symptom management guidelines6 7 in this area of practice (box 1). This guideline therefore adds to existing published recommendations, including a charter produced by Together for Short Lives in 2012.8

Box 1

Resources

  • Link to full National Institute for Health and Care Excellence guideline: https://www.nice.org.uk/guidance/ng61.

  • Link to Association of Paediatric Palliative Medicine Master Formulary: http://www.appm.org.uk/10.html.

  • Link to basic symptom control guide: http://www.togetherforshortlives.org.uk/professionals/resources/2434_basic_symptom_control_in_paediatric_palliative_care_free_download.

Key issues

The guideline highlights the importance of a holistic approach to the care of infants, children and young people with life-limiting illnesses. It recognises that care delivery to the infant, child and wider family needs to be consistent, responsive and seamless throughout childhood, despite unpredictable and variable disease trajectories. This needs to involve coordinated interdisciplinary team-working by health, education and social care providers from the public sector and non-statutory organisations, in geographically distinct care settings. The following are the key issues highlighted:

1. Communication

Children and young people have a central role in decision-making, and their thoughts and opinions need to be sensitively identified, accommodated and contextualised according to their level of understanding, sociocultural background, family beliefs and special needs. …

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