Register      Login
Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE (Open Access)

‘Can a relative override a patient’s Advance Care Directive?’: end-of-life legal worries of general practitioners and nurses working in aged care

Ben White A , Rachel Feeney https://orcid.org/0000-0002-8306-1030 A * , Marcus Sellars A C , Penny Neller A , Patsy Yates B and Lindy Willmott A
+ Author Affiliations
- Author Affiliations

A Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Qld, Australia.

B Faculty of Health, Office of the Executive Dean, Queensland University of Technology, Brisbane, Qld, Australia.

C Present address: Department of Health Services Research & Policy, Research School of Population Health, College of Health & Medicine, The Australian National University, Canberra, ACT, Australia.

* Correspondence to: rachel.feeney@qut.edu.au

Australian Journal of Primary Health 30, PY23213 https://doi.org/10.1071/PY23213
Submitted: 12 December 2023  Accepted: 31 January 2024  Published: 15 February 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution 4.0 International License (CC BY)

Abstract

Background

This paper aimed to describe the legal worries of Australian general practitioners (GPs) and nurses regarding end-of-life care provided in the aged care setting.

Methods

An analysis of responses to the final, open-ended question of a cross-sectional online survey of GPs and nurses practising in aged care settings in Queensland, New South Wales and Victoria was undertaken.

Results

Of the 162 GPs and 61 nurses who gave valid responses to the survey, 92% (151 GPs and 55 nurses) responded to the open-ended question. Participants identified concerns across all relevant areas of end-of-life law. The most common concerns were substitute decision-makers or family member(s) wanting to overrule an Advance Care Directive, requests for futile or non-beneficial treatment and conflict about end-of-life decision-making. Participants often also identified concerns about their lack of legal knowledge and their fear of law or risk related to both end-of-life care generally and providing medication that may hasten death.

Conclusions

Australian GPs and nurses working in aged care have broad-ranging legal concerns about providing end-of-life care. Legal concerns and knowledge gaps identified here highlight priority areas for future training of the aged care workforce.

Keywords: Advance Care Planning, aged, end-of-life care, general practitioners, health law, medical law, nurses, palliative care.

References

Australian Health Ministers’ Advisory Council (2017) National strategic framework for chronic conditions. Australian Government, Canberra, ACT, Australia. Available at https://www.health.gov.au/sites/default/files/documents/2019/09/national-strategic-framework-for-chronic-conditions.pdf [Verified 11 December 2023]

Australian Institute of Health and Welfare (2023) How long can Australians live? Australian Government, Canberra, ACT, Australia. Available at https://www.aihw.gov.au/getmedia/da6b92c7-60c2-4c66-aab7-63bb26fc71fd/aihw-phe-324.pdf?v=20230711085556&inline=true [Verified 11 December 2023]

End of Life Directions for Aged Care (2023) ELDAC: end of life directions for aged care. Available at https://www.eldac.com.au/ [Verified 11 December 2023]

Gerber K, Willmott L, White B, Yates P, Mitchell G, Currow DC, Piper D (2022) Barriers to adequate pain and symptom relief at the end of life: a qualitative study capturing nurses’ perspectives. Collegian 29, 1-8.
| Crossref | Google Scholar |

Gurung A (2018) Deciding to transfer a resident to the emergency department: a phenomenographic examination of decision-making in residential aged care. PhD Thesis, Queensland University of Technology, Brisbane, Qld, Australia. Available at https://eprints.qut.edu.au/120022/1/Apil_Gurung_Thesis.pdf [Verified 11 December 2023]

Health, Communities, Disability Services and Domestic and Family Violence Prevention Committee (2020) Aged care, end-of-life and palliative care: findings and recommendations. Queensland Parliament, Brisbane, Qld, Australia. Available at https://documents.parliament.qld.gov.au/tableoffice/tabledpapers/2020/5620t466.pdf [Verified 11 December 2023]

Johnson CE, Mitchell G, Thomas K (2010) The potential for a structured approach to palliative and end of life care in the community in Australia. Australasian Medical Journal 3, 313-317.
| Crossref | Google Scholar |

