HANDLE WITH CARE: ADVANCE CARE PLANNING FOR CHILDREN AND YOUNG PEOPLE WITH PALLIATIVE CARE NEEDS

Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for paediatricians, families and their multidisciplinary teams to consider, reflect and record the outcome of their conversations about what might happen in the future in order to optimise quality of clinical care and inform decision-making. For some children and young people this will include discussions about the possibility of death in childhood. This may be unexpected and sudden, in the context of an otherwise active management plan or may be expected and necessitate discussions about the process of dying and attention to symptoms. Decision-making about appropriate levels of intervention must take place within a legal and ethical framework, recognising that the UK Equality Act (2010) protects the rights of disabled children and young people and infants and children of all ages to the same high quality healthcare as anyone else.

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Advance Care Planning in palliative care: A qualitative investigation into the perspective of Paediatric Intensive Care Unit staff

Palliative Medicine ◽

10.1177/0269216315573000 ◽

2015 ◽

Vol 29 (4) ◽

pp. 371-379 ◽

Cited By ~ 18

Author(s):

Sarah Mitchell ◽

Jeremy Dale

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Young People ◽

End Of Life ◽

Advance Care Planning ◽

Paediatric Intensive Care Unit ◽

Paediatric Intensive Care ◽

Care Planning ◽

Children And Young People ◽

Advance Care

Background: The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. Aim: To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Design: Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. Setting/participants: UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Findings: Four main themes emerged: recognition of an illness as ‘life-limiting’; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Conclusions: Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life.

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