Download Dr Amelia Stockley - Association for Palliative Medicine

Transition from children’s to adult
palliative care services
Meeting of the
Transition & Neurological Palliative Care SIFs
Dr Amelia Stockley
24th June 2016
Outline
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Me
Transition
Context
Keyworking
Children’s and adult palliative care services
What do adult PC services need to know?
What could adult hospices be doing?
Show and tell
Me
What is Transition?
Initiation
Paediatric services
Supporting the process
Destination
Adult services
30 years ago
Paediatric services
Adult services
15 years ago
Paediatric services
Adult services
Now
Paediatric services
Numbers increasing
More Complex
Adult services
A ‘tender’ time
• Impact of chronic ill-health, physical and cognitive disability
on development/tasks of adolescence
• Both ways
• Instability
• Use of healthcare services
• Coordinated planned process vs documentation
Harden P et al. Bridging the gap: an integrated paediatric to adultclinical service for
young adults with kidney failure. BMJ 2012;34
Important to get the healthcare
transition right
Together for Short Lives
Transition Taskforce
PENTAGON of SUPPORT
Context
What’s happening elsewhere?
In the hospital setting…
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Transition steering groups
AHP e-learning
Ready Steady Go
Transition clinics
Advance experiences
Transition coordinators
Admission processes, passports
Learning disability teams
Elderly care, neurorehab
In the primary healthcare setting…
• Community paediatricians piloting handover
clinics with GPs
• Vanguard projects
• GP EOL care champions and extensivists
• Community matrons and district nurses
forming relationships with community
paediatric nursing teams
In social welfare...
• CCGs appointing nursing/SW transition
coordinators that work cross sector
• Collaborative joint commissioning
• Integrated health and social care projects
• SEND reforms, EHC plans
Response from the charitable sector…
• YP affiliated or integrated units
• Locally evolved services
St Oswald’s Hospice
The keyworker
“The role of a key worker is well
received by young people and families
who see this role as reducing the
repeated contacts which need to be
made with multiple services”
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To do list…….
Healthcare
• identify key coordinator
• identify community health provision e.g. I⁰ care teams, LD
teams, DNs inc use of agencies, AHPs
• involve adult hospices for palliative and EOLC
• look at 2⁰ care provision e.g. admissions procedures including
admission ‘passports’, ward environments, clinics etc.
• engage in discussions and documentation around ACP, EOL
preferences, DNACPR, treatment escalation plans
Social care
• think early about translating sophisticated and often complex
24/7 home care-packages from children’s to adult services
• identify appropriate respite provision
• access to benefits advice as well as education around
personal finance and personal budgets
To do list cont……
Education
• support access to further and higher education inc attainment of
life-skills, assisted technology, apprenticeships and work-based
learning
• ensure the development of Education, Health and Care (EHC)
plans where indicated
Work and Leisure
• identify suitable day care, social and leisure provision including
access to arts, sports, holidays, social networks and support
groups
• consider involvement of local employment agencies
• look at opportunities for vocational training
Independent living
• find appropriate accommodation to support independent living
• consider shared accommodation
• look at the family home
Take home message 1
NOT asking adult palliative care services to ‘do
transition’
Rather to be able
to provide palliative and end of life care to
young people who in previous generations were
expected to die in childhood but are now living
into and dying in adulthood.
Adult (Specialist)
Referral
Conditions
Symptom crisis, EOL
Curative therapies exhausted
GSF
Mostly Ca
Children's (Generalist)
From diagnosis, life long
(sometimes antenatally)
Diverse conditions, often assoc with
Prognosis relatively predictable major disabilities inc LD, wheelchairs,
technology dependence
Admissions Mostly sc or EOL
Some planned e.g. Tx
Occas social crisis/CHC
Prognosis less predictable
Focus on planned respite care
EOL, sc
Stepdown, Cold room use
Physio/OT
Goal focused and short term
Duration
Weeks → months
Generally long-term support with
preventive & therapeutic aims
Months → years
Services
Comprehensive day services
Large community teams
Generalist thru GPs
Medical specialists
Many hospices covered by GPs, fewer
PPM specialists
Medical
cover
Models of service provision:
children’s vs adult’s hospices
Children’s
services
supportive
palliative
EOL
Adult
services
Numbers?
• Fraser et al 2011 55,000 young adults 18-40
yoa in England living with LSC
• Fraser et al 2015 rise in prevalence from 75 in
2009/10 to 95.7 in 2013/14 per 10,000 025yoa
• CHSW 90 children ≥16 years 2016
• Underestimate
• Hidden population
Total DMD in South West 96
Palliative care and EOL care for young adults
• Raising awareness
• Education
• Don’t know what
we don’t know
What do adult PC services need to know?
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Conditions
Eligibility
Symptom control
Medical technology
Learning disabled and challenging behaviours
Manual handling and mobility inc wheelchairs
Positioning/sleep, preventative physiotherapy
You what?!
