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Balancing Patient and Societal Interests in Decisions About Potentially Life-Sustaining Treatment

An Australian Policy Analysis

  • Original Research
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Abstract

Background

This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources.

Methods

All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation.

Results

Four resource-related themes were identified: (1) doctors’ ethical duties to consider resource allocation; (2) balancing ethical obligations to patient and society; (3) fair process and transparent resource allocation; and (4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment.

Conclusion

Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors’ duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about life-sustaining treatment.

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Notes

  1. While a detailed conceptual discussion is beyond the scope of this article, we note that definitions of rationing, like definitions of futility, are contested (Walker and Egede 2016).

  2. For example, in Northridge v Central Sydney Area Health Service [2000] NSWLR 1241, O’Keefe J stated at [22] “The exercise of the parens patriae jurisdiction should not be for the benefit of others (Re Eve (1987) 31 DLR (4th) 1 at 34), including a health care system that is intent on saving on costs.” Similarly, in Messiha v South East Health [2004] NSWSC 1061 at [9] Howie J noted that a reference made by the treating doctor about the availability of the intensive care unit resources was “… arguably … an irrelevant matter, at least so far as the welfare of the patient was concerned … and might have been taken as a form of pressure on the family to agree with the hospital’s decision.”

  3. Rationing policies could include guidelines about organ transplantation or dialysis. However, courts can still be reluctant to engage with whether a decision can be challenged on the basis of scarce resources. See Manning and Paterson’s (2005) criticism of Shortland v Northland Health Ltd, a New Zealand case in which a patient was denied access to dialysis. The High Court (unreported, 6 November 1997, Salmon J) indicated that resources were only a minor factor and the Court of Appeal ([1998] 1 NZLR 433, 443) denied there was any resource element to the decision.

  4. This definition was developed from Goodridge (2010, 1166), which described institutional policies as: “declarations of the organizations’ deeply held values … instructing employees on how to conduct business in a legal, ethical and safe manner.” For further discussion of the method see Close et al. 2019a, 420–422.

  5. Examples of clinical guidance documents excluded are those focused on unnecessary diagnostic tests (see, e.g., Choosing Wisely Australia and https://www.racgp.org.au/advocacy/position-statements/view-all-position-statements/clinical-and-practice-management/responding-to-patient-requests-for-tests), organ allocation guidelines (e.g., https://www.tsanz.com.au/organallocationguidelines/), and dialysis policies (e.g., https://kidney.org.au/advocacy/advocacy-and-policy/resources-publications/publications/clinical-guidelines).

  6. As noted in footnote 2, in Messiha the court stated that resources were “an irrelevant matter, at least so far as the welfare of the patient was concerned”: Messiha v South East Health [2004] NSWSC 1061. In TS & DS v Sydney Children’s Hospitals Network (Mohammed’s case) [2012] NSWSC 1207 the court acknowledged that there could be cases when resource-based non-treatment rationales are used. Garling J stated at [64], “[t]here may be occasions when such issues arise. If they do, there are undoubtedly complex questions of public health policy to be considered, and also whether, a Court is best fitted to engage in that area of discourse. Fortunately, in this case, this issue did not arise.”

References

  • Australian and New Zealand Intensive Care Society. 2014. ANZICS statement on care and decision-making at the end of life for the critically ill. Edition 1.0. https://www.anzics.com.au/wp-content/uploads/2018/08/ANZICS-Statement-on-Care-and-Decision-Making-at-the-End-of-Life-for-the-Critically-Ill.pdf. Accessed November 6, 2019.

  • Australian Medical Association. 2014. Position statement on end of life care and advance care planning. https://ama.com.au/position-statement/end-life-care-and-advance-care-planning-2014. Accessed Nov 6, 2019.

  • Australian Medical Association. 2016a. AMA code of ethics 2004. Editorially revised 2006. Revised 2016. https://ama.com.au/position-statement/code-ethics-2004-editorially-revised-2006-revised-2016. Accessed November 6, 2019.

