Is it time to limit or witholdlife-saving care?

Louis Reynolds

With input from Jane Booth, Carla Brown, Minette Coetzee

Research group on clinical decision-making around children who die

School of Child & Adolescent Health

UCT

Background meeting the burden of dying at RXH

• Pre-AIDS: most deaths in Oncology Unit & ICUs

• Post-AIDS: burden increases, shifts towards wards & OPD

• ICU as resource faces increasing demands & constraints

• Intensivists frequently called on to make end-of-life decisions in emergency situations

• Ethics forums: from 'DNR' to 'active' palliative care

• Intervention Levels accepted as framework for practice

Intervention levels in 2005*

• IL 3: Comfort care and– Everything necessary to preserve life & restore health– The default level

• IL 2: Comfort care and– Continued investigation and treatment of disease– No CPR or IPPV

• IL 1: Comfort care– No painful interventions except for relief of greater pain or discomfort

• The fundamental goal is to act in the child’s best interests

* M Klein 2005

Intervention levels in 2005*

• Who assigns the intervention level?– Consensus decision shared by nursing & medical team– NEVER an individual

• What is the status of an IL assignment?– It has medico-legal standing and is binding– It must be justified with reasons in the patient's notes

• What is the procedure for issuing the order?– The doctor issues the order on the blue board and signs legibly– The sister in charge of the ward co-signs the blue board– The doctor writes the reasons for the order in the notes

• For how long is an IL order valid?– 1 week, unless otherwise specified– It lapses on discharge unless otherwise specified

* M Klein 2005

Problems in implementation

• Rationale not always clear to everyone concerned– Frequent handovers, lack of continuity– Nagging doubts not expressed– Lack of consensus becomes hidden– Moral ambivalence in team

• Not meeting the unique needs of the particular child and family– ‘what does “comfort care” mean for this child?’– do her parents understand and accept?

• Lack of training in palliative care & pain control

Staff members experience discomfort and pain

Some children still suffered unacceptably

Case presentation

Baby of VM, C/S; BW 2,14– One of a pair of twins

– Open L-S meningomyelocele

– Stridor from birth

– Day 2: Repair of back lesion

– Day 6 CT: • Chiari type 2

• Hydrocephalus

– Stridor persists trachy D10

– Day 14: sepsis

– Day 17: out of ICU

The duty of care

… All members of the health care team, in partnership with parents, have a duty to act in the best interests of the child.

This includes sustaining life and restoring health to an acceptable standard.

However there are circumstances in which treatments that merely sustain ‘life’ neither restore health nor confer other benefit and hence are no longer in the child’s best interests.

There are five situations where it may be ethical and legal to consider withholding or withdrawing life sustaining medical treatment …

Royal College of Paediatrics & Child Health, 2004

The duty of care

• The ‘brain dead’ child• Strict criteria, 2 practitioners, accepted medical standards

• The ‘permanent vegetative’ state• No interaction or relation with outside world

• The ‘no chance’ situation• No hope of survival, treatment only prolongs death

• The ‘no purpose’ situation• Survival possible but only with ‘unbearable’ impairment

• The ‘unbearable’ situation• Irreversible disease, further treatment unbearable despite possible

benefitRoyal College of Paediatrics & Child Health, 2004

Goals of hospital care

• Admitting a child to hospital is an invasive intervention

– We should not do it without clear & explicit ideas of what the goals are& the commitment to carry them outwith the minimum harm

– The default, assumed, usually unspoken umbrella goal for paediatric admissions is to preserve life & restore health

… we don't usually document itbecause it’s so obvious

This works reasonably well for most patients

Goals of hospital care

But lack of explicit goals may lead to loss of direction

why goals become unclear

– clinical issues unclear from start

– lack of continuity of care

– no improvement, complications

– prolonged stay or recurrent admission

– delayed or cancelled operations

– child’s context sidelined as 'social problems’

– when prognosis is in doubt

• 'where are we going with this child?'

Goals & Intervention Levels

certain death

certain cure

uncertainty

Assigning IL 1 or 2 is one of the biggest decisions we make

It deserves mental effort and, usually, a lot of agony

Set clear goals

review & change

Usually IL 2

Goal: 'a good death’

IL 1

Goal: preserve life & restore health

IL 3

Control of pain & discomfort from the start

Goals & Intervention Levels

• ILs give us a useful tool particularly when – there is uncertainty about the prognosis– the primary goal shifts from preserving life & restoring

health towards palliation

… but only if our goals and uncertainties are clear and explicit to ourselves and others

& we tailor care to the needs of the patient & family

Applying Intervention Levels

• a team approach: all staff categories, parents, families …

– get all the facts

– get other opinions

– consider therapeutic options

– from start give parents (& child) control & responsibility

– aim for consensus

– communicate, communicate, communicate …• Good, clear notes, including all discussions• Comprehensive handovers• Encourage expression of differing views, no matter who has them

– don’t rush, allow adequate time – but don’t waste time

Baby of VM [continued]

• Mother has schizophrenia, 'incapable of childcare’ [psychiatric opinion]

• Gran takes care of her plus twin’s sibling, as well as another daughter with psychiatric problems

• Crowded home• Gran is quite prepared to take responsibility

CURRENT OVERALL GOAL: home tracheostomy care– Daily goals & plans aim towards this goal– Intervention Level 2: tailored to meet child's needs

Baby of VM [continued]

Rationale: 'no purpose' situation

• Current and future disablements will make life unbearable in context

– Open meningomyelocele, high risk of meningitis [& UTIs]

– Impaired CNS function, Chiari type 2 & hydrocephalus

– Context:

• Mother psychiatrically incapable of caring for child [psychiatric opinion]

• Twin sibling will have conflicting needs

• Tacheostomy care will add to burden and complexity of care

Baby of VM [continued]

No CPR

Specific orders with respect to the following:

Not for ICU admission.

Wean to room air, review in light of future developments

Continue tracheostomy care. Train grandmother

No excess fluid losses; hydration maintained with feeds.

Completed course. Review in light of future course.

No blood products.

Renal function, FBC & markers.

Poor swallowing, continue continuous N-G feeds.

Already discussed with grandmother, focussing on positive aspects. SW: outside social agency to visit & assess conditions and reason for lack of visits

Paracetamol regularly to control pain.

ICU admission

Oxygen

Airway

Hydration

Antibiotics

Blood products

Blood tests

Nutrition

Psychosocial

Pain & discomfort

Baby of VM [continued]

• Discussed with:– Grandmother: discussion incomplete, has focussed on positive

aspects– Members of nursing staff as a group with junior medical staff– Social worker

Unanimous agreement among staff, including neurosurgical team

• Details of discussions recorded in medical & nursing notes

Baby VM at home with grandmother, mother & twin sibling

She died at home 2 months later

Finally…

Pursue palliation goals actively

• Be clear about the goal when limiting care

• Tailor your plan in the child’s best interests

• Be prepared for rigorous thought and hard

work

• Get everyone on board

• Avoid paternalism

• Don’t rush but don’t waste time