maggie breen-cns cypoons rmh bev barclay-rgn/rscn nursing director j’s hospice
TRANSCRIPT
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Maggie Breen-CNS CYPOONS RMHBev Barclay-RGN/RSCN Nursing Director
J’s Hospice
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Lives at home Father - prison officer
Mother - teaching assistantBrother Jed 13yearsSister Alex 17years
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Radiological (MRI) diagnosis July 03
1yr prior history of GP contact/paediatrican and neurology review due to blurred/ double vision
Joe’s favourite subject sport - completes long distance running on regular basis
- Know experiencing right sided squint after exercise for prolonged periods
Treatment Cranial radiotherapy
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Completed GCSE/ A levels Participates in sports Works at Barclays bank (Clerk &
computers) Qualified car driver Has girlfriend-close intimate relationship Lives at home and has close relationship
with Alex (sister) who has a young son Clinical and radiological (MRI) evidence
of disease progression
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• Prior to oral Temazolomide Joe decides he wants to sperm bank
Chemotherapy Oct 06 - Sept 07 Clinical signs of progression Dec 07 Joe 19 years• Temazolomide (different regime) Dec 07- March 08 - Letter to employer-request break from
computer during working day
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Review in clinic - atypical course
? Potential for adult clinical trial - biopsy for histological diagnosis (June 08)• Anaplastic Astrocytoma WHO Grade 3
PCV chemotherapy regime June 08-Oct 08- July 08 letter for A/E department local
hospital (no shared supportive care)
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• Referral to adult phase 1 clinical trial drug development unit but:
- LFTs elevated, thought to be drug (chemo) related not disease SO
• Liver biopsy Nov 08
• LFTs remain elevated so not eligible for clinical trial (concern at wait by Joe & his parents for improved LFTs, as Joe’s physical health declining)
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Joe’s weekly LFTs check Dec 08 - LFTs stabilising therefore OPD
appointment late December (Joes request) Jan 09 drug development unit-
performance status (scale) makes Joe ineligible for open phase I clinical trial
Jan 09-Feb 09 oral Cyclophosphamide/ Retinoic acid/Doxycycline
March 09 Joe at home- RIP
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Paediatric service - Family centered care
TYAC service- Individualised & family centered care
Adult service
- Individualised care
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Joe was referred to an adult palliative care team Lead care from a paediatric tertiary cancer centre District General Hospital (adult service) did not
know Joe – refused to share supportive care needs - District Nurses unable to access his Portacath
Adult palliative care team: ◦ desire to care and palliate◦ Tertiary hospital - (expertise on tumour type),
Clinical trials (benefits / risks) ◦ On treatment at time of death◦ Potential stress between expectations (of
clinicians/ Joe and/or parents?) and the reality of what was possible.
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Challenges (cont)
Important when working with young people we do not replicate the paediatric model
Joe given every opportunity to discuss death and dying-it was his choice not to engage
Important to consider capacity in brain tumours
He chose to maintain hope and talk about the future
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• Health:– Feeling of weakness– Loss of energy–Body image (physical) changes– Less able to participate in sportsJoe felt that the changes lowered his standing
with his peer group
• Independence– anger at his increasing dependence on his
parents (loss of control)–missed driving his car–Relationship with siblings (?unequal)
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• Relationship with girlfriend– broke off his relationship – protected her from the
pain of separation caused by death– did not want to be pitied
• Absence from work– interfered with his vocational plans– financial concerns– Social role
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• Effective team working was central across care boundaries
• Joe’s trust in paediatric neuro-oncologist/paediatric neurosurgeon?– reflection– adaption– full team participation
• The skills of the MDT team were recognised and valued
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How:-◦ effective communication (not always given the respect
it deserves)
◦ Support
◦ Information
◦ appropriate advance care planning
◦ access to equipment
◦ 24 hour symptom control
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Palliation aimed at young people needs to be flexible and responsive to their (and parents) needs
For Joe to die at home the necessary services and infrastructure were available.
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Involvement in decision making wanted his parents involved (Parents have always been involved) wanted to be at home independence very important to Joe wanted opportunities to do “normal” things
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Important: although young people may have the same physical symptoms as adults, not all will be in a position to cope with them or to accept that death is unavoidable.