Paediatric Home Ventilation Discharge planning

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Paediatric Home Ventilation Discharge planning

• Colin Wallis
• Respiratory Unit
• Great Ormond Street Hospital

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• Is my patient a candidate for home ventilation?
• Is it safe to send them home?
• How can we get them home quickly?
• Who is responsible for them after discharge?
• Why are we doing this? Is it worth it?

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What is long term ventilation?

• Any child who, when medically stable, continues
  to need a mechanical aid for breathing, which may
  be acknowledged after a failure to wean, or a
  slow wean, three months after the institution of
  ventilation.

Jardine Wallis Thorax 199853762-767
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Numbers of Long-term Ventilated Children - UK
1. Robinson, Arch Dis Child. 1990651235-6 2.
Jardine, Wallis, BMJ. 199918295-9
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Diagnosis
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Who Can Go Home?

• Stable airway
• Oxygen requirements lt40
• Home ventilatory equipment can maintain safe
  levels of pCO2
• Other medical conditions well controlled
• Willing and capable parents
• It is practical to provide the level of support
  and intervention that the child requires at home

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Where are the LTV children?
n 241
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• Is my patient a candidate for home ventilation?
• Is it safe to send them home?
• How can we get them home quickly?
• Who is responsible for them after discharge?
• Why are we doing this? Is it worth it?

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What Are We Trying To Do?

1. Meet metabolic and ventilatory requirements
   safely
2. Optimise (sustain extend) the quality of life
3. Sustain or improve growth and development
4. Prevent or minimise complications
5. Provide cost-effective care
6. Maintain the child within their family unit

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Is Discharging a 24 hr Ventilator Dependent Child
Safe?

• SAFETY vs SUCCESS

Attitudes to risk Professionals vs parents vs
child/adolescent
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• Is my patient a candidate for home ventilation?
• Is it safe to send them home?
• How can we get them home quickly?
• Who is responsible for them after discharge?
• Why are we doing this? Is it worth it?

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What Are the Placement Options?What Do You Think?

• Someone elses PICU
• Transitional Care Unit
• Specialist respiratory ward
• General paediatric ward in DGH
• Designated centres
• Peripatetic expert teams

. . .
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On the Road to Discharge....

• Stumbling blocks
• Hurdles
• Brick walls

• Carers, funding
• Changes to family, housing
• Parental refusal,
• Unstable medical condition

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Ten Essential Ingredients Towards a Successful
Discharge

• 1. Involve the family
• 2. Establish the child on designated equipment
• 3. Identify co-ordinator(s) hospital key worker
• community key worker
• 4. Identify a discharge team
• 5. Inform the purchasers and give them the list

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Ten Essential Ingredients Towards a Successful
Discharge

• 6. Review housing and emergency services
• 7. Recruitment and training nurse/carers
• 8. Educational review
• 9. Agree written emergency procedures and respite
  arrangements
• 10. Trial run

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• Is my patient a candidate for home ventilation?
• Is it safe to send them home?
• How can we get them home quickly?
• Who is responsible for them after discharge?
• Why are we doing this? Is it worth it?

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Three Central Themes

• The child is a member of the family
• The family must be supported and involved in
  decision making
• Responsibility transfers from the hospital to the
  community health team and the family at discharge

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WITH ACKNOWLEDGEMENT TO Dr Jane Noyes
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The day you get home is the day that the journey
really begins

• THE BIG 3 UNPREDICTABLES
• Carers
• Families
• Underlying condition

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The Underlying Condition

• Ventilated children,
• as they grow
• and develop,
• have lives
• that unfold

slowly unpredictably
individually
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• Is my patient a candidate for home ventilation?
• Is it safe to send them home?
• How can we get them home quickly?
• Who is responsible for them after discharge?
• Why are we doing this? Is it worth it?

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Is it worth it? - costs
ANNUAL COSTS 24 home care package 180,000 Transi
tional care unit 258,420 PICU 500,000
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Is it worth it? - outcomes
No. of children
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Is It Worth It? - The GOS Experience

• Discharged
• 39 children on 24 hour ventilation
• median age 4 years, TTD 9 months
• Outcome
• 7 died ,
• 17 continue ventilation (0.2 7 years),
• 15 came off the ventilator (median time 4 years),
  
• 2 went pear shaped
• Least likely to wean
• Neuromuscular
• Most likely to come off
• BPD, malacia

REF Edwards ADC 200489251-5
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Is it always worth it?
How did we get into this mess?
What are we doing here?
What is the meaning of life?
Who did a trache on this child?
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Juggling Technology, Ethics and the Law

• Technology what we can do
• The law what we must or must not do
• Ethics what we ought to do

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Conflicts in Difficult Decision Making
The players
The Rules

• Ethics
• Secular morals
• Religious beliefs
• The law
• The GMC

• The parents
• The patient
• The wider family
• The doctors all of them
• The other professionals
• The communities
• The lawyers

The game

• A game of two rights
• A game of two wrongs

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Home ventilation can be good for youFuture
challenges

• Getting the patient selection right
• Coping with the info age working with the
  parents
• Child friendly ventilators and interfaces
• Getting the package together quickly
• Careful audit
• numbers
• impact on families
• long-term outcomes