Paediatric Palliative Care: Are we equipped?

Transcription

1 Paediatric Palliative Care: Are we equipped? Finella Craig Consultant in Paediatric Palliative Medicine The Louis Dundas Centre Great Ormond Street Hospital for Children NHS Trust Palliative Care An active approach to the management of children with life-limiting and life-threatening illness Improves quality of life for children and families Palliative care should provide Practical support Emotional support Spiritual support Bereavement support Good symptom management Through life, death and bereavement 1

2 Not just end-of-life care Continuing multidisciplinary care of a life-limited or lifethreatened child Can co-exist alongside treatments aimed to prolong life Children who should receive palliative care Conditions for which curative treatment is possible but may fail eg cancer, prematurity, meningococcal septicaemia Diseases where premature death is likely but long periods of intensive treatment may prolong good quality life eg cystic fibrosis, DMD Children who should receive palliative care Progressive conditions where treatment is exclusively palliative from diagnosis eg spinal muscular atrophy Conditions often with severe neurological disability causing weakness and vulnerability to complications 2

3 40% referrals from community services CCN Community palliative care Hospice Community paediatrician Diagnosis 70% neurological or neurometabolic condition Reason for referral 80% for general support 20% support with symptom management Families and children need palliative care support throughout life, death and bereavement At diagnosis Day-to-day care Periods of illness End of life After death The type of support children and families need and the people who provide the support will vary at different stages of the child s life and death 3

4 A child s paediatric palliative care team is NOT just one person or one team from one organisation A joined-up, three tier system could make a real difference to the lives of children and young people with palliative care needs and their families Palliative Care Services For Children And Young People In England, DOH 2007 Specialist Palliative Care Core Palliative Care Services eg CCN, hospice, bereavement support Universal Services Services available for all children eg GP, education 4

5 Home respite Psychology Bereavement support Community palliative care SPCT Hospice Equipment Spiritual CCN SW Child and family GP Education Local paediatric services Play The palliative care team comprises the most appropriate people with the appropriate skills from the appropriate organisations, providing a joined-up three tier service By including, co-ordinating and supporting these services we can ensure that the child and family receive a holistic package of care A family centred MDT model for service provision Strong partnerships between services Understanding of and appreciation of each others roles Clear overall lead Lead may vary at different times in the child s disease progression Who is doing which bits? Eg different symptoms/problems Everyone feeds back to the lead Constant communication Joint reviews 5

6 Practical support for the family Help to make day-to-day life manageable and enjoyable Aids and equipment SALT, physio, OT Access to education Play and leisure Help with siblings Financial support Respite Someone to help at home Short breaks away from home in hospice Support for disease progression What to expect Treatment choices How symptoms will be managed Who to contact 24/7 Professional who knows the child or has fast access to appropriate information and updated plans is available for advice when child is unwell Support for times of crises Anticipate crises and plan ahead What interventions are appropriate? To ensure active treatment is pursued where appropriate To ensure that futile and unwanted hospital admissions are avoided 6

7 Emergency Care Planning (Ambulance directive/resuscitation plan) Try to discuss early, well in advance of crises MDT approach Strong input from professionals who know the child and family well Community paediatrician, CCN, hospice, school etc Changing goals of care over time adapt as the child s condition changes Plans are circulated including to LAS 24 hour access to a professional who knows the child or has sufficient information to support decision making in a crises Support for time of death Where they want to be Signs and symptoms How to manage symptoms Support available What to do after death Who to contact death certification etc Funeral preparation What to tell the child What to tell brothers and sisters Support for symptom management Anticipation of symptoms and clear written guidelines that parents and professionals can follow Appropriate medication at home, that parents can administer Manage underlying cause of symptom, rather than just treating symptoms eg baclofen to reduce muscle spasm rather than simply giving analgesia Types of symptoms: Complex movement disorders Dystonia and muscle spasms Resistant seizures and prolonged status Complex pain secondary to scoliosis 7

8 Emotional, spiritual and bereavement support For the whole family Starts at diagnosis Continues after death Frequent themes Living with uncertainty Thinking about the future Talking to the child Talking to siblings Everyone who comes into contact with the child and family has a role in providing this support Are we equipped? Yes, but only if. We work as a co-ordinated team, with each member contributing their specific area of expertise Good communication amongst professionals Joint reviews, home visits Telephone, fax, e mail, text Professionals think ahead, have a plan and share the plan Clear lead to co-ordinate care Parents know who to contact Ensure children and families receive a high standard of care that addresses all their needs, from diagnosis, through life, death and beyond 8

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