Lane H, Philip J (2015) Managing expectations: providing palliative care in aged care facilities. Australasian Journal on Ageing 34, 76-81.
| Crossref | Google Scholar | PubMed |

Mitchell GK, Willmott L, White BP, Piper D, Currow DC, Yates PM (2019) A perfect storm: fear of litigation for end of life care. Medical Journal of Australia 210, 441-441.e1.
| Crossref | Google Scholar | PubMed |

Rainsford S, Johnston N, Liu W-M, Glasgow N, Forbat L (2020) Palliative care needs rounds in rural residential aged care: a mixed-methods study exploring experiences and perceptions of staff and general practitioners. Progress in Palliative Care 28, 308-317.
| Crossref | Google Scholar |

Royal Commission into Aged Care Quality and Safety (2021) Final report: care, dignity and respect. Volume 1, summary and recommendations. Commonwealth of Australia, Canberra, ACT, Australia. Available at https://www.royalcommission.gov.au/system/files/2021-03/final-report-volume-1.pdf [Verified 11 December 2023]

Sellars M, White B, Yates P, Willmott L (2022) Knowledge of end-of-life law: a cross-sectional survey of general practitioners working in aged care. Australasian Journal on Ageing 41, 265-273.
| Crossref | Google Scholar | PubMed |

Shepherd J, Waller A, Sanson-Fisher R, Clark K, Ball J (2018) Knowledge of, and participation in, advance care planning: a cross-sectional study of acute and critical care nurses’ perceptions. International Journal of Nursing Studies 86, 74-81.
| Crossref | Google Scholar | PubMed |

Silvester W, Fullam RS, Parslow RA, Lewis VJ, Sjanta R, Jackson L, White V, Gilchrist J (2013) Quality of advance care planning policy and practice in residential aged care facilities in Australia. BMJ Supportive & Palliative Care 3, 349-357.
| Crossref | Google Scholar | PubMed |

White B, Willmott L, Cartwright C, Parker MH, Williams G (2014) Doctors’ knowledge of the law on withholding and withdrawing life-sustaining medical treatment. Medical Journal of Australia 201, 229-232.
| Crossref | Google Scholar | PubMed |

White BP, Willmott L, Williams G, Cartwright C, Parker M (2017a) The role of law in decisions to withhold and withdraw life-sustaining treatment from adults who lack capacity: a cross-sectional study. Journal of Medical Ethics 43, 327-333.
| Crossref | Google Scholar | PubMed |

White B, Willmott L, Cartwright C, Parker M, William G (2017b) Withholding and withdrawing life-sustaining medical treatment from adults who lack capacity: the role of law in medical practice. Australian Centre for Health Law Research, Brisbane, Qld, Australia. Available at https://eprints.qut.edu.au/118303/13/WWLST_from_adults_who_lack_capacity_FINAL.pdf [Verified 11 December 2023]

White BP, Willmott L, Yates P, Then S-N, Neller P (2019) ELLC – end of life law for clinicians. End of Life Law for Clinicians, Brisbane, Qld, Australia. Available at https://ellc.edu.au/ [Verified 11 December 2023]

Willmott L, White B, Close E, Gallois C, Parker M, Graves N, Winch S, Callaway L, Shepherd N (2016) Futility and the law: knowledge, practice and attitudes of doctors in end of life care. QUT Law Review 16, 55-75.
| Crossref | Google Scholar |

Willmott L, White B, Piper D, Yates P, Mitchell G, Currow D (2018) Providing palliative care at the end of life: should health professionals fear regulation? Journal of Law and Medicine 26, 214-245.
| Google Scholar | PubMed |

Willmott L, White B, Yates P, Mitchell G, Currow DC, Gerber K, Piper D (2020) Nurses’ knowledge of law at the end of life and implications for practice: a qualitative study. Palliative Medicine 34, 524-532.
| Crossref | Google Scholar | PubMed |

Willmott L, White B, Feeney R, Tilse C, Wilson J, Aitken J (2021) Role of law in end-of-life decision-making: perspectives of patients, substitute decision-makers and families. Journal of Law and Medicine 28, 813-830.
| Crossref | Google Scholar | PubMed |