Together for Short Lives

Together For Short Lives – Caring for a child at end of life

Together For Short Lives have updated their ‘caring for a child at end of life guide. It was first published in 2012 and last updated in October 2019. This guide has been written to help support professionals who care for children and young people before death, at the time of death and after death.

Section 1.9 is dedicated to Digital Legacy and the importance that many children and young people place on their digital assets and their digital legacy.

The guide is split into the following seven sections:

  1. Care before death
  2. Care at the time of death
  3. Care after death
  4. Bereavement support
  5. Staff support and supervision
  6. Glossary and references
  7. Practice Prompts

Caring for a child before death can be challenging, involving complex decision-making and symptom management. Recognising that end of life is approaching enables families and professionals to focus on and plan together for the death of the child. Multi-agency care planning is fundamental to the care of the child at this stage and it is vital to have good communication and partnership between services. It is important to ensure that an Advance Care Plan (ACP) or end of life plan has addressed the family’s priorities of care, preferred location of care, decisions about resuscitation and organ or tissue donation, and that a symptom management plan for end of life is in place. – Together For Short Lives.

Together for Short Lives caring for a child at end of life

This Together For Short Lives guide is a practical toolkit addressing a number of difficult issues. It provides practical steps signposts to further resources when it is relevant to do so. The guide can be downloaded for free from:

To learn more about Together For Lives visit

Share on facebook
Share on google
Share on twitter
Share on linkedin
Scroll to Top