End of life care for infants, children and young people with life-limiting conditions: planning and management

Why this is important

When deciding the place of care and place of death, paediatric palliative care services sometimes assume that the main concern of parents and carers is that their child is able to die at home. However, the guideline committee's experience suggests that there are other significant factors for children and young people as well as their parents and carers (in particular, treatment of distressing symptoms) that may affect their choice of care setting. No research has been done to identify these factors, but it is important to recognise any reasons why a care setting might not be suitable. Understanding this would allow services to provide more personalised care, improve planning, and reduce waste and the cost of care.

Why this is important

Parents with a baby that is diagnosed antenatally with a life‑limiting condition are increasingly being offered perinatal palliative care before the birth (or very soon afterwards) if they decide to continue with the pregnancy.

Perinatal palliative care should help clinical staff (obstetric, neonatal and specialist palliative care) to deliver consistent high-quality care and ensure that families are offered meaningful and realistic choices for the care of their baby. If it is done well, perinatal palliative care also ensures that everyone involved understands the medical, social and legal frameworks for any decisions on critical care before and after birth.

There is little evidence on the experience families have of the death of a baby with or without specific support from a perinatal palliative care team. Individual case reports on family experience are very positive about perinatal palliative care, but published evidence is scarce.

Why this is important

Previous UK studies, such as The Big Study for Life-Limited Children and their Families from Together for Short Lives, have explored broad themes of psychological support needs. However, no studies have tried to understand psychological difficulties using standardised measures of psychological and relationship distress, or looked at what families want from psychological therapies.

Before research into effective interventions can be carried out, the following aspects of psychological difficulties need to be better understood:

Why this is important

Opioids (with morphine the most common first-line agent) are effective as background analgesia for children and young people who are having end of life care. However, no evidence was identified on how to provide safe and effective breakthrough analgesia (particularly in community settings). This potentially exposes children and young people who are having end of life care in the community to untreated pain or significant side effects. Studies should aim to provide evidence-based options to help manage breakthrough pain in the community. This would improve the safety and effectiveness of care for breakthrough pain, and would be likely to reduce emergency hospital admissions.

Why this is important

Healthcare professionals are often asked to estimate how close a child or young person may be to death. There is very little evidence on which to base any such estimate. To help predict when a child or young person is in the last hours or days of life, a clearer understanding is needed of which groups of signs and symptoms indicate this most clearly. This would improve healthcare planning, but importantly would also allow families to realistically address their 'hopes and wishes' for their child's care while preparing themselves for the child's or young person's last hours and days of life.