Transcript The Advance and Emergency Care Pathway for Children and

The Advance and Emergency Care
Pathway for Children and Young
People with Life-limiting or Lifethreatening illness
C&V UHB Child Health Advance and Emergency Care Pathway
Focus Group
Overview
• What is an AECP?
• When to introduce an AECP
• Ethical & legal frameworks for practice
• The AECP process
• The AECP form
The AECP
• Is an expression of wishes
• Is not the same as a DNAR directive
• Aims to facilitate open and effective
communication within the multiagency
team and between the team and the
patient/family
AECP- A framework of care
• Multi Agency
• Travels with the child
• Seamless communication
• Decisions should be made within a trusting relationship and an
ethos of shared decision-making*
• Professionals should be led by the needs of the patient/family
• takes place over a number of weeks, months or years
• Advance care planning may evolve over time*
*Brook et al. A Plan for Living and a Plan for Dying: Advance Care Planning for Children.
Arch Dis Child 2008; 93(suppl): A61-66
AECP- transparent procedure
• For children/young people who die at
home the AECP aims to:
– Ensure that families understand the
multiagency response to death
– Ensure that agencies are appropriately
informed to prevent additional distress to
families
Advance Decisions in Adults • Advance decisions concern the refusal of treatment
• Can be made only by mentally capable people aged 18
and over
• Can be oral or written (unless relating to life-saving
treatment, in which case they must be in writing and
meet further criteria)
• Must specify the treatment being refused
• Healthcare professionals are bound by advance
decisions to refuse treatment
• So an AECP cannot be an advance decision, unless it
meets these basic criteria.
When to create an AECP?
Would you be surprised if this child died prematurely due
•to Predicting
end of life is challenging*
a life-limiting illness?
Would you be surprised if this child died within a year?
• Families benefit from the opportunity to
Would
youinformed
be surpriseddecisions
if this child died
during
make
about
thethiscare of
episode of care?
their child*
Do you know what the patient’s and family’s wishes are for
end of life care?
If the answer to any of these questions is ‘NO’ it
mayJL,be
worth
considering
the experiences
value ofin an
AECP
**Vickers
Carlisle
C. Choices
and control: parental
pediatric
terminal
home care. J Pediatr Oncol Nurs 2000; 17: 12-21
*Brook L, Hain R. Predicting death in children. Arch Dis Child 2008; 93: 1067-70
When to create an AECP?
• Child/YP receiving end of life care
• Child/YP’s condition is such that death may occur at any point
(reasonable risk of life threatening event)
• ‘PICU/HDU route into AECP’ triggered during a recent PICU/HDU
admission
• Professionals, child/YP or family identifying a deterioration in the
patient
• Knowledge of the natural history of the child/YP’s condition suggests
that he/she may be approaching the terminal phase
Benefits and Challenges
Child with Life limiting Illness
Phase Illness
Non Terminal
Immediate Risk
of Acute Life
threatening
event?
Should ACP be
drawn up?
+
Yes- Consider
Yes-
Terminal Phase
+
Ideal
Yes - Should
Benefits and Challenges
Child with Life limiting Illness
Phase Illness
Non Terminal
Immediate Risk
of Acute Life
threatening
event?
Should ACP be
drawn up?
Focus
+
Yes- Consider
Yes-
Terminal Phase
+
Ideal
Yes - Should
• Comfort and support
•Symptom Control
Purpose
•Inform
•Advocate Comfort and
Support
Challenges
•Recognition of End of life
phase.
•Uncertainty
Benefits and challenges
Child with Life limiting Illness
Phase Illness
Non Terminal
Immediate Risk
of Acute Life
threatening
event?
Should ACP be
drawn up?
