QuickTime™ and aTIFF (Uncompressed) decompressor

are needed to see this picture.

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

physiopsychiatry

OTnursing

aroma

Socialwork

volunteer

medical

child

mother

physiopsychiatry

OTnursing

aroma

Socialwork

volunteer

medical

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 multidisciplinary team

Paternalism,autonomy & control

autonomy paternalism

child & family doctor

The critical balance

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