Palliative care for children represents a special, albeit closely related field to adult palliative care.
The World Health Organization’s (WHO) 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.
ICPCN has a set of working definitions to help clarify our work with children’s palliative care. These have been developed in the UK and are currently under discussion. We hope that they will eventually gain currency with our members across the world and help to prioritise children’s palliative care services. Please note that as these definitions have been largely developed in the UK some of the terms and wording may be specific to the UK children’s palliative care network.
“Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.” ACT/RCPCH, UK 2003.
The aim of palliative care is to achieve quality of life and a dignified death, preferably in a place of the child and family’s choosing. All children with palliative care needs require an individual package of care including variable components of both generic and specialist palliative care provided in a planned, coordinated, timely and flexible manner as directed by need.
ICPCN also recognises the World Health Organization’s definition of children’s palliative care: children’s palliative care is an approach to care which can follow four distinct patterns as defined by ACT*.
Life-threatening and life-limiting conditions can be classified into four groups:
Life-threatening conditions for which curative treatment may be feasible but can fail. Where access to palliative care services may be necessary when treatment fails. Children in long term remission or following successful curative treatment are not included.
(Examples: cancer, irreversible organ failures of heart, liver, and kidney.)
Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
(Example: cystic fibrosis.)
Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.
(Examples: Batten disease, mucopolysaccharidoses, muscular dystrophy.)
Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.
(Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury.)
Working definitions of children’s palliative care
Children’s palliative care: Children’s palliative care is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the whole family and includes the management of distressing symptoms, provision of respite and care from diagnosis through death and bereavement.
Symptom management: Symptom management is the control of the physical aspects of symptoms combined with attention to the psychosocial and spiritual aspects of symptoms.
Respite care: Respite care is care where the main function is to relieve the family of the burden of care by providing support in the home or an alternative community environment such as a children’s hospice. It provides the child or young person an opportunity to enjoy social interaction and leisure facilities. It also provides opportunities for siblings to have fun and receive support in their own right. Respite care may offer the whole family an opportunity to be together and to be supported in the care of their child or it may offer care solely for the child or young person.
Specialist Respite Care: Specialist respite care refers to a setting of care, a programme of care or a service that provides additional services. It may take place in the child’s home or in a setting outside of the home such as a hospital, long-term care facility or hospice. Specialist respite care provides the support required to meet the child’s holistic care needs and enables children and families to access short breaks. Specialist respite care will often incidentally address some aspects of symptom management.
Hospice: This term is often used interchangeably to describe a philosophy, a programme of care or a site of care. The term is commonly used to refer to an organisation or programme of care that provides, arranges, coordinates and advises on a wide range of clinical and supportive services for dying patients and those close to them.
Children’s Hospice: A children’s hospice is an organisation which provides palliative care for a child or young person with a life-limiting condition and their family. It aims to meet all needs – physical, emotional, social and spiritual through a range of services including children’s palliative care, specialist respite care, terminal and emergency care, 24-hour telephone support, practical help, advice and information and bereavement support for all family members.
Hospice at Home: Hospice at Home is an integral component of children’s palliative care. Hospice at Home is a term commonly used to describe a service which brings skilled, practical children’s palliative care into the home environment. Hospice at Home works in partnership with parents and families and provides hands-on expert nursing care, on up to a 24-hour basis, along with other elements of palliative care including:
- Emotional, psychological and social support, counselling, and spiritual care.
- Access to specialist colleagues in other disciplines, such as physiotherapy, as required.
- Provision of information, support, education and training where needed to all carers both lay and professional.
- Close collaboration and communication with the primary care team, the child’s acute hospital specialists if appropriate, and other agencies.
- Specialist respite care.
- 24hr end of life care and
- Bereavement support.
End of life: The ‘end of life’ phase ends in death. The definition of its beginning is variable according to the individual child/young person and professional perspectives. In some cases it may be the child/young person or family who first recognises its beginning. In other cases the principal factor may be the judgement of the health/social care professional/team responsible for the care of the patient.
End of life care: End of life care is care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It focuses on preparing for an anticipated death and managing the end stage of a terminal medical condition, this includes care during and around the time of death – and immediately afterwards. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.
End of life care services: End of life care services are services to support those with advanced, progressive, incurable illness to live as well as possible until they die. These are services that enable the supportive and end of life care needs of both the child/young person and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. This is not confined to discrete specialist services but includes those services provided as an integral part of the practice of any health or social care professional in any setting.
Supportive care: Supportive care is an ‘umbrella’ term for all services, both generalist and specialist, that may be required to support people with life-threatening illness. It is not a response to a particular disease or its stage, but is based on an assumption that people have needs for supportive care from the time that the possibility of a life-threatening condition is raised.
Care of the dying: Care of the dying is the care of the patient and family in the last hours and days of life. It incorporates four key domains of care, physical, psychological, social and spiritual and supports the family at that time and into bereavement.
Complex care/continuing care: Continuing care is a bespoke package of care beyond what is available through core and universal health services. It is provided to children with high levels of complexity or intensity of nursing care needs.
Life-limiting Conditions: Life-limiting conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on parents and carers.
Life threatening Conditions: Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as children with cancer. Children in long-term remission or following successful curative treatment are not included.
Family includes informal carers and all those who matter to the patient.
Differences between Children and Adult Palliative Care
Although it is acknowledged there are similarities in the principles of palliative care for adults and children, it is crucial to emphasise underlying differences. The unique concerns which should be taken into account in the planning of palliative care services demonstrates the need to develop children’s issues separately.
- Causes of death in children are different from those in adults, making palliative care guidelines inappropriate for children. These deficiencies can be explained in part by a lack of standards for paediatric palliative care. Standards for paediatric palliative care are now becoming a worldwide priority.
- A variety of childhood conditions are rare, and length of illness can vary greatly from days to years. The child may survive into early adulthood, extending palliative care over many years. Children with life-limiting conditions require holistic and multidisciplinary services for long periods of time.
- Children continue to develop physically, emotionally and cognitively, which means their medical and social needs as well as understanding of disease and death is complex. Providing education to sick children is critical and a legal entitlement.
- Palliative care affects the whole family, with the burden of care falling upon parents and siblings or grandparents. Appropriate services are more likely to be home based rather than hospital-based. In addition, more than one child may be affected in the family, and genetic counselling may be necessary.
- Children’s palliative care services are not organised in the same way as palliative care services for adults. Paediatricians tend to remain involved in the care of their patients through their lives and work alongside palliative care services.
- It is shown that children receive more aggressive care compared to adults at the end of life, and may require specific symptom and pain management throughout the course of treatment.
*ACT has since joined with Children’s Hospices UK to form the organisation Together for Short Lives.