WITHHOLDING AND WITHDRAWING LIFE-SUSTAINING TREATMENT FROM ADULTS WHO

LACK CAPACITY:

PILOT STUDY RESULTS

Professor Lindy WillmottAssociate Professor Ben White

Professor Colleen CartwrightProfessor Malcolm Parker

Professor Gail Williams

EMPIRICAL RESEARCH

ARC Linkage Project:

‘Withholding and withdrawing Life-sustaining treatment from Adults who Lack capacity: The Role of Law in Medical Practice’

Seeking to find out about doctors’ knowledge of the law, and the role law plays in medical practice at the end of life

Survey of doctors in Qld, NSW and Victoria

DEVELOPING SURVEY

Legal research and analysis

Focus groups in Qld, NSW and Victoria

Develop survey instrument

Pre-pilot

Pilot

PILOT SAMPLE Eight specialties

Emergency, geriatric, intensive, palliative, oncology, renal, respiratory and general medicine

12 specialists per category in each of Qld, NSW and VictoriaException – palliative care physicians where

5 specialists per state were approached

Total n = 259 specialists [8 surveys = return to sender]

PILOT RESPONSE

67 surveys returned44 returned from first mail-out17 returned from first follow-up6 returned from second follow-up

Overall response rate of 26%

PILOT RESPONSE Self-Reported Specialty

Emergency Medicine 6General medicine 2Geriatric Medicine 13Intensive Medicine 8Oncology 3Palliative Medicine 10Renal Medicine 11Respiratory Medicine 9Other 3Total 65

PILOT RESPONSE Response by States

Qld = 26NSW = 17Vic = 24

Response by genderMale = 42Female = 24

Mean age = 52

PILOT DESIGN 13 pages long

6 sectionsSection A: Your perspectives on the lawSection B: Education and training on the lawSection C: Your knowledge of [State] lawSection D: Your practice and the law in

[State]Section E: Your experience of the law in

[State]Section F: About youPlus free text comments at end

SECTION C:YOUR KNOWLEDGE OF LAW

First question6 statements

True/false/I don’t know responses

Second questionBrief scenario

Asked a specific question about the scenario Range of response options including ‘I don’t

know’

SECTION C:YOUR KNOWLEDGE OF LAW Mean correct response overall = 2.76

(out of possible score of 6)

Correct response by StateQld = 2.46NSW = 3.29Vic = 2.71

Correct response by ageNo significant difference

SECTION C:YOUR KNOWLEDGE OF LAW Correct response by perceived

knowledgeParticipants have reasonably good insight

into their level of knowledge

Effect of CPD training on law on WWLSTReceive training: mean = 3No training: mean = 2.5

‘It is not important for me to know the law’Strongly agree: mean (knowledge) = 2Strongly disagree: mean (knowledge) = 3

SECTION C:YOUR KNOWLEDGE OF LAW Correct response by specialty

Emergency Medicine 2.67General medicine 2.00Geriatric Medicine 3.08Intensive Medicine 2.88Oncology 3.67Palliative Medicine 3.20Renal Medicine 2.64Respiratory Medicine 2.44Other 2.33

SECTION D:YOUR PRACTICE AND THE LAW Which of listed definitions best reflects

your understanding of futile treatment: n (N=65) %

Futile if has 0% chance 9 14%

Futile if cannot achieve acceptable quality of life

2 3%

Futile if either <1% chance success or no acceptable quality of life

30 46%

Futile if burdens outweigh benefit of treatment

18 28%

Futile if it will not benefit patient attaining goal

6 9%

SECTION D:YOUR PRACTICE AND THE LAW Other definitions provided

“The treatment is unlikely to lead to a reasonable outcome in a reasonable period of time given the expenditure of reasonable resources.”

General (but not universal) view that assessment should be from the patient (or family’s) perspective, not doctor’s

‘Futility’ not particularly helpful in clinical setting

SECTION D:YOUR PRACTICE AND THE LAW

“The last 6-12 months of life for most elderly people with chronic and irreversible medical conditions, involve multiple long hospital admissions (ICU) and “futile” extensive investigations and treatment. Most of this is done, mainly to protect the medical professional from complaints from families and legal fraternity. My pet dog received more humane treatment and death with dignity than most of my elderly patients.”

FINAL SECTION:COMMENTS - LAW(YERS)

Concerns about how advance directives work in medical practice

Complexity and confusing nature of the law

Time-consuming if involve tribunal or public officials

Doctors need training in the law

FINAL SECTION:COMMENTS - LAW(YERS)

“If you act in the patient’s interest I didn’t feel that the “law” got in the way (sometimes lawyers did!)”

“Current legal environment is such that it is far easier to treat than not (except where there is an AHD). Contributor to relentless and unsustainable health care costs.”

FINAL SECTION:COMMENTS - MEDICAL PRACTICES Law doesn’t generally impinge on

medical practice if good communication Doctors need training in guiding

patients and carers through ‘end of life journey’

Some concerns about nature of medical practice at end of life

“Our medical and political culture positively encourages doctors to play God, and to normalise dangerously paternalistic behaviour.”

LESSONS LEARNT FROM PILOT Trends regarding law and EOL medical

practiceLaw has a role to play in the practice of

medicineMany would like to know more about the

lawSome significant knowledge gapsGenerally, insight into knowledge levels

Difficult to get specialists to respond to surveys!Removed ‘general medicine’ from sampleSignificantly reduced the size of the surveyProfessionally formattedDeveloped a targeted recruitment strategy

SURVEYS: QLD, NSW AND VIC

ACKNOWLEDGMENTS Australian Research Council

Partner organisations Queensland Civil and Administrative Tribunal Office of the Adult Guardian (Qld) Office of the Public Advocate (Qld) New South Wales Guardianship Tribunal New South Wales Trustee and Guardian (The

Public Guardian) Victorian Civil and Administrative Tribunal Office of the Public Advocate (Vic)