Michelle presented three cases of palliative care in adolescence.
Makes point that direct anxiety about death, suffering, direct molecular effects, and family dynamic issues all contribute to difficulties.
E.g. in DMD cognitive development shows unusual cognitive and social skills
Family refusal to talk about feelings exacerbates difficulties.
Useful for clinician to put death out there as a concept, and see the response.
Families very concerned about physical reality of death. Professionals need to engage with this.
You can control symptoms and pain but not suffering.
Some families desperate for death to happen at home, for others need to be in a hospital. Key is respect for views.
Long term illness can rob the child of a peer group.
Story of a bright, willful boy who got fed up with dialysis. Team resources this, boy signed own care plan. Rapid deterioration but manages to make it to 18th birthday and buy a round of drinks!
Paradoxically uplifting story demonstrates primacy of respect for patient self definition.