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Clinical Ethics. Prepared by Peter Saul ICU John Hunter Hospital 13 th October 2006. Medicine is a contact sport…. Medicine is a contact sport…. People get hurt. A little history. JHH Clinical Ethics Committee Founded 1993 Survey 1995 ( J Qual Clin Prac 1998) CUEHL 1996

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clinical ethics

Clinical Ethics

Prepared by Peter Saul


John Hunter Hospital

13th October 2006

a little history
A little history..
  • JHH Clinical Ethics Committee
    • Founded 1993
    • Survey 1995 (J Qual Clin Prac 1998)
    • CUEHL 1996
    • Became Area (HACEC) 2000
    • ACHS commendation 2001
    • Consultation service published 2004 (MJA 2004;181:204-206)
macro and micro
Macro and micro
  • Macro
    • Policy
    • Institutional change
    • Cultural change
  • Micro
    • The pointy end
    • Support for value-laden decisions at the bedside
time to have a go
Time to have a go
  • The Wandering Man
    • Elderly man found wandering around a park
    • Investigations showed brain tumour (inoperable, incurable)
    • Immigrant, no family or friends in Australia
    • CEC contacted six weeks after admission
    • Still wandering, vomiting blood
  • What can we do without consent?
    • Hide drugs in his food?
    • Do an endoscopy?
    • Restrain him?
    • Write a no-CPR order?
time to have a go 2
Time to have a go 2
  • Young woman with severe Crohn’s disease
  • Unable to give up smoking
  • New (expensive) drug available – evidence suggests drug much less effective if patients smoke.
  • Should the drug be withheld?
ethics consultation
Ethics consultation
  • Formal and informal
  • Knowledge deficit or dilemma (values)
  • Expertise and accountability

“Can you tell me, Socrates - is virtue something that can be taught? Or does it come by practice? Or is it neither teaching nor practice that gives it to a man, but natural aptitude, or something else?”


Protagoras and Meno

macro stuff
Macro stuff
  • “Patient autonomy”
    • A short and undistinguished career
    • An issue of culture
  • Can patients become meaningfully involved in decisions about their care?
  • A worthy subject for experimentation
a few facts aihw 2002
A few facts (AIHW 2002)
  • Life is still getting longer
    • But slower
    • At high cost
  • All the gain is at the end
    • Last 5-9yrs with disability
    • Extremes of age now common
  • > 90% of Australians now get to be old
  • Chronic illness now common

80 deaths a month

90% have no attempt at resuscitation

80% have no involvement in their own EOL decisions


80% die after a decision to withdraw or withhold treatment

Almost all these decisions are made by surrogates

place of death
Place of death
  • US data - 20% in ICU (60% in Miami)
    • Crit Care Med 2004;32:638-643
  • UK data - institutions 80% (hospitals 66.5%)
    • BMJ 2003;326:30-34
  • Bankstown data - > 60% have multiple hospital admissions during last year of life, av bed days 25
    • Age & Ageing 2004

Principles of a good death

  • To know when death is coming, and to understand what can be expected
  • To be able to retain control of what happens
  • To be afforded dignity and privacy
  • To have control over pain relief and other symptoms
  • To have choice and control over where death occurs (at home or elsewhere)
  • To have access to information and expertise of whatever kind is necessary
  • To have access to any spiritual or emotional support required
  • To have access to hospice care in any location
  • To have control over who is present and who shares the end
  • To be able to issue advance directives which ensure wishes are respected
  • To have time to say goodbye, and control over other aspects of timing
  • To be able to leave when it is time to go, and not to have life prolonged pointlessly
  • Age Concern, London 1999
advance care planning in residential care
Advance care planning in residential care
  • Questionnaire study of 4625 residents of nursing homes and hostels in NSW
  • <0.2% had a written advance directive
  • 1% had a no-CPR order
  • decision making largely informal

Aust NZ J Med 2000;30:339-343


“There is always an easy solution to every human problem - neat, plausible, and wrong”

H L Mencken 1917

advance directives
Advance directives
  • Level 1 evidence that you can get people to write them
    • J Crit Care 2004;19:1-8
  • Level 1 evidence they don’t work
    • Arch Int Med 2004;164:1501-1506
end of life decision making in nsw
End of life decision making in NSW
  • No legislation (unlike our neighbours)
  • A complex (and disputed) intersection of guidelines and perceptions about what the common law might say
an outline of the rpc program
An outline of the RPC Program
  • Born in LaCrosse Wisconsin in the 90’s
  • Adopted and adapted by Austin Health in Victoria in 2002 - trialed 02-03
  • Extended to acute care pilot hospitals in all states 2004-2006
  • Extended to residential aged care 2005
  • Rural pilot and GP’s 2006
the essence of rpc
The essence of RPC
  • Starts at the top
  • Changes hospital systems
  • Trains facilitators
  • Focuses on families/carers, not just patients
  • Aims to provoke documented discussions (not just AD’s)
  • Educates absolutely everybody
acp pre rcp program
ACP pre RCP Program
  • Only 1% of in-patient notes included any reference to a plan or patient preferences (4 states)
  • Legislation not influential
  • 0.2% of notes in nursing homes in Hunter Region of NSW contained a plan
surrogates pre rcp program
Surrogates pre RCP Program
  • No recognition of guardianship provisions in acute care (on admission or subsequently).
  • < 5% of residents in nursing homes in Hunter had a recorded guardian
  • “Program logic map”
  • Outsourced to a group at LaTrobe
  • Looked at several tiers, quantitative and qualitative
  • Tries to establish links between changes made and outcomes
outcomes at jhh
Outcomes at JHH
  • Changes to hospital administration
  • Changes to processes of care in the pilot wards
  • 120 trained staff
  • High level of confidence in trained staff
  • Incorporated into routines of care
  • Extended into clinics
early results at jhh
Early results at JHH
  • 2 plans and no identified proxies (PR) in 200 patients pre-implementation
  • 50/200 identified preferred proxy and 30/200 recorded preferences in evaluation period
  • A smorgasbord of documents produced
  • Impact evaluated Jan-Apr 2006
outcomes at jhh1
Outcomes at JHH
  • (1 in 50 told us to go away)
  • 15 in-patients/week introduced to RPC (4 wards) and lots of outpatients
  • 8 ask for follow-up
  • 3 identify or appoint a proxy
  • 2 request a no-CPR order
  • 1 writes a plan (may include an advance care directive). Takes about 2hrs.
  • All plans followed so far
guidelines for end of life care and decision making
Guidelines for end of life care and decision making
  • A “shared decision”
  • Based on “consensus”
  • Ethical principle
    • In the absence of a competent adult patient, nobody has the trump card

Patient wishes




Patient wishes



No trump card

advance care planning in nsw
Advance care planning in NSW
  • Identify who will make decisions for you
  • If not OK, appoint somebody else
  • Talk to them
  • Make sure everybody knows what you’ve said
  • Write something down and keep it with you