Transcript Withholding or Withdrawing Life Sustaining Treatment in

Withholding or Withdrawing
Life Sustaining Treatment
in Children
October 4th 2007
“(The purpose of medicine is) to do away with
the sufferings of the sick to
lessen the violence of disease &
to refuse to treat those who are overmastered
by their disease.”
Hippocrates
www.rcpch.ac.uk/doc.aspx?id_Resource=2002
“The framework is not a prescriptive formula…..
But an attempt to guide management in individual cases
with the fundamental aim to consider and serve
The best interests of the child”
RCPCH 2004
14 year old girl with myoclonic form of epilepsy
Cognitively competent
Treatment options discussed with adolescent and family
Advantages and Disadvantages of each discussed
Most effective treatment sodium valproate
Parents wish trial of sodium valproate
Adolescent does not wish this on side effect risk and requests one of
the other treatment options instead. Realises that risk of seizure control
is less and the implications of this.
18 month old boy
Diagnosed aged 7 weeks with SMA type 1
Had developed to smile, cry, move limbs
By 10 months age - IPPV via ETT, PEG fed
Dependent fully including for clear all secretions
18 months – irregular following with eyes but cannot open eyes fully
Probable recognise carers + derive pleasure from them
Some pleasure from particular toy
Hears – presume with pleasure
Feels gentle strokes to back of hand
Assumed to have age appropriate cognition
Underlying Principle?
Remains
“The Best Interests of the Child”
Ethical decisions:
“…must be made by the doctors concerned.
Judges are neither qualified…required...nor entitled
to make ethical judgements or decisions.”
In this case:
10 professional witnesses + 4 expert witnesses agree
Best interests to withdraw active treatment.
Refused to make order to discontinue ventilation BUT
Lawful that procedures beyond this need not be given!
Why?
In this case:
10 professional witnesses + 4 expert witnesses agree
Best interests to withdraw active treatment.
Refused to make order to discontinue ventilation BUT
Lawful that procedures beyond this need not be given!
Why?
Presumption of cognitive normality
thus judge’s CURRENT opinion
best interests of THIS child is to maintain ventilation
RCPCH – 2004
5 scenarios where consider withhold / withdraw care:-
•
“Brain Death”
•
Permanent Vegetative State
•
The “No Chance” Situation
•
The “No Purpose” Situation
•
The “Unbearable” Situation
Ethics Advisory Committee
“ Withholding and withdrawal
of life sustaining treatment
are equivalent.”
“ Withholding and withdrawal
of life sustaining treatment
are equivalent.”
ie: no legal distinction
Acknowledged by Justice Holman
2006
Ethical Framework -
No single framework but:3 Fundamental Principles
apply
Ethical Framework
1)
Duty of Care – in partnership with those with
parental responsibility (PR)
Generally (not always) favours life
Comfort and prevent pain/suffering
Ascertain wishes child + carer
Serves child’s best interests
Ethical Framework
2)
Legal Duty -
Bound by legal framework
often inconsistent – precedent (UK)
Children Act
welfare of child paramount
regard to wishes of child
mature & informed, can refuse
parental responsibility
European Court of Human Rights
Bolam test!
Ethical Framework
3)
Child’s Rights –UNCRC (1989)
lays out principles for treating children
Not specifically applicable to UK court
right to
highest standards of health
& to
& to
& to
treatment
rehab (subject to resources)
info. In media of their choice
& to
their views being given due weight
Withdrawing / Withholding Care
Make distinction between:-
Euthanasia
Murder
Manslaughter
From the double effect of palliative procedures
Other legal considerations:Parental Responsibility
Views of the Child – competence
Mental Capacity (Act applies to over 16’s)
Parental Responsibility
Those with PR can consent (only needs 1 with PR to consent)
Mother (+ biological father if married)
(+ unmarried biological father if
contact order,
residence order,
or PR agreement
Adoptive parents
Guardian (with CO or RO)
Holder of EPO
Local Authority (Care order)
The Court
Lose PR via court, children being adopted,
Views of the Child (Competence)
Competence implies:•
•
•
•
•
Able to express choice between alternatives
Understands risks and benefits of alternative choices
Demonstrates rational, logical reasoning
The choice is “reasonable”
Choice is made without coercion
“moral & intellectual maturity of the 14 yr. old
approaches that of the adult”
Justice Douglas 1972
Nb: Gillick
“Given that most adolescents have the capacity necessary
to make competent health care decisions,
the ethical physician should respect this
and allow the competent adolescent
the right to exercise autonomy.”
Doig & Burgess 2000 (CMAJ)
Making Decisions
ALWAYS ACT WITH BEST INTERESTS OF CHILD AT HEART OF DECISIONS
Involve all the health care team(s) - openness
Base decisions on knowledge
Share information with child and family
Useful to outline / document benefits and burdens of treatment
Second opinion if necessary – not a legal requirement
Advise seek legal advice (“Trust” lawyer)
The 5 circumstances for withhold/withdraw (see lawyer if not)
Remain flexible to changes in circumstances
Each case is individual and unique
Legal advice if:
dispute between those with PR
dispute between those with PR and clinicians
dispute in the clinical team
Novel or repercussive elements
Resolving differences of opinion
Analyse where this originates
Seek input of others if required – expert external if necessary
Family may prefer to seek own second opinion (independent)
Family at liberty to change clinician if necessary
If clinicians and family/child cannot agree –
Courts should be consulted
CAFCASS may offer advice
Conclusions
Central are the “Best interests” of the child
Complex and ultimately unique to each individual case
“the current case law and statutes do not give any clear
guidance to resolve the problem. They tell you the
principles to apply but not how these principles apply to
your case.”
cited by Elias-Jones and Samanta 2005
Bolam principle (hence the importance of the RCPCH framework)
Where parents and doctors cannot agree on a course of treatment
for a child who lacks the capacity to decide for him(her)self, it is
the duty of the court to make an independent and objective
decision.
The test to be applied is the best interests of the patient.
Wyatt vs. Portsmouth Hospital NHST