Establishing a state-wide Paediatric Palliative Care program in WA
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1 Establishing a state-wide Paediatric Palliative Care program in WA Stephanie Dowden / Marianne Phillips Paediatric Palliative Care Princess Margaret Hospital for Children Perth, Western Australia
2 Western Australia Area = 2.5million km 2 30% mainland Australia Population = 2 million 20% are 0-14yrs 75% live in greater Perth area
3 Palliative Care at PMH Oncology Department began palliative care for oncology patients ~10 years ago following a service review: Implemented a Oncology Total Care Unit model with a case management approach Palliative care part of this model
4 Palliative Care at PMH With the Oncology TCU palliative care model the lack of services for non-oncology patients became obvious No focus on PPC needs for non-oncology children Medical model/hospital-based care Few choices offered to families Ad hoc planning
5 Palliative Care at PMH Paediatric Palliative & Supportive Care: the needs of children and families in WA (2004/2005) Identified child/family needs: to be at home to be supported by PMH to have information/education to have access to respite to have support for community-based health professionals
6 Palliative Care at PMH WA Cancer & Palliative Care Network Federal funding to support PPC model Project Worker (part time) PMH Foundation funding CNC (full time) Medical Consultant (1 session/week) Continue current Oncology PPC service New focus on non-oncology population State-wide service
7 Aims for non-oncology PPC PPC CNC to focus on this group of children Aim to bring their care to the level offered to the oncology PPC group once achieved, consider merging of some PPC services
8 Non-cancer diagnoses Perinatal congenital anomalies complications of prematurity birth asphyxia/hie Neurological neurodegenerative (Batten disease) neuromuscular (muscular dystrophies, spinal muscular atrophy) Cerebral Palsy, HIE Organ failure liver, heart, renal Progressive metabolic disorders Hurler s, Niemann-Pick, Krabbe, Tay-Sachs Chromosomal abnormalities trisomy 13, trisomy 18 Congenital anomalies cardiac, spina bifida, CNS, gastrointestinal, pulmonary Respiratory CF, BPD Infections HIV, TB
9 Key issues for non-oncology PPC population Uncertain illness trajectory Often progressive conditions Complex co-morbidities Rare/Unknown disorders Genetic implications (e.g. siblings affected) Increasing complexity of medical interventions Parental workload and ongoing stress Multiple teams and services involved
10 Variable trajectories in non-oncology conditions May have periods of good health or plateau at a stable state May have many near-death episodes then stabilise May have slow deterioration with acute final stage This variability leads to uncertainty and potential reluctance to refer to PPC services
11 PMH PPC Referral Criteria Life-limiting Illness (LLI) / non-curative condition AND/OR DNR order in place AND/OR Possibility of death in next 12 months OPEN REFERRAL SYSTEM
12 PPC aims Provide comfort and symptom management Facilitate decision making Help coordinate care and improve communication Family-centred care in truest sense: child, sibling, family care Provide practical help with equipment, medications, respite Ensure families have support during bereavement Hope for the best, prepare for the worst
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14 Quality Assurance tools Child & Family QOL tool (PEDS QL) Family PPC Satisfaction Tool weefim (physical ability) Symptom assessment EOL survey & Satisfaction with PPC survey Staff Family
15 Sources for PPC tools
16 Care plans PPC care plans DNR/AND documentation Symptom management plans End-of-life plans Increased staff satisfaction: We knew what to do as there was clear documentation
17 The first 4 months - statistics First 4 months: 18 referrals 2 families with siblings affected 17/18 are non-verbal (incl 3 infants) with significant medical comorbidities and/or disabilities 3 terminal at referral 3 with pending PPC needs 4 deaths
18 The first 4 months - diagnoses Neurological neurodegenerative, neuromuscular, CP, HIE Chromosomal abnormality Cardiac Perinatal
19 Key PPC issues so far Communication issues around medical treatment options Medical complexity of patients co-morbidities high level of medical technology Need for excellent interagency cooperation Child Protection involvement with 30% of referrals Complex ethical issues Low level of understanding of PPC Need for education: PMH, agencies, general community
20 Key PPC issues so far Communication around treatment options Has the medical team explained the situation? Has the family heard what was said? Is the treatment helpful, burdensome or futile? Have all options been explored? Is there a plan for care? Is there a DNR/AND document?
21 A parent s words Our palliative care nurse had discussed in depth with me the journey we were now going to embark on with M, what we wanted her to experience and what we could expect in the coming weeks. This was all about M and her body: regaining control of her life and making the precious time we had left as comfortable and pleasurable for her as possible and for us it was about making memories.
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