Transcript IMPaCCT Standards for Paediatric Palliative Care in Europe

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
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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:
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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
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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
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