WHEN CURE DOES NOT CURE

DR SIMON ATTARD MONTALTO

Ethical issues in Neonatology & Paediatrics

§ most childhood illness is curable

§ 10% newborns need intensive care (400)

§ up to 10% will not survive

§ 8% due to complications of prematurity

§ <1% of older children do not survive

§ death from cancer, accidents

Introduction

§ ethical problems common

§ rarely simple answer

§ especially in children

§ impact on individual, family, society

§ ethical code of practice essential

When is care not cure?

Palliative care replaces curative care in:

§ with non-viability (e.g. prematurity)

§ inherent disease (e.g. genetic)

§ severity of illness

§ no response to curative therapy

§ no therapy available (to-date)

NB: Medical goalposts change

When to opt for care not cure?

Stopping curative therapy depends on:

§ medical grounds

§ curative options exhausted

§ patient ‘ready’

§ family prepardness/acceptance

§ acceptance of carers

Basic medical ethics

Respect Patient:

§ autonomy

§ competence

§ paternalism

§ confidentiality

Aim for:

§ beneficience

§ honesty

§ non conflict

§ realistic goals

Guide to medical decisions

Ethically acceptable decisions require:

§ omniscience            - all the facts

§ omnipercipience      - all points of view

§ disinterest               - no bias

§ dispassion               - no emotions

§ consistency             - reproducibility

Ethical problems in children

Life/death decisions especially difficult:

§ most children cannot grasp issues

§ cannot participate in decision process

§ depend on third parties

equal rights as adults

equal right to live & die with dignity

Other considerations

§ assessment of outcome (difficult)

§ quality of life (subjective)

§ realistic goals

§ reasonableness of continuing support

§ healthcare resources (rationing)

Children and dying

At all times

§ respect for individual

§ respect for family

§ respect for carers

§ respect for society/culture/creed

The dying process

Attention required for:

§ Physical needs (child/family)

§ Distress (child/family/carers)

§ Where to die?

§ With whom?

§ How?

Very difficult with sudden death

The dying process

Death as ‘acceptable’ as possible:

§ child dies once

§ major event for loved ones

§ strive to respect patients wishes

§ strive to respect family’s wishes

§ ‘humanise’ process

§ ensure ‘quality time’

Conclusion

For critically ill children:

§ Cure NOT at all costs

§ Care ABSOLUTELY at all costs

§ Acceptance of death very important

§ Discussion with family paramount

§ Allow ‘quality time’ with dying child

§ Death with dignity