A critical analysis based on case studies in
Paediatric Intensive Care Unit, exploring
the controversial issues surrounding the
initiation of long term ventilation in
children with chronic disease.
Hannah Baird
Supervisor: Dr P. M. Fortune
Background
 LTV is defined as a medically stable child requiring
mechanical ventilation for over three months
 Increase in the number of children receiving LTV in the
UK, especially the number in the community
No of children long
term ventilated in
the UK
No ventilated at
home
1993 (1)
24
9
1996 (1)
136
93
2000 (2)
241
-
2008 (2)
933*
844
*Despite being such a large increase only, 9.5% of this number are ventilated via a tracheostomy
for 24h a day (2).
Who needs LTV?
 Neuromuscular disorders are the most common conditions
requiring LTV, closely followed by chronic respiratory
conditions such as congenital hyperventilation syndrome.
England (1)
Congenital Hypoventilation
syndrome
Neuromuscular disease
18%
13%
Spinal cord injury
Craniofacial anomalies
4%
7%
Non-cardiac congenital disease
12%
46%
Broncho-pulmonary dysplasia
Other
 Simple surgical interventions or infections can cause the
lengthy PICU admissions.
However....
 Not all of the 933 children on LTV in the UK will
require life–long ventilation, as their condition may
improve.
 More research is needed into the outcomes of LTV and
the transition into adult care for some CNS and
neuromuscular patients.
Aims
 To discuss, prompted by case studies the issues raised
by initiating a child on LTV.
 This was done in terms of the resource, social and
ethical implications.
 To understand when a situation can be defined as
futile, and how this judgement can be made?
 To determine who the primary decision maker was; the
doctor or the parent?
Case study: Sophie*
 One and a half year old girl, been in PICU since birth
 Complex heart condition; including pulmonary atresia,
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VSD and a dilated right aortic arch
Reduced life expectancy
Ventilator dependent 24hr/day due to bronchomalacia
She has suffered 2 cardiac arrests, episodes of bacteraemia,
endocarditis and several thrombus formations
Awaiting major cardiac surgery
The surgery is very expensive, high risk of mortality and
may still leave her dependant on a ventilator.
Sophie is your patient, what would you do when she
presented, would you have started LTV?
Mind Map of
the issues
surrounding
LTV. (3,4,)
The Royal College of Paediatrics and Child Health outlined five
situations that can be regarded as futile:
5) The “Unbearable” situation – the
child and/or their family feel that
any further treatment when the
illness is progressive and
irreversible, is of little benefit(5).
Summary
LTV is expensive and raises many resource, social and ethical
issues:
 Is it just to spend so much money of one child at the
possible expense of another?
 UN convention of the rights of the child declares that every
child has a ‘right to life and health’.
 When do we decide enough is enough? How do we define
futility and who makes this call?
 What does best interest mean? How is this decision made?
As the numbers and cost increase, these questions need to
become increasingly more asked.
Just because we can, doesn’t
always mean we should.
“Physicians are mandated to refuse to treat
those who are over-mastered by their
diseases, realising in such cases medicine is
powerless.” Hippocrates (6)
Unfortunately Sophie* passed away two days after the
major cardiac surgery she had waited so long for.
Questions?
References
 1. O’Toole. E.J, Wallis. J.Y.P. (1999). Current status of long term
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ventilation of children in the United Kingdom: a questionnaire survey.
BMJ. 318.p295-318
2. Wallis.C, Payton.J.Y, Beaton.S, Jardine.E. (2010) Children on long
term ventilatory support; 10 years of progress. Arch Dis Child.
doi:10.1136/adc.2010.192864
3. Paediatric Intensive Care Audit Network. Information of the length
of stay of long term ventilated patients 2005-2009. Information
received via direct request.
4. Noyes. J, Lewis. M. (2005) From Hospital to Home. Barnardo’s
publishers. Essex. pp 52, 69
5. RCPCH guidelines Withdrawing and Withholding Life Sustaining
Treatment. The Royal College of Paediatrics and Child Health.
Withholding and Withdrawing Life Sustaining Treatment in Children:
A Framework for Practice, 2nd edn. London: RCPCH, 2004.
6. Wellesley. H, Jenkins. I.A (2009). Withholding and Withdrawing life
sustaining treatment in children. Paediatric Anaesthesia. 19. pp972978.
General references:
 Kamm.M, Burger.R. Rimensberger.P. (2001). Survey of children supported by long
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term mechanical ventilation in Switzerland. Swiss medical weekly. 131. P261-266
Edwards. E. A, Hsiao. K, Nixon .G.M. (2005) Paediatric home ventilator support:
The Auckland experience. Paediatric Child Health. 41. Pp652-658
Fraser. J (1997) Survey of occupancy of Paediatric Intensive care units by children
who are dependent on ventilators. BMJ. 315 p347-348
Unicef: convention on the rights of the child. Available at
www.unicef.org/crc/index_using.html . Accessed [10/06/2010]
Beauchamp, T.L. Childress, James.F. (2009) .Principles of biomedical ethics. Sixth
ed. Oxford University Press. New York. pp99-361
Bach .J.R, Vega. J, Majors. J ,Friedman A. (2003). Spinal Muscular Atrophy Type 1
Quality of Life. American Journal of Physical Medicine and Rehabilitation. 82.
pp137-142
Tibballs, J. (2007) Legal basis for ethical withholding and withdrawing lifesustaining medical treatment from infants and children. Journal of Paediatrics and
Child Health. 43 p230-236
Nuffield council on Bioethics. Critical care decisions in fetal and neonatal
medicine: ethical issues. Nuffield council on Bioethics. 2006
Garros.D, Rosychuk.R, Cox.P. (2003). Circumstances surrounding end of life issues
in paediatric Intensive Care. American Journal of Paediatrics. 112. P371-379
Sharman.M.D, Kathleen.L. (2005). What influences parents’ decisions to limit or
withdraw life support? Paediatric critical care medicine. 6 (5) p513-518