Withholding and withdrawing life-sustaining medical treatment from adults who lack capacity: The role of law in medical practice

Overview

Project status: In progress

Decisions to withhold and withdraw life-sustaining treatment are a necessary and legitimate part of medical practice. We estimate that over 30,000 adult deaths occur each year across New South Wales, Queensland and Victoria (and almost 40,000 deaths nationally) following a medical decision to withhold or withdraw life-sustaining treatment. Yet the extent to which these decisions are lawful is unknown.

This project aims to determine doctors' knowledge and practice in relation to the law that governs decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. It will identify training and educational needs, and find ways to improve the law by suggesting reforms. In doing so, the project aims to produce better outcomes for patients and their family and friends, to enhance clinical practice through promoting lawful decision-making, and to reduce health expenditure incurred because of defensive medicine and legal compliance costs.

Read details

Grantor

Australian Research Council - Linkage Grant 

Amount
  • $287,000 - Australian Research Council
  • $90,000 - Partner Organisations
Research team
QUT External collaborators
  • Colleen Cartwright, Foundation Professor of Aged Services and Director of the Aged Services Learning and Research Centre (ASLaRC), Southern Cross University.
  • Malcolm Parker, Professor of Medical Ethics, School of Medicine, The University of Queensland
  • Gail Williams, Head of the Epidemiology and Biostatistics Unit, School of Population Health, University of Queensland
Organisational unit
Lead unit Health Law Research Centre Other units

Contact

For more information contact Penny Neller.

 

Details

This project has two central research questions: When decisions are being made to withhold or withdraw life-sustaining treatment from adults who lack capacity, do doctors know and consider the law? If not, what are the reasons for this?

To address these questions, this project will examine and critically evaluate, in Queensland, Victoria and New South Wales:

  • the current state of the law
  • doctors' knowledge of their legal duties, and reasons for any inadequacies
  • the role that law plays in this area of medical practice.

These findings will then be used to:

  • identify strategies to enhance doctors' knowledge and use of the law in clinical practice
  • propose reforms to enhance the clarity of the law.

This project will employ:

  • legal research and analysis, including an explicit comparative element looking at law and practice across three jurisdictions
  • theoretical perspectives on medical education
  • quantitative and qualitative empirical research methods.

Chief investigators

Professor Ben White

Co-Director Health Law Research Centre, Faculty of Law, Queensland University of Technology

Professor White has published extensively in the area of health law, with a particular focus on end of life decision-making and adult guardianship law. He teaches health law at undergraduate and postgraduate level, and supervises a number of PhD students in this area. Between 2005 and 2007, Professor White was appointed as the full-time Commissioner of the Queensland Law Reform Commission where he had the carriage of the Guardianship Review on behalf of the Commission. He subsequently contributed to this review as a part-time Commissioner between 2007 and 2010. Professor White is co-editor of Health Law in Australia, Thomson (2010) and is a member of Queensland Health's Clinical Ethics Committee.

Professor Lindy Willmott

Co-Director Health Law Research Centre, Faculty of Law, Queensland University of Technology

Professor Willmott teaches in the area of health and adult guardianship law, particularly end-of-life issues, and publishes extensively in this field. She has been part-time member of the Queensland Civil and Administrative Tribunal and is a member of the Queensland Health Clinical Ethics Committee. She was formerly both a full-time and part-time member of the Queensland Law Reform Commission from 1990 to 1994. Professor Willmott is the co-author of many text books in a range of areas including de facto relationships law, contract law and mortgages law. She is also a co-editor of Health Law in Australia, Thomson (2010).

Professor Colleen Cartwright

Foundation Professor of Aged Services and Director of the Aged Services Learning and Research Centre (ASLaRC), Southern Cross University.

Professor Cartwright has extensive teaching and research experience in ageing, ethics and medical decisions at the end of life, at national and international levels, including leading the Australian component of the EURELD international study with 6 European countries into medical decisions at the end of life. Her research contributed significantly to the development and implementation of the Queensland Powers of Attorney Act (1998) for which she designed the Advance Health Directive and Enduring Power of Attorney forms. She has published widely, with articles in major journals, many research reports and a number of book chapters. Professor Cartwright also provides consultancy on older people's issues to local, state and national government departments and agencies. Professor Cartwright undertakes research relevant to older people in rural and regional areas of Australia, as well as having national and international significance. ASLaRC's education focus incorporates professional development, undergraduate and postgraduate education and community forums.

Professor Malcolm Parker

Professor of Medical Ethics, School of Medicine, The University of Queensland

Professor Parker teaches medical ethics, law and professional practice in the School of Medicine and has worked in general medical practice for over thirty years. He has published nationally and internationally in philosophy of medicine, bioethics, medical ethics, health law, and medical education. His current research interests include evidence-based medicine, the legal standard of care, medical decision-making at the end of life, medical professionalism and assessment of attitudes and behaviour, methods in bioethics, regulation of complementary medicine, and the evolution of ethics and value.

