Maggie Breen-CNS CYPOONS RMH Bev Barclay-RGN/RSCN Nursing Director J’s Hospice Lives at home Father - prison officer Mother - teaching assistant Brother Jed 13years Sister Alex 17years 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 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  • Temazolomide Joe decides he wants to sperm bank Prior to oral 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 Review in clinic - atypical course ? Potential for adult clinical trial - biopsy for histological diagnosis (June 08) • Anaplastic Astrocytoma WHO Grade PCV chemotherapy regime June 08-Oct 08 - July 08 letter for A/E department local hospital (no shared supportive care) • Referral to adult phase 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)  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  Paediatric service - Family centered care  TYAC service - Individualised & family centered care  Adult service - Individualised care     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 Challenges (cont)     Important when working with young people we 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 • Health: • Independence – Feeling of weakness – Loss of energy – Body image (physical) changes – Less able to participate in sports Joe felt that the changes lowered his standing with his peer group – anger at his increasing dependence on his parents (loss of control) – missed driving his car – Relationship with siblings (?unequal) • 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 • • Effective team working was central across care boundaries Joe’s trust in paediatric neurooncologist/paediatric neurosurgeon? – reflection – adaption – full team participation • The skills of the MDT team were recognised and valued  How:- ◦ effective communication (not always given the respect it deserves) ◦ Support ◦ Information ◦ appropriate advance care planning ◦ access to equipment ◦ 24 hour symptom control  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  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 “normal” things 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