DECISIONS about treatment and care for patients at the end of life are a frequent, and often challenging part of mainstream clinical practice. These decisions necessarily involve the law.
For example, over 40 000 deaths occur in Australia each year following a medical decision to withhold or withdraw life-sustaining medical treatment. When will this kind of decision be lawful, and when will it not? This may depend on whether or not the person has capacity, their views on treatment (expressed now or in the past), and the nature of the decision proposed.
When clinicians are involved in end-of-life decisions, not knowing the law can have serious consequences – for doctors and their patients. Decisions can become more complicated and difficult in urgent situations, when an adult patient lacks decision making capacity, or when the patient is a child. Unfortunately, the law that applies is often complex, varies depending on the individual case, and differs across Australia.
To provide a resource to support doctors who want to know more about the law in this area, we have launched End of Life Law for Clinicians (ELLC). This is a free national training program for clinicians and medical students about end of life law in Australia. The program, funded by the Australian Department of Health, comprises online training modules and national workshops which clarify the law that applies to end-of-life decision making.
ELLC was developed in response to findings from our empirical research into doctors’ knowledge of the law on withholding and withdrawing life-sustaining medical treatment. The research, co-authored with our colleagues from the University of Queensland and Southern Cross University, surveyed doctors from seven specialties in Victoria, New South Wales and Queensland.
The results, published in the MJA in 2014, revealed significant legal knowledge gaps among many doctors involved in end-of-life decision making. Areas of uncertainty included when is an advance care directive valid or whether a doctor is legally obliged to follow a directive that refuses treatment when treatment is clinically indicated. Identifying a patient’s legally authorised substitute decision maker was also problematic.
The study also examined doctors’ attitudes to law, including their views on the role of law in clinical practice. Respondents indicated strong support for the proposition that law has a place in the practice of medicine (88% strongly agreed or agreed) and strong disagreement for the proposition that law is not relevant to making end-of-life decisions (77% strongly disagreed or disagreed).
Encouragingly, 82% of participants strongly agreed or agreed they would like to know more about the law, and nominated workshops based on case studies and online resources as their preferred method of continuing professional development (CPD) delivery. The study also found a strong positive link between knowledge level and recent CPD training.
The ELLC training program has been designed specifically for medical specialists and trainees, junior doctors and medical students. Its ten 30-minute online modules address key end-of-life legal topics, including capacity and consent to medical treatment, withholding and withdrawing treatment, advance care directives, substitute decision making, providing palliative medication, futile or non-beneficial treatment, emergency treatment, end-of-life decision making for children, and managing disputes. The modules contain interactive exercises, legal cases, self-assessment quizzes and further readings.
The training also addresses the differences in the laws in all eight Australian jurisdictions through End of Life Law in Australia, a resource developed for health professionals and the broader community to find out more on end-of-life law. In addition to the online modules, 22 workshops focusing on clinical case studies will be delivered across Australia throughout 2019–20, in partnership with the medical and health sectors. CPD points may be claimed for both modules and workshops, and certificates of completion are available.
In developing this training, we acknowledge the support and advice from key professional stakeholders, including various medical professional bodies, colleges and societies, as well as medical schools. The training was also refined after user testing with clinician focus groups.
We have previously argued that there is a place for law in supporting medicine, and that legal knowledge is an important component of clinicians’ expertise. Knowing the law can benefit clinicians in a number of ways, including reducing legal risk and defensive medicine, assisting with navigating conflict (eg, disputes with patients and families), enhancing confidence in clinical decision making, and supporting good medical practice. Importantly, it also supports better patient and family outcomes, such as respect for individuals’ autonomy and end-of-life choices, improved communication, legally appropriate decisions by substitute decision makers, and better end-of-life experiences.
One example of how knowing the law can improve end-of-life experiences for both clinicians and patients is in the area of pain relief at the end of life. There is anecdotal evidence from Australia and overseas that suggests some patients do not have their pain and symptoms adequately controlled as they approach death due to some health professionals’ concerns about legal repercussions if their patient dies after receiving pain-relieving medication. Module 6 of ELLC explores the law on this issue, and clarifies that provision of appropriate medication for pain and symptom relief that is intended to relieve pain is lawful.
A further example is where providing life-sustaining treatment to a person would be futile or non-beneficial. Module 8 of ELLC explores the law about futile treatment, and when it can be withheld or withdrawn from a patient. Knowing these laws can help doctors navigate the complex patient and family dynamics that can arise in these circumstances.
Patients and families are also relying on clinicians as one of their primary sources of information about the law at the end of life. Three of the authors, with colleagues from the University of Queensland, recently undertook an Australian Research Council study on community knowledge of the law about end-of-life decision making. Almost half of the participants (48%) of the study’s sample (approximately 1100 people across NSW, Victoria and Queensland) reported that to find out more about end-of-life decision making they would seek information from health or medical professionals. Only 14% indicated they would seek information from a legal professional. These results demonstrate the significant trust and confidence patients have in their doctors when it comes to the end of life, and that having knowledge of the law, and knowing where to access accurate legal information, is important.
We invite clinicians to undertake the ELLC training program and hope they find it useful in enhancing their legal knowledge in clinical practice and when supporting their patients (and patients’ families) with end-of-life decisions.
To register for the training visit the End of Life Law for Clinicians training portal.
Professor Ben White is Professor of Law at the Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology.
Professor Lindy Willmott is Professor of Law at the Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology.
Professor Patsy Yates is the Director of the Centre for Palliative Care Research and Education and Head of the School of Nursing at Queensland University of Technology.
Dr Shih-Ning Then is a Senior Lecturer at the Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology.
Penny Neller is the Project Coordinator of End of Life law for Clinicians.
Dr Rachel Feeney is the Senior Research Assistant for End of Life Law for Clinicians.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless that is so stated.