Nurses have a significant role in caring for and supporting patients nearing the end of life.
They are involved in clinical decision-making for these patients, as part of a multi-disciplinary team. They provide clinical care, and recognise and respond to patients’ deterioration. Nurses are also an important source of comfort and emotional support for individuals at the end of life, and their families and support networks.
End of life care nursing practice requires knowledge and understanding of the law on medical treatment decision-making and other legal issues that commonly arise when a person is dying.
However, research shows that some nurses have knowledge gaps and lack confidence in this area.1 The End of Life Law for Clinicians2 training program has been designed to help nurses understand and feel more confident about the legal issues they face in end of life clinical practice.
Decisions about treatment and care for people approaching the end of their lives are a frequent, and often challenging part of clinical practice for nurses. The law plays an important role in these situations by providing a broad framework for end of life decision-making and advance care planning. The law also establishes processes for resolving intractable disputes (for example, with families/support networks or substitute decision-makers) and protects nurses and other health professionals who act within the law.
Nurses play critical clinical and legal roles when providing end of life care. For example, nurses are involved in recognising or determining whether or not a person has capacity for medical treatment decision-making. Many nurses will have a unique understanding of an individual’s end of life wishes and needs, and become an important source of information and planning for individuals and families, support networks and substitute decision-makers.3 Nurses may identify the need for advance care planning, initiate planning conversations, and support individuals to make an Advance Care Directive and/or appoint a substitute decision-maker.4, 5 They may be involved in clinical decision-making about withholding or withdrawing active treatment that is not beneficial, and often have a significant role in managing the pain and symptoms of a person with a life-limiting illness.6, 7
Some nurses also have a role in advocating for individuals (as well as families) at the end of life.8,9
Examples include promoting the person’s participation in treatment decision-making and communicating with the clinical team about appropriate pain medication, or the discontinuation of futile or non-beneficial treatment.
Performing these roles successfully relies on having sufficient knowledge of the law that governs end of life decision-making.
Recent research shows that Australian health professionals (including nurses) have knowledge gaps about the law in this area, particularly the law on providing pain and symptom relief, and substitute decision-making.1, 7, 10
Encouragingly, nurses also believe the law has a place in clinical practice and decision-making and want to learn more about it. Relevant continuing professional development was positively associated with legal knowledge, highlighting the importance of education and training initiatives.1
End of Life Law for Clinicians (ELLC)2 is a free national training program that supports nurses and other clinicians who want to know more about end of life law in Australia. It is funded by the Australian Department of Health and developed by the Australian Centre for Health Law Research and Faculty of Health at the Queensland University of Technology.
ELLC addresses the legal issues that are relevant to end of life decision-making. This includes decisions that happen in the ‘last days and months of life’. But importantly, it also includes the planning and decision-making that happens well before this, including before a person has an illness or injury.
ELLC comprises 11 online training modules and national workshops and is complimented by the End of Life Law in Australia website,11 a resource developed for health professionals and the broader community to find out more on end of life law.12
In August 2021 ELLC launched new content for nurses, including tailored case studies and vignettes.
This new content has been developed with input from nurses (including a project team member and external clinicians), and key nursing organisations. Modules explore the role of law in end of life care; capacity and consent to medical treatment; withholding and withdrawing life-sustaining treatment; advance care planning and Advance Care Directives; substitute decision-making for medical treatment; legal protection for administering pain and symptom relief; children and end of life decision-making; futile or non-beneficial treatment; emergency treatment for adults; and managing conflict.
The ELLC training can help nurses to better support others (patients, their families/support networks, or colleagues) when legal issues arise, confidently manage pain relief at the end of life, and prevent, manage and resolve conflict between patients, families/support networks or health professionals about end of life treatment and care.
Knowledge gained from this training can also help nurses manage legal risk and enhance their confidence in delivering care that is lawful.
We invite nurses and nursing students to undertake the ELLC training program. We hope they find it useful in enhancing their legal knowledge and supporting their patients (and patient’s families) with end of life decisions. Certificates of completion are available.