  • ———. 2016b. AMA position statement—The doctor's role in stewardship of health care resources. https://ama.com.au/position-statement/doctors-role-stewardship-health-care-resources-2016. Accessed November 6, 2019.

  • Bosslet, G.T., T.M. Pope, G.D. Rubenfeld, et al. 2015. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine 191(11): 1318–1330.

    Article  PubMed  Google Scholar 

  • Braun, V., and V. Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3(2): 77–101.

    Article  Google Scholar 

  • Brick, C., G. Kahane, D. Wilkinson, L. Caviola, and J. Savulescu. 2019. Worth living or worth dying? The views of the general public about allowing disabled children to die. Journal of Medical Ethics 46: 7–15. 

  • Brody, H. 2012. From an ethics of rationing to an ethics of waste avoidance. New England Journal of Medicine 366(21): 1949–1951. 

  • Carter, H.E., S. Winch, A.G. Barnett, et al. 2017. Incidence, duration and cost of futile treatment in end-of-life hospital admissions to three Australian public-sector tertiary hospitals: A retrospective multicentre cohort study. BMJ Open 7: e017661.

    Article  PubMed  PubMed Central  Google Scholar 

  • Cassel, C.K., and J.C. Tilburt. 2013. Why the ethics of parsimonious medicine is not the ethics of rationing. JAMA 309(8): 773–774.

    Article  PubMed  Google Scholar 

  • Close, E., M. Parker, L. Willmott, B. White, and A. Crowden. 2019a. Australian policies on “futile” or “non-beneficial” treatment at the end of life: A qualitative content analysis. Journal of Law and Medicine 27(2): 415–439.

    PubMed  Google Scholar 

  • Close, E., B.P. White, L. Willmott, et al. 2019b. Doctors’ perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis. Journal of Medical Ethics 45: 373–379.

    Article  PubMed  Google Scholar 

  • Close, E., L. Willmott, and B.P. White. 2018. Charlie Gard: In defence of the law. Journal of Medical Ethics 44(7): 476–480.

    Article  PubMed  Google Scholar 

  • Cohen, A.B. 2012. The debate over health care rationing: Déjà vu all over again? Inquiry 49(2): 90–100.

    Article  PubMed  Google Scholar 

  • College of Intensive Care Medicine of Australia and New Zealand. 2003, last reviewed in 2013. Statement on withholding and withdrawing treatment. https://cicm.org.au/CICM_Media/CICMSite/CICM-Website/Resources/Professional%20Documents/IC-14-Statement-on-Withholding-and-Withdrawing-Treatment.pdf. Accessed November 6, 2019.

  • Daniels, N. 2000. Accountability for reasonableness. BMJ 321(7272): 1300–1301.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Fleck, L.M. 2016. Choosing wisely is parsimonious care just rationing? Cambridge Quarterly of Healthcare Ethics 25(3): 366–376.

    Article  PubMed  Google Scholar 

  • Goodridge, D. 2010. End of life care policies: Do they make a difference in practice? Social Science and Medicine 70(8): 1166–1170.

    Article  PubMed  Google Scholar 

  • Hawryluck, L. 2006. Ethics review: Position papers and policies—are they really helpful to front-line ICU teams? Critical Care 10(6): 242–245.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hurst, S., A-M Slowther, Reidun Forde, et al. 2006. Prevalence and determinants of physician bedside rationing: Data from Europe. Journal of General Internal Medicine 21(11): 1138–1143.

    Article  PubMed  PubMed Central  Google Scholar 

  • Huynh, T.N., E.C. Kleerup, P.P. Raj, and N.S. Wenger. 2014. The opportunity cost of futile treatment in the ICU. Critical Care Medicine 42(9): 1977–1982.

    Article  PubMed  Google Scholar 

  • Jackson, Emily. 2015. The relationship between medical law and good medical ethics. Journal of Medical Ethics 41(1): 95–98.