+
Yes- Consider
Yes-
Terminal Phase
+
Ideal
Yes - Should
•Plan life sustaining treatment
(Modify Risk factors)
•Symptom Control
•likely request for invasive
ventilation
• Comfort and support
Purpose
•Inform
•Advocate for active measures
•Potential considerations for
invasive ventilation
•Inform
•Advocate Comfort and
Support
Challenges
•Conveying Not without hope /not
on slippery slope yet but
uncertainty of illness trajectory
and ALTE makes ACP
reasonable
•Parents may not want ACP
•Recognition of End of life
phase.
•Uncertainty
Focus
•Symptom Control
Benefits and challenges
Child with Life limiting Illness
Phase Illness
Non Terminal
Immediate Risk
of Acute Life
threatening
event?
+
Terminal Phase
+
Should ACP be
drawn up?
Yes- Consider
Yes-
Ideal
Yes - Should
Focus
•Plan life sustaining treatment
(Modify Risk factors)
•Symptom Control
•Plan life sustaining treatment
(Modify Risk factors)
•Symptom Control
•likely request for invasive
ventilation
• Comfort and support
Purpose
•Inform
•Advocate for active
measures
•Inform
•Advocate for active measures
•Potential considerations for
invasive ventilation
•Inform
•Advocate Comfort and
Support
Challenges
•Disclosure of life limiting
illness
•Discuss uncertainty illness
trajectory
•Conveying Not without hope /not
on slippery slope yet but
uncertainty of illness trajectory
and ALTE makes ACP
reasonable
•Parents may not want ACP
•Recognition of End of life
phase.
•Uncertainty
•Symptom Control
Ethical & legal frameworks
- Data Protection Act 1998
-Mental Capacity Act 2005,
-Equalities Act 2010
-Good practice in consent
implementation guide WAG 2008
Who do you need to discuss and
agree the AECP with?
• AECP is not a consent form, but you need
to be clear who is the client!
• For example, no point agreeing an AECP
with parents, if it’s the child/young
person’s consent you need when
implementing the AECP, by providing
treatment, etc
from whom must consent be
obtained?
Capacity to consent
– Understand,
– retain,
– weigh & use information
is it…?
– At 16-17years a young person is
presumed to have the capacity to
consent( MCA 2005)
– for a 16/17 year old with impaired
capacity? A best interests decision
(MCA 2005) must be followed
– Under 16yrs a young person may
have the capacity to consent if they
are Gillick/ Frazer Competent
– A person with parental responsibility ,
if <16 and not Gillick competent
– Or is there a court decision or is one
needed?
Sharing the AECP
• It is essential that you obtain and record
consent from the appropriate person,
before you share the AECP with other
people, agencies!
• Do not rely on parental consent for this if
the child is competent
• If a 16/17 year old lacks capacity to
consent to this, sharing AECP must be a
best interests decision (MCA 2005)
The AECP Process
School
Family
Ty Hafan
Police
Coroner
Ambulance service
GP
Local paediatrician
Community
nurses
Social services
Respite care
Specialist nurses
Specialist paediatrician(s)
PICU
Need for AECP identified
Identify lead consultant
Identify key worker for AECP
Arrange meeting with child/ young
person/family
Discuss with
Paediatric
Palliative Care
team for
support/advice
if necessary
Discuss wishes and complete form
Identify first contact for family
Handwritten form signed by lead consultant & family
Give copy of form to family
MDT
meeting
Key worker distributes copy of plan to all
on agreed distribution list
AECP should be reviewed/revised as
necessary – at least every 12 months
Key worker should co-ordinate this process
Child dies at home
Parents call agreed 1st contact
Worker will offer telephone support or go to home
depending on family’s preferences
IF AT ANY STAGE ANY PROFESSIONAL HAS
CONCERNS THAT THE CHILD’S DEATH MAY
Worker phones GP, if available, to certify death
NOT HAVE
OCCURRED
NATURALLY
OR AS
If GP unavailable
OOH doctor
contacted to verify
death and GP requested to complete death
certificate ASAP
EXPECTED THE POLICE MUST BE INFORMED
IMMEDIATELY
Next working day: 1st contact to inform Detective
Inspector in local Public Protection Unit of child’s death
then hands over if appropriate to key worker.