To register for the training visit the End of Life Law for Clinicians training portal.2 For further information or to contact the ELLC team email endoflifelaw@qut.edu.au
References
1 White, BP, Willmott L, Feeney R, Neller P, Then, S-N, Bryant J, Waller A, Yates, P.
Limitations in health professionals’ knowledge of end of life law: A cross-sectional survey. BMJ Support & Palliat Care [Internet]. 2021 Jun [cited 2021 Aug 31];0(1):1-8. Available from: https://spcare.bmj.com/content/early/2021/06/02/bmjspcare-2021-003061
2 White, BP, Willmott, L, Yates, P, Then S-N, Neller, P. End of Life Law for Clinicians [Internet]. Brisbane QLD; 2019. Palliative Care Education and Training Collaborative. Available from: https://palliativecareeducation.com.au/course/index.php?categoryid=5
3 Water T, Ford, K, Spence, D, Rasmussen, S. Patient advocacy by nurses–past, present and future. Contemp Nurse. 2016 Dec; 52(6):696-709.
4 Arbour, RB, Wiegand, D. L. Self-described nursing roles experienced during care of dying patients and their families: A phenomenological study. Intensive Crit Care Nurs. 2014 Aug;30(4):211-218.
5 Ke LS, Huang X, O’Connor M, & Lee S. Nurses’ views regarding implementing advance care planning for older people: A systematic review and synthesis of qualitative studies. Journal of Clinical Nursing. 2015 Aug;24(15-16):2057-2073.
6 Bloomer MJ, Endacott R, Ranse K, Coombs MA. Navigating communication with families during withdrawal of life‐sustaining treatment in intensive care: A qualitative descriptive study in Australia and New Zealand. J Clin Nurs. 2017 Mar;26(5-6):690-697.
7 Willmott L, White B, Yates P, Mitchell G, Currow DC, Gerber K, et al. Nurses’ knowledge of law at the end of life and implications for practice: A qualitative study. Palliat Med. 2020 Apr;34(4):524-532.
8 McSteen, K, Peden-McAlpine C. The role of the nurse as advocate in ethically difficult care situations with dying patients. J Hosp Palliat Nurs. 2006 Sep;8(5):259-269.
9 Ware LJ, Bruckenthal P, Davis GC, O’Conner-Von SK. Factors that influence patient advocacy by pain management nurses: Results of the American society for pain management nursing survey. 2011 Pain Manag Nurs. 2011 Mar;12(1):25-32.
10 Shepherd J, Waller A, Sanson-Fisher R, Clark K, Ball J. Knowledge of, and participation in, advance care planning: A cross-sectional study of acute and critical care nurses’ perceptions. Int J Nurs Stud. 2018 Oct;86:74-81.
11 White BP, Willmott L, Neller P. End of Life Law in Australia [Internet]. Brisbane QLD; 2019. End of Life Law for Clinicians. Available from: https://end-of-life.qut.edu.au/
12 White BP, Willmott L, Neller P .InsightPlus [Internet]. Brisbane QLD; 2016. Clarifying end of life law for doctors. Available from: https://insightplus.mja.com.au/2016/33/clarifying-end-of-life-law-for-doctors/
Authors
- Distinguished Prof Patsy Yates AM: Executive Dean, Faculty of Health and Director, Centre for Healthcare Transformation, Queensland University of Technology
- Dr Rachel Feeney: Senior Research Assistant, End of Life Law for Clinicians, Australian Centre for Health Law Research, Faculty of Business and Law, Queensland University of Technology
- Ms Penny Neller: Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Faculty of Business and Law, Queensland University of Technology
- Prof Ben White: Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Faculty of Business and Law, Queensland University of Technology
- Prof Lindy Willmott: Professor of Law, Australian Centre for Health Law Research, Faculty of Business and Law, Queensland University of Technology
- A/Prof Shih-Ning Then: Associate Professor, Australian Centre for Health Law Research, Faculty of Business and Law, Queensland University of Technology
