• 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 centers, and even in children’s homes.

Where palliative care is provided depends on the resources available, the needs of the child and their family, and the ability of the service to provide care in various settings. Where possible children receive care at home. However, palliative care can be offered at home, at school, in the community, at a clinic, a hospital (out-patient, day-care, in-patient), and where available, in a children’s hospice. As palliative care is a philosophy of care it can be provided wherever we find the child and their family.

Paediatric palliative care can be provided in a range of settings – a children’s hospice is just one place where palliative care can be provided. A children’s hospice is a specialist organisation that provides palliative care for a child or young person with a life-limiting condition and their family. It aims to meet the needs of children and their families through a range of services which can include respite care, end-of-life care, emergency care, 24- hours telephone support, practical help, advice, home care, inpatient care, day care and information and bereavement support for all family members. Hospices are often non-governmental organisations (NGOs) or charities, and they may provide all or some of the services identified here. They work closely with local hospitals, community teams etc to ensure the ongoing provision of palliative care to all children and young people who need it. The availability of children’s hospices varies from country to country.

Often the term ‘palliative care’ and hospice’ care are used interchangeably, however a hospice is one way of delivering palliative care. In the USA and other countries that follow the US system, there is a distinct difference between the two terms with ‘palliative care’ being holistic care provided to any person with a severe, complex, life-limiting condition and ‘hospice care’ being defines as care that is provided to those nearing the end-of-life (life expectancy <6 months) and this is related to their health financing systems.

Life-threatening conditions are those where there is a possibility of a cure or remission, failure of which will lead to death. Cancer is an example of a life-threatening condition.

Life-limiting conditions (sometimes referred to as life-shortening) are those for which there is no cure and death is inevitable, either in childhood or early adulthood. Some life-limiting illnesses progress quickly, and others such as Duchenne muscular dystrophy, may cause a slow deterioration over many years.

Other terms that are often used within paediatricpalliative care include life-shortening, complex conditions, and children experiencing Serious health-related suffering’ (SHS). SHS was defined in the Lancet Commission report as “Suffering is health-related when it is associated with illness or injury of any kind. Suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social, or emotional functioning. Palliative care should be focused on relieving the SHS that is associated with life-limiting or life-threatening health conditions or the end of life.”

Due to the holistic nature of paediatric palliative care, it is ideally provided by a multi-disciplinary or inter-disciplinary team of professionals and other people who have received appropriate training in the field. The members of a paediatric palliative care team will vary according to the needs of the child and family as well as the available resources of the organisation/community. Members of this team can include, but is not restricted to, paediatricians, doctors, nurses, psychologists, social workers, counsellors, teachers, dieticians, physiotherapists, occupational therapists, child life specialists, play therapists, spiritual leaders, music and art therapists, the child and their family.  Where resources allow, families are assigned a ‘key worker’ who ensures a coordinated and timely response to their needs.

There are a range of challenges to the development of PPC services which include:

A lack of understanding about what children’s palliative care is and the need for such services.

There is an assumption that palliative care should not be considered until all curative options are exhausted, whereas palliative care should be seen as significantly improving a child’s quality of life and should be integrated with curative treatment, and throughout the course of their illness.

Adult palliative care specialists may not be familiar with some of the conditions requiring palliative care in children, thus limiting the services they can provide.

A lack of trained personnel worldwide makes developing and scaling-up PPC programmes difficult with limited resource capacity.

There is insufficient evidence on PPC, including the use of medications to treat pain and other symptoms.

Many populations, particularly in LMICs, have limited access to pain-relieving medications, including opioids. Where they are available, they may not be in paediatric formulations and there may be unduly restrictive laws and procedures hindering their use.

Many healthcare professionals have misconceptions about the use of opioids in children, and have little knowledge on how to prescribe opioids for children within palliative care.