Team to assist family with their wishes for saying
goodbye to the child and funeral arrangements.
Key worker to inform all agencies and holders of the
plan.
The AECP form
• 12 pages long
• Contact details
– Family
– Professionals
• Treatment plans
– Acute deterioration
– Slow deterioration
– Symptom care
• Clarity of documented
wishes
• Consent to information
sharing
Completing the form
• Ensure form is dated (first completion,
amendment & planned review)
• Current form should be filed at the front of the
child’s medical case-notes
• Non-current forms should not be destroyed
• Send completed audit form to Dr Sian Moynihan,
St David’s Children’s Centre
Supporting documentation
• To be found on the clinical portal:
– Background information
– Guidance on the process and formcompletion
– Information sheet for families and for patient
– Example covering letter to professionals
– Additional guidance:
• Actions to take when a child dies
• Involving the Coroner, Police & Ambulance
– Audit form
Conclusions
• AECPs should replace DNAR orders
• AECPs support and evidence discussions taking place in
different settings
• AECPs are transportable, visible and consistent
• AECPs facilitate multiagency support from point of
diagnosis through to death and into bereavement
One last thing
•
The document cannot predict all eventualities
• A valid document will contribute information to decision
making
• The responsibility of interpreting a AECP lies with most
senior available professional at time of treatment
• Professional judgement must be used when interpreting
the document
• If under the AECP, the child/young person needs
treatment, ENSURE you obtain consent from the right
person!
For support/advice please contact:
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Dr Richard Hain, Consultant in Paediatric Palliative Medicine, UHW
Dr Sian Moynihan, Consultant Community Paediatrician,
Dr Michelle Jardine PICU Consultant
Dr Jennifer Evans Consultant Paediatrician
Dr Joan Bongili Associate Specialist/ Dr Cath Norton Consultant, CD
Dr Victoria Lidstone Consultant Adult and transition Palliative Care
Julia Barrell Mental Capacity Act Manager
SNHV, Special School nurse leads
Ty Hafan Cath Thompson Assistant Director of Care
Police DCI Richard Jones
Ambulance Andrew Jenkins Consultant Paramedic
Acknowledgements
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Dr Charlotte Mellor, SpR Palliative Care , Bristol
Dr Sian Moynihan, Lead Consultant Community Paediatrician
Dr Michelle Jardine, Consultant Paediatric Intensive Care
Dr Cath Norton, Consultant Community Paedaitrician
Dr Helen Fardy, Consultant Paediatric Intensive Care
Dr Louise Hartley, Consultant Paediatric Neurologist
Dr Richard Hain, Consultant Paediatric Palliative Medicine
Dr Graham Shortland, Consultant Paediatrician
Cath Thompson, Assistant Director of Care, Ty Hafan Children’s Hospice
Mrs Hilary Valle, Parent representative
Liz Pendleton, Lead Nurse, Children’s Community Nursing, Cardiff
Carys Davies, Special Needs Health Visitor
Wendy Herbert, Lead Health Visitor
Dr Rhodri Lewis, General Practitioner
Chris Horrocks, Team Manager, Child Health and Disability Team, Cardiff
Janet Stroud, Assistant Team Manager, Child Health and Disability Team, The Vale of Glamorgan
Ms ME Hassell, HM Coroner for Cardiff and The Vale of Glamorgan
Rhiannon Beaumont-Wood, Welsh Ambulance Services NHS Trust
Diane Rogers, Lead for Paediatric Physiotherapy, UHW
Sue King, Parent Counseling Service, UHW
Nuala Mahon, Lead Nurse for School Health
DCI Richard Jones, Major Crime Investigation Unit
Dr Jo Griffiths, Consultant Community Child Health, ABMU
Neath/Port Talbot Children’s Safeguarding Management Board