Professor Gail Williams

Head of the Epidemiology and Biostatistics Unit, School of Population Health, University of Queensland

Professor Williams is an internationally recognised biostatistician, having received many prestigious awards, including the Wyeth Prize in statistics and the 2005 Kenneth Warren Prize (with colleagues) for the best Cochrane Collaboration article in 2004 for methodological quality and relevance to developing countries' health problems. Professor Williams has been involved in a number of multi-disciplinary international studies including the ARIVAC trial in the Philippines, a study of acute respiratory infections research in the Philippines, a study examining schistosomiasis control in China, and the Australian component of the EURELD international end-of-life study with 6 European countries.

Publications and output

Resources

These resources may be useful to doctors and other health professionals working in Queensland, New South Wales and Victoria:

Queensland

Victoria

New South Wales

Journal articles

  1. B White, L Willmott, C Cartwright and G Williams, What do emergency physicians think of law? (2012) 24(4) Emergency Medicine Australasia 344-356
  2. B White, L Willmott, C Cartwright and G Williams, Should law have a role in end-of-life care? (2012) 42(9) Internal Medicine Journal 966-967
  3. B White, L Willmott and S-N Then, Adults who lack capacity: Substituted decision-making in B White, F McDonald and L Willmott (eds), Health Law in Australia, Thomson (2010) pp149-207
  4. L Willmott, B White and S-N Then, Withholding and Withdrawal of Life-Sustaining Medical Treatment in B White, F McDonald and L Willmott (eds), Health Law in Australia, Thomson (2010) pp449-490
  5. B White, L Willmott, P Trowse, M Parker and C Cartwright, The Legal Role of Medical Professionals in Decisions to Withhold or Withdraw Life-sustaining Treatment: Part 1 (New South Wales) (2011) 18(3)Journal of Law and Medicine 498
  6. L Willmott, B White, M Parker and C Cartwright, The Legal Role of Medical Professionals in Decisions to Withhold or Withdraw Life-sustaining Treatment: Part 2 (Queensland) (2011) 18(3) Journal of Law and Medicine 523
  7. L Willmott, B White, M Parker and C Cartwright, The Legal Role of Medical Professionals in Decisions to Withhold or Withdraw Life-sustaining Treatment: Part 3 (Victoria) (2011) 18(4) Journal of Law and Medicine 773

Presentations

  • B White, L Willmott, C Cartwright, M Parker and G Williams, Withholding and withdrawing life-sustaining treatment from adults who lack capacity: law, medicine, ethics and practice Symposium at the 2nd World Congress on Adult Guardianship, October 2012, Melbourne
  • L Willmott, B White, C Cartwright, M Parker, G Williams, Does law matter? Compliance with the law by doctors at the end of life, paper presented to the Australasian Association of Bioethics and Health Law Conference, July 2010, Adelaide
  • B White, Public consultation and designing law reform, paper presented to the Australasian Law Reform Agencies Conference, October 2010, Brisbane
  • B White, L Willmott, C Cartwright, M Parker, G Williams, What do doctors think of law at the end of life?, paper presented at Faculty of Law, Otago University, New Zealand, February 2011.
  • L Willmott, Clinical Ethics Cafe: The case of Mrs Woo, paper presented at Health Ethics and Law Discussion Group, April 2011, Brisbane
  • ME Collerson, B White, L Willmott, C Cartwright, M Parker, G Williams, Adults lacking capacity: Treatment refusal and legal role of doctors, paper presented at Alzheimer's Australia 14th Annual Conference, May 2011, Brisbane
  • B White, L Willmott, C Cartwright, M Parker, Who can refuse life-sustaining treatment on behalf of an adult who lacks decision-making capacity? Legal, ethical and practical challenges arising from inconsistent powers of substitute decision-makers, paper presented to the Australasian Association of Bioethics and Health Law Conference, July 2011, Gold Coast
  • L Willmott, Inquest into the death of June Woo: A legal analysis, paper presented at Mackay Hospital Conference, October 2011, Daydream Island
  • L Willmott, B White, C Cartwright, M Parker, G Williams, Withholding and withdrawing life-sustaining treatment from adults who lack capacity: Pilot study results, paper presented to the Australasian Association of Bioethics and Health Law Conference, July 2012, Auckland
  • L Willmott, B White, C Cartwright, M Parker, G Williams, Withholding and withdrawing life-sustaining treatment from adults who lack capacity: what do doctors know of the law? And do they care?, paper presented to the Health Ethics and Law Discussion Group, September 2012, Brisbane

