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Management of a teenager who declined a deceased donor transplant

Management of a teenager who declined a deceased donor transplant. By Katie Naylor and Rachel Shaw Evelina London Children's Hospital. Objectives. Investigate and evaluate the management of a teenager who declined a deceased donor kidney transplant. History of Patient.

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Management of a teenager who declined a deceased donor transplant

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  1. Management of a teenager who declined a deceased donor transplant By Katie Naylor and Rachel Shaw Evelina London Children's Hospital

  2. Objectives • Investigate and evaluate the management of a teenager who declined a deceased donor kidney transplant.

  3. History of Patient • 16 year old boy who lives with his mother. • End stage kidney disease secondary to post urethral valves and dysplastic kidneys. • Three times weekly haemodialysis for 16 months before his first call. • Dad attended the unit two out of the three sessions. • Autistic spectrum disorder, of the Asperger type, high functioning. • Experienced “melt downs” when changes occurred in his treatment routine. • Staff found his behaviour abusive and unacceptable as verbally aggressive at times. • Due to his challenging behaviour a “behaviour contract” was drawn up for the team to work with in both supporting and managing his behaviour. • He refused to partake in schooling after 8 months on dialysis. • He was known to psychology and had been meeting with them since the age of 9.

  4. What is Asperger’s Syndrome Asperger’s Syndrome is a neuro-developmental difference that falls within the autistic spectrum. There are four main areas that asperger syndrome is characterised by: • Social Interaction • Communication • Imagination - an example of this is imagining what others are thinking. • Sensory sensitivity - for example finding lights to bright, noise, textures, tastes, touch, smells. Lorna Wing (Burgoine & Wing 1983) described the main clinical features of Asperger’s Syndrome as: • Lack of empathy • Naive, inappropriate, one-sided interaction • Little or no ability to form friendships • Pedantic, repetitive speech • Poor non-verbal communication • Intense absorption in certain subjects • Clumsy and ill-coordinated movements and odd postures

  5. I`m not rude,bad,hyper,or shy. I have ASPERGER`S ! What`s your excuse?

  6. Initial preparation for transplant • Medical Transplant Workup. • Play specialist input, minimal • The decision was made not to have a central line.

  7. Getting “The Call” • Patient was called at 0500 for a deceased kidney transplant, he had been on call for 16 months. • He was at his mother’s house and his father was away so unable to attend. • He was prescribed diazepam to help with his nerves

  8. What happened next… • Following this discussion : • Patient arrived at the Evelina London at 0900. • Final Crossmatch bloods taken from Permacath. • Patient met with the on call anaesthetist. • Patient became very distressed, angry and “difficult” to manage. • Further oral diazepam given • Father on way to hospital.

  9. Patient declined kidney transplant • On-call consultant arrived. • Patient reported to feel physically ok but no longer felt psychologically prepared. • The patient was discussed with the head renal consultant. • Kidney reallocated to another recipient

  10. Nursing this patient • Nursed in a cubicle,preferably, with the blind shut and the lights off. • He had hypersensitivity to light, sound and touch. • Engage in little conversation • Did not wish to engage with any peers

  11. What happened following the refusal? • Removed from the transplant register. • MDT meeting • Patient had a clear plan of objectives to meet prior to going back on-call • He was given the opportunity to have a tour of the theatres but declined. • The patient met with the play specialist on a weekly basis and with the consultant monthly until he received the call.

  12. The transplant • The patient was returned to the transplant register after 8 weeks. • He received the call 8 months later and we are pleased to say that he had a successful kidney transplant. • He is now at university and has transitioned to the adult unit on his 18th birthday.

  13. Evaluation • Failure?!? • Perhaps, the latter more detailed plan should have been done initially ! • Beyond our control but it would have been preferable for this patient to have not received a kidney at the weekend Any questions/ suggestions to how your unit may have avoided this?

  14. Reference List • Burgoine, E. & Wing, L. (1983), "Identical triplets with Asperger's Syndrome", British Journal of Psychiatry, 143, pp. 261–265.

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