    Article  PubMed  Google Scholar 

  • Lantos, J. 2018. Intractable disagreements about futility. Perspectives in Biology and Medicine 60(3): 390–399.

    Article  PubMed  Google Scholar 

  • Levinson, M., A. Mills, A.M. Hutchinson, G. Heriot, G. Stephenson, and A. Gellie. 2014. Comparison of not for resuscitation (NFR) forms across five Victorian health services. Internal Medicine Journal 44(7): 671–675.

    Article  CAS  PubMed  Google Scholar 

  • Levinsky, N.G. 1984. The doctor’s master. The New England Journal of Medicine 311(24): 1573–1575.

    Article  CAS  PubMed  Google Scholar 

  • Manning, J., and R. Paterson. 2005. Prioritization: Rationing health care in New Zealand. The Journal of Law, Medicine & Ethics 33(4): 681–697.

    Article  Google Scholar 

  • Martin, D. 2013. Medical futility in Australia. In Medical futility: A cross-national study, edited by A. Bagheri, 119–144. London: Imperial College Press.

    Chapter  Google Scholar 

  • McDonald, F. 2017. The legal system and the legitimacy of clinical guidelines. Journal of Law and Medicine 24: 821–836.

    Google Scholar 

  • Medical Board of Australia. 2014. Good medical practice: A code of conduct for doctors in Australia. https://www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx. Accessed November 6, 2019.

  • Medical Council of New Zealand. 2018. Safe practice in an environment of resource limitation. https://www.mcnz.org.nz/assets/standards/ca25302789/Safe-practice-in-an-environment-of-resource-limitation.pdf. Accessed March 30, 2020.

  • Miles, M.B., A.M. Huberman, and J. Saldaña. 2014. Qualitative data analysis: A methods sourcebook. 3rd ed. Thousand Oaks, CA: SAGE Publications.

    Google Scholar 

  • Müller, R. and S. Kaiser. 2018. Perceptions of medical futility in clinical practice—A qualitative systematic review. Journal of Critical Care 48: 78–84.

    Article  PubMed  Google Scholar 

  • National Health and Medical Research Council. 2008. Ethical guidelines for the care of people in post-coma unresponsiveness (vegetative state) or a minimally responsive state. Australian Government. https://www.nhmrc.gov.au/about-us/publications/ethical-guidelines-care-people-post-coma-unresponsiveness. Accessed November 6, 2019.

  • Parker, C., and J. Braithwaite. 2005. Regulation. In The Oxford handbook of legal studies, edited by M. Tushnet and P. Cane, 119–145. Oxford: Oxford University Press.

    Google Scholar 

  • Pope, T.M. 2016. Texas advance directives act: Nearly a model dispute resolution mechanism for intractable medical futility conflicts. QUT Law Review 16(1): 22–53.

    Article  Google Scholar 

  • Queensland Health. 2018. End-of-life care: Guidelines for decision-making about withholding and withdrawing life-sustaining measures from adult patients. https://www.health.qld.gov.au/__data/assets/pdf_file/0033/688263/acp-guidance.pdf. Accessed November 6, 2019.

  • Rubin, M.A., and R.D. Truog. 2017. What to do when there aren’t enough beds in the PICU. AMA Journal of Ethics 19(2): 157–163.

    Article  PubMed  Google Scholar 

  • Scheunemann, L.P., and D.B. White. 2011. The ethics and reality of rationing in medicine. Chest 140(6): 1625–1632.

    Article  PubMed  PubMed Central  Google Scholar 

  • Tilburt, J.C. 2014. Addressing dual agency: Getting specific about the expectations of professionalism. The American Journal of Bioethics 14(9): 29–36.

    Article  PubMed  Google Scholar 

  • Truog, R.D. 2017. The United Kingdom sets limits on experimental treatments: The case of Charlie Gard. JAMA 318(11): 1001–1002.

    Article  PubMed  Google Scholar 

  • Truog, R.D., D.W. Brock, D.J. Cook, et al. 2006. Rationing in the intensive care unit. Critical Care Medicine 34(4): 958–963.

