planning care for the long-stay patient louis reynolds zanda jaquire carla brown jane booth...
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Planning care for the long-stay patient
Louis ReynoldsZanda JaquireCarla BrownJane Booth
Paediatrics & Child Health, Child Psychiatry, UCTNursing & Social Work, Red Cross War Memorial Children's Hospita.
AJ, age 12 years
‘Found’ in ward: – “Renal failure & hypertension”– Transferred from ICU
• Clinically:
– Extreme apathy; appears traumatised
– Very weak & wasted– Poor respiratory efforts– Hypertensive– Mother tired and dazed
AJ, age 12 years
Pre-ICU history:
1 month – abdominal pain
– Seizures
– TB contact, on treatment
– "Malnutrition"
– "LMN signs (acquired)",
– renal failure
– hypertensive encephalopathy
No clear diagnosis or plan
AJ, age 12 years
Assessment:
– Paralytic disease, ?G-B syndrome
– Respiratory pump failure
– ? Autonomic instability
Back to ICU for ventilation
protracted course anticipated
Some long stay issues
• The medical problem– Diagnosis, prognosis, management
– Complications
– Iatrogenesis
• The environment: – child-friendly or hostile
– predictable or unpredictable
• Growing psychosocial issues– Vulnerability
– Powerlessness
– Loss of identity
– Disconnection from family and social networks
Some essential principles
• Keep children out of hospital• Give the ‘best possible’ care• Secure, clean, ‘child-friendly’ environment• Communication & sharing information• Respect the child as a person today, with human rights
– Provision– Protection– Participation– The ‘best interests’ principle
Some essential principles
• Lay the medical foundation– Diagnosis, prognosis,
management– If diagnosis unclear, keep
minds open, focus on problems– Continuity of care
• Demedicalise the child’s life– Daily routine– Activities; timing critical– Never make false promises– Demystify technology, etc etc – Protect, promote & advance her
[& family’s] right to participate
The final lesson I'm going to share is this.
The very painful thing … is the feeling that the situation is out of your control.
When the system that surrounds you is top-down, bureaucratic, inhuman -- that can only increase your feelings of helplessness.
So a really big difference we can make is to put more power and control right into the hands of parents, carers or those with disabilities
David Cameron, The Independent, 16 July 2009
The golden rules
Lay a sound medical foundation, then demedicalise her lifeKeep her at the centreKeep her in the family
Keep her & her family in controlAvoid paternalism