1. Paediatric Home Ventilation Discharge planning Colin Wallis Respiratory Unit Great Ormond Street Hospital

2. .

3. 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?

4. 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 1998;53:762-767

5. 1. Robinson, Arch Dis Child. 1990;65:1235-6 2. Jardine, Wallis, BMJ. 1999;18:295-9 Numbers of Long-term Ventilated Children - UK

6. Diagnosis: Central control: - CCHS, post infective, metabolic, High spinal injury Neuromuscular - myopathy, DMD, SMA Chronic lung disease - hypoplasia, BPD, ILD Obstructed Airways - craniofacial, malacia

7. Who Can Go Home? Stable airway Oxygen requirements <40% Home ventilatory equipment can maintain safe levels of pCO 2 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

8. Where are the LTV children? n = 241

9. 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?

10. 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

11. Is Discharging a 24 hr Ventilator Dependent Child Safe? SAFETY vs SUCCESS Attitudes to risk: Professionals vs parents vs child/adolescent

12. 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?

13. Don’t you think it would be best if you took this child over and arranged for the discharge home?

14. What Are the Placement Options? What Do You Think? Someone else’s PICU Transitional Care Unit Specialist respiratory ward General paediatric ward in DGH Designated centres Peripatetic expert teams.

15. On the Road to Discharge.... Stumbling blocks Hurdles Brick walls -Carers, funding -Changes to family, housing - Parental refusal, -Unstable medical condition

16. 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

17. 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

18. 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?

19. 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

20. WITH ACKNOWLEDGEMENT TO Dr Jane Noyes

21. The day you get home is the day that the journey really begins THE BIG 3 UNPREDICTABLES Carers Families Underlying condition

22. The Underlying Condition Ventilated children, as they grow and develop, have lives that unfold slowly unpredictably individually

23. 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?

24. Is it worth it? - costs ANNUAL COSTS: 24 home care package£180,000 Transitional care unit£258,420 PICU£500,000

25. Is it worth it? - outcomes No. of children

26. 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 2004;89:251-5

27. 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?

28. 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:

29. Conflicts in Difficult Decision Making The parents The patient The wider family The doctors – all of them The other professionals The communities The lawyers Ethics Secular morals Religious beliefs The law The GMC The playersThe Rules For every patient there is the right thing to do For 2 patients with the same problem there are 2 different ways of doing the right thing The game A game of two rights A game of two wrongs

30. Home ventilation can be good for you Future 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