    Article  PubMed  Google Scholar 

  • Ubel, P.A. 2015. Why it’s not time for health care rationing. Hastings Center Report 45(2): 15–19.

    Article  Google Scholar 

  • Ubel, P.A., and S. Goold. 1997. Recognizing bedside rationing: Clear cases and tough calls. Annals of Internal Medicine 126(1): 74–80.

    Article  CAS  PubMed  Google Scholar 

  • Walker, R.J., and L.E. Egede. 2016. Rationing of care: Conceptual ambiguity and transparency in data collection and synthesis. Journal of General Internal Medicine 31 (12):1415–1416.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ward, N.S., J.M. Teno, J.R. Curtis, G.D. Rubenfeld, and M.M. Levy. 2008. Perceptions of cost constraints, resource limitations, and rationing in United States intensive care units: Results of a national survey. Critical Care Medicine 36(2): 471–476.

    Article  PubMed  Google Scholar 

  • White, B., L. Willmott, E. Close, and J. Downie. 2017. Withholding and withdrawing potentially life-sustaining treatment: Who should decide? In Tensions and traumas in health law, edited by I. Freckelton and K. Petersen, 454–478. Alexandria, NSW: Federation Press.

    Google Scholar 

  • White, B., L. Willmott, E. Close, et al. 2016. What does “futility” mean? An empirical study of doctors’ perceptions. Medical Journal of Australia 204(8): 318e.1–318e.5.

    Article  Google Scholar 

  • Wilkinson, D., and J. Savulescu. 2019. Current controversies and irresolvable disagreement: The case of Vincent Lambert and the role of “dissensus”. Journal of Medical Ethics 45: 631–635.

    Article  PubMed  Google Scholar 

  • Wilkinson, D.J.C., and R.D. Truog. 2013. The luck of the draw: physician-related variability in end-of-life decision-making in intensive care. Intensive Care Medicine 39(6): 1128–1132.

    Article  PubMed  Google Scholar 

  • Willmott, L., B. White, M.K. Smith, and D.J.C. Wilkinson. 2014. Withholding and withdrawing life-sustaining treatment in a patient’s best interests: Australian judicial deliberations. Medical Journal of Australia 201(9): 545–547.

    Article  Google Scholar 

  • Wyller, VB. 2014. Give to the doctor what is due to the doctor! Why “fair rationing at the bedside” is impossible. In Fair Resource Allocation and Rationing at the Bedside, edited by M. Danis, S. Hurst, and L. Fleck, 253–262. New York: Oxford University Press.

    Chapter  Google Scholar 

  • Young, M.J., S.E.S. Brown, R.D. Truog, and S.D. Halpern. 2012. Rationing in the intensive care unit: To disclose or disguise? Critical Care Medicine 40(1): 261–266.

    Article  PubMed  Google Scholar 

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Funding

Eliana Close was funded by scholarships from the Australian Government Research Training Program and the National Health and Medical Research Council Centre of Research Excellence in End of Life Care.

The authors declare no competing interests.

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Authors and Affiliations

  1. Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology, 2 George St, Brisbane, Queensland, 4000, Australia

    Eliana Close, Ben P. White & Lindy Willmott

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  1. Eliana Close
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  2. Ben P. White
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  3. Lindy Willmott
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Contributions

Eliana Close, Ben White, and Lindy Willmott conceived of the study. Data collection and analysis were performed by Eliana Close. Ben White and Lindy Willmott contributed to the data analysis. The first draft of the manuscript was written by Eliana Close, and all authors critically revised subsequent drafts. All authors read and approved the final manuscript.

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Correspondence to Eliana Close.

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Close, E., White, B.P. & Willmott, L. Balancing Patient and Societal Interests in Decisions About Potentially Life-Sustaining Treatment. Bioethical Inquiry 17, 407–421 (2020). https://doi.org/10.1007/s11673-020-09994-7

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