Dravet’s
Prader-Willi
Lennox Gastaut
Lesch Nyan
Leigh’s Disease
Cat Eye syndrome
Muscle-Eye-Brain disease
Pelizaeus-Merzbacher Mutation
Aicardi Goutieres
Batten’s disease
Wolf Hirschon
Lissencephaly
Ex-premature c complications
HIE
End stage renal failure
Septo-optic dysplasia
SMA
Cerebral Palsy
Spastic Quadriplegia
Patau
Nieman Pick
Metachromatic leukodystrophy
Cockayne
West
San Filippo
Millar Dicker
Hypomelanosis of Ito
DMD
Huntingdon’s Chorea
Friedrich’s Ataxia
Systemic hyalinosis
Corpus callosum agenesis
Acquired brain injury
Vein of Galen aneurysm
Spina Bifida
Epidermolysis bullosa
ACT categories
Category
1
Description
Life-threatening conditions for which curative treatment may be
feasible but can fail
e.g. cancer, irreversible organ failures of heart, liver, kidney
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Conditions where premature death is inevitable
e.g. cystic fibrosis, muscular dystrophy
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Progressive conditions without curative treatment options
e.g. Batten’s disease, mucopolysaccharidoses
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Irreversible but non-progressive conditions causing severe disability,
leading to susceptibility to health complications and likelihood of
premature death
e.g. severe cerebral palsy, multiple disabilities such as following brain or
spinal cord injury, complex health care needs, high-risk of unpredictable
life-threatening event or episode
Category 4 Toolkit: Vulnerability Factors considered for acceptance of Children with Cerebral Palsy or other
static neurological conditions to Helen House Harrop, E and Brombley, K (2012)
Respiratory
factors
Frequent or increasing number of lower respiratory infections
PICU admission for lower respiratory tract infection
Requirement for long term oxygen therapy or non-invasive ventilation at home
Tracheostomy and / or 24 hour ventilation
Feeding
Factors
Gastrostomy
Jejunostomy and/or Severe uncontrolled reflux despite maximum treatment
Losing weight due to feeding difficulties
Pain / distress associated with feeding, causing progressive feed reduction
Seizure
related
factors
Epileptic activity needing medication
Poor seizure control despite numerous drugs
Frequent use of rescue medication (daily basis)
Episodes of status epilepticus requiring intensive treatment (IV infusions / PICU)
Locomotor
Factors
Spastic quadriplegia / total body involvement
Poor head control/ fixed spinal curvature
Dependent on a wheelchair driven by a carer
Difficulty with maintaining sitting position
Other
Neurological
vulnerability
to consider
Other evidence of severe bulbar involvement (worsening swallow, cough, gag
reflex)
Baclofen pump (as a marker of severe hypertonia / very difficult spasms)
VP shunt (particularly with frequent need of review)
Technology dependence and equipment
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Respiratory support
Nutrition: enteral and parenteral
Intrathecal delivery of medications
Cochlear implants
Deep brain stimulation
Wheelchair services, manual handling and
positioning/sleep systems
• Complex skin dressing
regimens
• Communication devices
Learning disability
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Accessing services
Preconceptions about QOL
‘My traffic light’, hospital passport
Capacity, advocacy support, DOLS
Learning disability nursing teams
Resources/literature
What else?
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Communication
Collaborative communication
Legislation MCA/DOLS
ACPs
The family unit &
the role of
parents/carers
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unique contexts
parents/carers are nearly always relevant and close
often experts in providing care
involvement can facilitate routine care
involving the family in decision making can
• support effective advance care planning and decision making
• facilitate positive outcomes in bereavement
Life experiences impacting on advance
decision making
• Significantly different growing up experiences
• Under-developed psychosocial skills
• Different developmental trajectory - ?in reverse
• Restricted cognitive development & learning
• Chronic ill health & repeated near death
experiences impacting on understanding of their
own mortality, expectations and aspirations
What could adult hospices be doing?
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Lead for transition
Collaborate with local children’s hospices
Day services
Education and awareness raising around
medical technology
• Environment: adolescents and manual
handling
• Initial assessment stays
Respite = supportive care
• think about what’s gone before
• detailed review of health and social care needs inc
- symptom control
- access to allied health & support services for
patient/family/carers
• valuable social interaction & peership support
Take home message 2
NOT expecting adult palliative care services to
provide respite
BUT we do need to
be aware that specialist respite is a vital
component of the supportive care for these young
people and at present such specialist provision is
very very scarce
Some of the adult hospices actively
engaged in palliative care for young adults:
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St Gemma’s, Leeds
Shakespeare Hospice, Stratford
St Christopher’s, London
St Joseph’s, London
St Elizabeth’s, Ipswich
St Giles Hospice, Walsall
North Devon Hospice, Barnstaple
Hospice Cornwall, St Austell
Dorothy House, Bath
YOU!.............................etc.
Conclusions
1. Take home messages
2. Palliative and EOL care should be easy?
3. Supportive care which includes respite
provision is a harder problem to solve
4. Find out what is happening locally
6. Join the SIF &/or your local TT RAG!
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