What is paediatric palliative care?

A comprehensive overview

Paediatric 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.

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.

The IAHPC Consensus-Based Definition of Palliative Care (2019)

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.

Palliative care:

• Includes, prevention, early identification, comprehensive assessment and management of physical issues, including pain and other distressing symptoms, psychological distress, spiritual distress and social needs. Whenever possible, these interventions must be evidence based.
• Provides support to help patients live as fully as possible until death by facilitating effective communication, helping them and their families determine goals of care.
• Is applicable throughout the course of an illness, according to the patient’s needs.
• Is provided in conjunction with disease modifying therapies whenever needed.
• May positively influence the course of illness.
• Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.
• Provides support to the family and the caregivers during the patient’s illness, and in their own bereavement.
• Is delivered recognizing and respecting the cultural values and beliefs of the patient and the family.
• Is applicable throughout all health care settings (place of residence and institutions) and in all levels (primary to tertiary).
• Can be provided by professionals with basic palliative care training.
• Requires specialist palliative care with a multiprofessional team for referral of complex cases.

Read this definition here.

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.

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