IMPaCCT Standards for Paediatric Palliative Care in Europe Finella Craig Consultant in Paediatric Palliative Medicine The Louis Dundas Centre Great Ormond Street Hospital for Children NHS Foundation Trust

International Meeting for Palliative Care in Children, Trento (IMPaCCT) March 2006 Health care professionals from Europe, Canada and America met to discuss the current situation of paediatric palliative care in Europe Consensus document for Europe –Defining and identifying standards of care –Recommended implementation in all European countries

Why? Children die Many want to be at home –Often not the resources to support care at home Services available vary –Between countries and within countries –Can depend on diagnosis Lack of paediatric professionals with the right training and skills Funding for services is usually poor

WHO definition of paediatric palliative care Active total care of the child's body, mind and spirit Begins at diagnosis Continues even if a child receives treatment directed at the disease Addresses physical, psychological and social distress Requires a broad multidisciplinary approach that includes the family

Palliative care should be available for children with … Life-limiting illness : Premature death is usual in childhood or early adulthood –eg Duchenne Muscular Dystrophy Life-threatening illness : a high probability of premature death due to severe illness, but there is also a chance of long-term survival to adulthood –eg children receiving cancer treatment

Children who should receive Palliative Care Group 1: Life-threatening conditions for which curative treatment may be feasible but can fail (eg cancer, organ failures) Group 2: Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life (eg Cystic fibrosis.) Group 3: Progressive conditions without curative treatment options, where treatment is exclusively palliative (eg Batten disease, muscular dystrophy) Group 4: Irreversible but non-progressive conditions with complex health care needs leading to complications and likelihood of premature death (eg severe cerebral palsy)

Provision of care Enhance quality of life for the child and family Should begin at diagnosis (including antenatal care) Continued throughout the course of illness Can be given alongside treatments aimed at cure or prolonging life Should be provided wherever the child and family choose to be (eg home, hospital or hospice) Flexibility to move between locations

Unit of care The child and family Family: Those who provide physical, psychological, spiritual and social comfort to the child The child and family must be included in identifying the needs and priorities for care

The care team Sufficient expertise to address all the needs of the child and family –physical, psychological, spiritual, developmental and social Should provide expert paediatric palliative care support and advice 24 hours a day, 365 days a year Ensure continuity of care even where the child is moving between care settings

The care team Should include: –Physician –Nurse –Social worker –Child therapist or psychologist –Spiritual advisor Use resources within the child’s own community where appropriate

Care coordinator or key worker One professional from the palliative care team must be identified as the family’s care coordinator or key-worker Help the family to build and maintain a support system of professionals The care coordinator will act as the main link –Provides continuity of care

Symptom management Good symptom assessment is essential Physical, psychological, social and spiritual symptoms Symptom management must be available 24 hours a day, 365 days a year Symptom management must be accomplished through means acceptable to the patient, family and professionals

Symptom management Symptom recognition and assessment –Elicit information from multiple sources: child, parent, carer etc –Specific consideration for non-verbal children Core principles of symptom management –Severe symptoms are a medical emergency –Holistic approach, not just drug management –Treatment of underlying cause may be appropriate –Avoid invasive and painful routes of drug administration –Use adequate doses

Respite Respite for family caregivers and the child is essential Should be available in the home as well as away from home eg in a children’s hospice

Bereavement Bereavement support must start at diagnosis Continues through the disease process, through death, for as long as needed It must be available to the family, caregivers and others affected Sibling and grandparent support is essential

Age appropriate care Parents are central to a child’s well-being –Present and involved in all aspects of their child’s care, guided by the age and wishes of the child The care team and care environment must be appropriate to age and developmental stage Include access to recreational activities appropriate to age and cognitive ability

Education and training for staff All professionals and volunteers should receive training and support Palliative care training must be a core part of the curriculum for all paediatric health care professionals Each country should develop a national curriculum for professionals working in paediatric palliative care There must be designated centres of excellence providing formal teaching and training in paediatric palliative care

Funding Palliative care services should be available to all children and families who require them Should not depend on family financial or health insurance status Governments need to commit to a national policy and sustained adequate funding Funding must include teaching and training of service providers

The IMPaCCT Charter Ethics and legal rights of children in paediatric palliative care

Equality Every child shall have equal access to palliative care, irrespective of the family’s financial capability

Best interest of the child The best interest of the child is the most important factor in decision making Children will not be subjected to treatments that impose burden without benefit Every child has the right to receive adequate pain relief and symptom management, 24 hours a day for every day needed Every child shall be treated with dignity and respect

Communication and decision making An honest and open approach Sensitive and appropriate to age and understanding Parents/legal guardians centrally involved as partners in all care and decisions involving their child Information shall be provided for the parents, for the child and for siblings according to age and understanding Every child shall be given the opportunity to participate in decisions, according to age and understanding

Care management Children shall be cared for in a child-centred environment They will not be admitted to adult hospitals or adult hospices They will be cared for by paediatric health care professionals with the training and skills to respond to the needs of children and their families

Care management The family home shall remain the centre of care where possible Every family shall have access to a multidisciplinary, holistic paediatric palliative care team in the home Every family shall be entitled to a named key-worker

Respite care Every family shall have access to flexible respite care in their own home and in a home-from-home setting, with appropriate paediatric multi-disciplinary care including medical support

Family support Sibling support must be provided, commencing at diagnosis Bereavement support shall be offered to the whole family and be available for as long as required Every child and family shall have access to spiritual and/or religious care Every family shall have access to expert advice in procuring practical aids and financial support

Education Every child shall have access to education and should be supported to attend their usual school whenever possible Every child shall be given the opportunity to engage in play and childhood activities

IMPaCCT Minimum standards that should be implemented throughout Europe Not immediately 100% implementable in every European country, but what we should be working towards In our own countries we should be: –Raising awareness of the need for children’s palliative care services –Identifying the children –Developing the services –Securing funding –Training staff