Scope of paediatric palliative care
Compared with adults, paediatric palliative care patients are fewer in number. They also have a wider and more diverse range of conditions, some of which may be rare, and some of which may have a clinical course which runs over many years.
In developed nations the estimated number of children and young people likely to require palliative care services is 16 per 10,000 for the population aged between 0-19 years (including neonatal deaths). This figure is 15 per 10,00 excluding neonatal deaths. [1]
Approximately 40% of children will suffer from a malignancy. [2] The Australian Bureau of Statistics estimates there will be approximately 5.5 million children and young persons aged between 0 and 19 years living in Australia by 30 June 2007. This data suggests that approximately 8,822 families would potentially benefit from paediatric palliative care services per annum.
Definition of paediatric palliative care
Although end-of-life care forms part of paediatric palliative care, elements of palliative care may be needed from diagnosis. The World Health Organization (WHO) definition of paediatric palliative care, summarised below, is widely accepted worldwide. It is currently under consideration for use in Australia by the Australian and New Zealand Paediatric Palliative Care Reference Group.
Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care, appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders (WHO 1998a):
- Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family
- It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease
- Health providers must evaluate and alleviate a child's physical, psychological, and social distress
- Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited
- It can be provided in tertiary care facilities, in community health centres and even in children's homes.
These children and young persons represent a diverse population from four broad diagnostic groups:
- Children with life threatening conditions during periods of prognostic uncertainty or when treatment fails eg, cancer, irreversible organ failure
- Conditions that are ultimately life limiting but long-term palliation may be possible e.g. cystic fibrosis, Duchenne Muscular Dystrophy, HIV/AIDS
- Progressive conditions with no curative options e.g. metabolic conditions such as mucopolysaccaridoses, neurodegenerative disorders
- Stable neurological conditions that may have life threatening complications e.g. severe cerebral palsy. [3]
Advances in medical care means these patients are now living longer and have increasingly complex care needs.
Issues specific to children and young persons
- There is tremendous variation in the state of readiness for transition to palliative care
- Healthcare professionals with expertise in paediatric palliative care work in conjunction with the primary team; they may take the lead in symptom management but children remain under the care of their primary care providers
- Developmental factors influence all aspects of a child’s care including his / her understanding of illness and death, ability to communicate and participate in decision-making, pharmacodynamics and pharmacokinetics of drugs
- Access to key components of the palliative care model (see care planning and provision) is often required before a child or young person has access to specialist palliative care providers
- Many of the needs of children and young persons with a life-limiting illness and their families are unique and require special consideration
- Siblings require specific educational and psychosocial support throughout the illness trajectory that is developmentally appropriate
- The impact of a child’s progressive, life-limiting illness has a profound effect on all dimensions of family life, including family structure and organisation which become permanently altered
- The death of a child is considered to be the most traumatic experience a family can suffer. Grief associated with the loss of a child is acknowledged as particularly intense with a high risk of complicated bereavement
- Most children with a life-limiting illness are cared for at home throughout the course of their illness where possible.
Provision of care
- The aim of care is to enhance quality of life for the child and family
- Provision of key elements of palliative care should be considered when a child is first diagnosed with a life-limiting illness, regardless of whether the outcome is cure
- The components of the palliative care model (ie, supportive care that seeks to provide symptom control due to disease or treatment) can be given alongside active treatment aimed at cure or prolonging good quality of life
- Although most families will opt for palliative care to be provided in the home, a flexible approach to care delivery should be adopted (eg, home, hospital, respite or hospice)
- Access to regular respite is a cornerstone of care for many families.
Care planning and provision
- Care should be family focused and involve the child and any family member or significant person who provides physical, psychological, spiritual and social support
- Practical and educational resources must be provided to families to facilitate care in the home and at school. Practical resources include aids and equipment, and appropriate nutrition and pain management strategies. Educational resources should be appropriate to age, cognitive and educational ability and culturally appropriate
- Care should be individualised according to child and family needs, coordinated by a key health professional and involve a multidisciplinary team
- A paediatrician with expertise in the child’s condition should be involved in the care process
- Continuity of care from the child’s primary care team is essential and should include planning and sharing of care strategies with all care providers whether in the home, hospital, respite centre or hospice if available
- Children and families should be fully informed of treatment options and changes in their child’s condition, and involved in care planning and decision making
- Care should be linked to local community resources and agencies
- Ideally, families require access to expert advice and care 24 hours a day, regardless of the place of care.
- Families require financial support.
Symptom management
- Every child must have their symptoms assessed frequently and an appropriate care plan developed to ensure appropriate treatment and level of comfort
- Physical, psychological, social and spiritual symptoms must be addressed.
Education and training
- Health professionals and volunteers should receive palliative care training and have access to support where possible.
Psychosocial support
- Should commence at diagnosis and continue through the child’s illness, death and bereavement
- Should be available to family, carers and others affected by the child’s illness and death
- Sibling support is an essential component of paediatric palliative care.
State paediatric palliative care services
Resources
Web Resources
Association for Children’s Palliative Care
Association of Children’s Hospices
Children’s Hospice International
Initiative for Paediatric Palliative Care
National Association for Loss and Grief
PaedPal Literature Search
Pediatric Hospice Care. Guiding Principles and Norms of Practice.
SIDS and Kids
Therapeutic Guidelines
References
- Cochrane H, Liyanage S, Nantambi R Palliative Care Statistics for Children and Young Adults Department of Health May 2007.
- The Association for Children with Life-threatening or Terminal Conditions (ACT) and their Families and the Royal College of Paediatrics and Child Health (2003). A Guide to the Development of Children’s Palliative Care Services (2nd Edition) Bristol, ACT.
- Goldman A ABC of palliative care: Special problem of children BMJ 1998;316:49-52
This page was created on 14 May 2008 and is due for review in May 2010