Other relevant references

  1. Lawrence, S., Willmott, L., Milligan, E., Winch, S., White, B.P., & Parker M. (2012) Autonomy versus futility. Barriers to good clinical practice in end-of-life care: a Queensland case. Medical Journal of Australia, 196(6), 404-405
  2. White, B. P., & Willmott, L. (2005). Rethinking Life-Sustaining Measures: Questions for Queensland. QUT, Brisbane, Qld.
  3. Willmott, L, White, B.P., & Mathews, B.P. (2010). Law autonomy and advance directives. Journal of Law and Medicine, 18, 366-389
  4. White, B.P., Willmott, L., & Allen, J. (2010) Withholding and withdrawing life-sustaining treatment: criminal responsibility for established medical practice? Journal of Law and Medicine, 17(5), 849-865.
  5. Willmott, L. (2010) Advance Directives and the Promotion of Autonomy: a Comparative Australian Statutory Analysis. Journal of Law and Medicine, (17), 556-581.
  6. Willmott, L. (2009) Advance Directives Refusing Treatment as an Expression of Autonomy: Do the Courts Practise What They Preach? Common Law World Review, 38(4), 295-341.
  7. Willmott, L. (2007) Advance directives to withhold life-sustaining medical treatment: eroding autonomy through statutory reform. Flinders Journal of Law Reform, 10(2), 287-314.
  8. Willmott, L., & White, B.P. (2006). A model for decision-making at the end-of-life : Queensland and beyond. Medicine and Law, 25(1), 201-217.
  9. Willmott, L., White, B. P., & Howard, M. T. (2006). Refusing advance refusals: advance directives and life-sustaining medical treatment. Melbourne University Law Review, 30(1), 211-243.
  10. Willmott, L., White, B. P., & Cooper, D. M. (2006). The Schiavo decision: emotional, but legally controversial? Bond Law Review, 18(1), 132-159.
  11. Willmott, L., & White, B. P. (2005). Charting a course through difficult legislative waters: tribunal decisions on life-sustaining measures. Journal of Law and Medicine, 12(4), 441-454.
  12. Willmott, L., White, B. P., & Cooper, D. M. (2005). Interveners or interferers: Intervention in decisions to withhold and withdraw life-sustaining medical treatment. The Sydney Law Review, 27(4), 597-621.
  13. White, B. P., & Willmott, L. (2004). Will you do as I ask? Compliance with instructions about health care in Queensland. Queensland University of Technology Law and Justice Journal, 4(1), 77-87.
  14. White, B. P., & Willmott, L. (2004). Lawful withdrawal: The video. (Unpublished)
  15. Parker, M. (2008). Patient competence and professional incompetence: disagreements in capacity assessments in one Australian jurisdiction, and educational implications. Journal of Law & Medicine, 16, 25-35.
  16. Parker, M., Cartwright, C., & Williams, G. (2008). Impact of specialty on attitudes of Australian medical practitioners to end-of-life decisions. Medical Journal of Australia, 188(8), 450-456.
  17. Parker, M., Stewart, C., Willmott, L, & Cartwright, C. (2007). One step forward, two steps back: advance care planning, Australian regulatory frameworks and the Australian Medical Association. Internal Medicine Journal, 37(9),637-643.
  18. Parker, M., & Cartwright, C. (2004). Advance care planning and end of life decision making. Australian Family Physician, 33, 815-819. Parker, M. (2006). Competence by Consequence: Ambiguity and Incoherence in the Law. Medicine and Law, 25(1), 1-12. http://espace.library.uq.edu.au/view/UQ:83056
  19. Cartwright, C. (2007). Advance care planning in Australia: challenges of a federal legislative system. Progress in Palliative Care, 15(3), 113-117.
  20. Cohen, J., van Delden, J., Mortier, F., Lofmark, R., Norup, M., Cartwright, C., Faisst, K., Canova, C., Bilsen, J. (2008). Influence of physicians' life-stance on attitudes towards end-of-life decisions and actual end-of-life decision-making in six countries. Journal of Medical Ethics, 34, 247-253.
  21. Lofmark, R., Nilstun, T., Cartwright, C., Fischer, S., van der Heide, A., Mortier, F., Norup, M., Simonato, L., Onwuteaka-Philipsen, B., on behalf of the EURELD Consortium. (2008). Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia. BMC Medicine, 6(4).
  22. Lofmark, R., Mortier, F., Nilstun, T., Bosshard, G., Cartwright, C., van der Heide, A., Norup, M., Simonato, L., & Onwuteaka-Philipsen, B. D. (2006). Palliative care training: a survey among physicians in Australia and Europe. Journal of Palliative Care, 22(2), 105-110.
  23. Miccinesi, G., Fischer. S., Paci, E., Onwuteaka-Philipsen, B. D., Cartwright, C. M., van der Heide, A., Nilstun, T., Norup, M., Mortier, F. (2005). Physicians' attitudes towards end-of-life decisions: a comparison between seven countries. Social Science & Medicine, 60, 1961-1974.