Paediatric Home Ventilation

Discharge planning

Colin Wallis

Respiratory Unit

Great Ormond Street Hospital

.

• 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?

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

0

50

100

150

200

250

1990(1) 1994 1995 1997(2) 2000

1. Robinson, Arch Dis Child. 1990;65:1235-62. Jardine, Wallis, BMJ. 1999;18:295-9

Numbers of Long-term Ventilated Children - UK

0

20

40

60

80

100

CCHS Spinal injury NMD CLDP OSA

No

. o

f ch

ild

ren

1997

2000

Diagnosis: • Central control: - CCHS, post infective, metabolic,

• High spinal injury

• Neuromuscular - myopathy, DMD, SMA

• Chronic lung disease - hypoplasia, BPD, ILD

• Obstructed Airways - craniofacial, malacia

Who Can Go Home?

• Stable airway

• Oxygen requirements <40%

• 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

Where are the LTV children?

84%

PICU

NICU

Step Down Unit

General Ward

Spinal Unit

Community

At Homen = 241

• 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?

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

Is Discharging a 24 hr Ventilator Dependent Child Safe?

SAFETY vs SUCCESS

Attitudes to risk:Professionals vs parents vs child/adolescent

• 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?

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

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

. .

.

On the Road to Discharge....

• Stumbling blocks

• Hurdles

• Brick walls

-Carers, funding

-Changes to family, housing

- Parental refusal,

-Unstable medical condition

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

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

• 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?

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

WITH ACKNOWLEDGEMENT TO Dr Jane Noyes

The day you get home is the day that the journey really begins

THE BIG 3 UNPREDICTABLES

• Carers

• Families

• Underlying condition

The Underlying Condition

Ventilated children,as they grow

and develop, have lives

that unfold

slowly

unpredictably

individually

• 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?

Is it worth it? - costs

ANNUAL COSTS:

24 home care package £180,000

Transitional care unit £258,420

PICU £500,000

Is it worth it? - outcomes

0

20

40

60

80

100

120not of school age

nursery

special needs nursery

mainstream school

special needs school

home tutor

hospital school

not completed

No. of children

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

Is it always worth it?

How did we get

into this mess?What are we doing

here?

What is themeaningof life?

Who did a trache on this child?

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:

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 players The 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

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