Professor Lindy Willmott Associate Professor Ben White Professor Colleen Cartwright

1. Withholding and withdrawing Life-sustaining treatment from Adults who Lack capacity:pilot study results Professor Lindy Willmott Associate Professor Ben White Professor Colleen Cartwright Professor Malcolm Parker Professor Gail Williams

2. 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

3. Developing survey • Legal research and analysis • Focus groups in Qld, NSW and Victoria • Develop survey instrument • Pre-pilot • Pilot

4. Pilot sample • Eight specialties • Emergency, geriatric, intensive, palliative, oncology, renal, respiratory and general medicine • 12 specialists per category in each of Qld, NSW and Victoria • Exception – palliative care physicians where 5 specialists per state were approached • Total n = 259 specialists • [8 surveys = return to sender]

5. Pilot response • 67 surveys returned • 44 returned from first mail-out • 17 returned from first follow-up • 6 returned from second follow-up • Overall response rate of 26%

6. Pilot response

7. Pilot response • Response by States • Qld = 26 • NSW = 17 • Vic = 24 • Response by gender • Male = 42 • Female = 24 • Mean age = 52

8. Pilot design • 13 pages long • 6 sections • Section A: Your perspectives on the law • Section B: Education and training on the law • Section C: Your knowledge of [State] law • Section D: Your practice and the law in [State] • Section E: Your experience of the law in [State] • Section F: About you • Plus free text comments at end

9. Section C:Your knowledge of law • First question • 6 statements • True/false/I don’t know responses • Second question • Brief scenario • Asked a specific question about the scenario • Range of response options including ‘I don’t know’

10. Section C:Your knowledge of law • Mean correct response overall = 2.76 (out of possible score of 6) • Correct response by State • Qld = 2.46 • NSW = 3.29 • Vic = 2.71 • Correct response by age • No significant difference

11. Section C:Your knowledge of law • Correct response by perceived knowledge • Participants have reasonably good insight into their level of knowledge • Effect of CPD training on law on WWLST • Receive training: mean = 3 • No training: mean = 2.5 • ‘It is not important for me to know the law’ • Strongly agree: mean (knowledge) = 2 • Strongly disagree: mean (knowledge) = 3

12. Section C:Your knowledge of law • Correct response by specialty

13. Section d:Your practice and the law • Which of listed definitions best reflects your understanding of futile treatment:

14. 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

15. 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.”

16. 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

17. 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.”

18. 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.”

19. Lessons learnt from pilot • Trends regarding law and EOL medical practice • Law has a role to play in the practice of medicine • Many would like to know more about the law • Some significant knowledge gaps • Generally, insight into knowledge levels • Difficult to get specialists to respond to surveys! • Removed ‘general medicine’ from sample • Significantly reduced the size of the survey • Professionally formatted • Developed a targeted recruitment strategy

20. Surveys: QLD, NSW and VIC

21. 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)