What is children’s palliative care?

Palliative care for children is holistic care delivered by a multidisciplinary team of people with the appropriate training. It provides tailored support to address the physical, spiritual, emotional and social needs of a child with a life-threatening or life-limiting condition and extends this care to the child’s family. It can begin at the time of diagnosis or at any point along the progression of the illness even when curative treatments are appropriate. Palliative care for children continues throughout the remainder of the child’s life, accompanies and supports the child and the family at the end of life and continues this support into the bereavement period, for as long as it is needed. The focus of care is on improving and enhancing quality of life, ensuring dignity in death and providing support in bereavement.

Definitions

The World Health Organization defines children’s palliative care as follows:

Palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the whole family. It includes the management of distressing symptoms, provision of short breaks, care at the end of life and bereavement support.

Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement.

Palliative care

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
The UK charity, Together for Short Lives, provides the following definition:

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.

Read their definition here.

Principles of children’s palliative care

Palliative care for children is a distinct and different speciality involving those experienced in children’s services.  The following unique issues must be taken into account when planning palliative care services for children:

  • There is a broad spectrum of childhood conditions that are likely to shorten a child’s life, many of which are rare.
  • Some of these illnesses may run in families resulting in there being more than one affected child in the family so genetic counselling may be indicated.
  • The timespan of children’s illness is often different from adults and may extend over many years.
  • Children continue to develop physically, emotionally and cognitively, this affects both their medical and social needs and their understanding of disease and death.
  • The care of children with life limiting conditions should be holistic and multi-disciplinary.  This requires a range of services and the skills of those trained and experienced in the care of children.
  • In all settings children should be cared for in a child-centred environment.
  • Families should be acknowledged as the prime carers and the child’s home as the centre of caring.
  • Services should be coordinated to provide flexible, comprehensive support for the whole family, including siblings.
  • Provision of education to sick children is essential and a legal entitlement.  This adds to the complexity of care provision.
  • Staff in all settings should have training and experience in the care of children with palliative care needs.

What does children’s palliative care offer the child and family?

Palliative care programmes can provide an amazingly wide range of services. These include the following:

  • Pain management, including the treatment of visceral and neuropathic pain
  • Symptom management for unpleasant symptoms, including nausea, vomiting, constipation, anxiety, sleep problems, and respiratory problems
  • Assistance with making medical decisions, including developing advance directives and/or do not resuscitate orders
  • Medical care at home, which may include nursing visits and actual care to keep children out of hospital.
  • Complex care management and assistance navigating the medical system
  • Care coordination among specialists
  • Activities to improve quality of life, such as massage, art therapy, and music therapy
  • Services to assist the child (and siblings) emotionally and behaviorally
  • Emotional support for siblings and family members
  • Spiritual support
  • Social worker services, to assist in identifying resources and programmes

If you have any comments or questions that you would like one of our experts from the network to respond to, please send an email to info@patchsa.org