Tracking end-of-life decisions: a survey

AS the Australian population lives longer and life-sustaining technology continues to advance, decisions at the end-of-life are becoming increasingly difficult, engaging complex medical, ethical, legal and psychosocial considerations. Causes of death have shifted away from acute infectious diseases towards chronic degenerative illnesses. Because of this shift, many patients at the end of their lives will require comfort-oriented care, including intensified alleviation of pain and symptoms or forgoing burdensome treatment. When suffering becomes intolerable, some patients may even develop a desire to hasten the end of their lives. These developments mean that there is an increasing likelihood that death will occur after a medical decision to provide, withhold or withdraw treatment. Though relatively uncommon, death can also occur following a decision by a patient to stop eating and drinking.

Research from Europe suggests that medical end-of-life decisions are prevalent, though the incidence varies widely between countries, from between 23% of all deaths in Italy to 51% in Switzerland; other studies have found the prevalence to be as high as 58% in the Netherlands and over 74% in Switzerland. These medical end-of-life decisions take several forms, the most common being withholding and withdrawing life-prolonging treatment (“non-treatment” decisions), and alleviating pain with potentially life-shortening doses of opioids. Some of the international studies also reveal that the percentage of deaths that are occurring through “continuous deep sedation” are increasing.

Little is known in Australia about the incidence of medical decisions that may precede a patient’s death, and the patient characteristics surrounding that death. Early research undertaken in Australia in the 1990s estimated that approximately 64.8% of Australian deaths followed a medical decision at the end of the patient’s life. The most common decisions related to non-treatment of the patient and the provision of medication for the purpose of relieving pain and symptoms of the patient. However, this study did not provide information about deaths arising as a result of deep sedation or, for example, a patient’s decision to stop eating and drinking. Nor has research been undertaken subsequently to determine whether there has been a change to the incidence of end-of-life decisions as calculated by this early research.

The authors of this article are now undertaking research to collect such data. Our large-scale study explores the incidence and nature of medical end-of-life decisions involving adult patients in one Australian state (Victoria) by administering an online and postal survey to a large sample of doctors. The research aims to determine the types of decisions currently being made; for example, whether they involve withholding or withdrawing life-prolonging measures, providing potentially life-shortening doses of opioids, providing deep sedation up until death, or whether the patient decides to stop eating and drinking. The researchers will also explore decision making processes, including who was involved in the decision, the relevant patient characteristics associated with those decisions and the extent to which the patient had access to palliative care leading up to the patient’s death. This study will adopt the protocol employed by Kuhse and colleagues. The survey instrument has been used in international studies, but it has been tested and then adapted for Australian conditions.

This research is expected to provide an evidence base to evaluate and improve existing medical practice in relation to end-of-life decisions in Victoria and elsewhere in Australia. The data will provide insight into the incidence and characteristics of these decisions involving adult patients, whether variations occur on the basis of the patient’s medical circumstances, clinical settings, medical specialty, and the extent to which palliative care is available.

This foundational data are needed to better understand current practice and drive practice improvement. Data will also inform whether the current regulatory framework adequately supports safe medical practice.

This research does not explore medical practice relating to the Voluntary Assisted Dying Act 2017 (Vic). The survey relates to current practice prior to the commencement of the Victorian legislation on 19 June 2019. The results will therefore provide a snapshot of current medical practice in Victoria. To the extent that medical practice in Victoria reflects medical practice in other states and territories, it should also provide insight into medical practice around Australia generally.

Although this survey does not relate to the Voluntary Assisted Dying Act 2017 (Vic), it should also provide baseline data that will be important in assessing the extent to which medical practice may alter following the introduction of that legislation in Victoria. International studies (here, here, and here) on the incidence and characteristics of end-of-life decisions carried out before and after the legalisation of voluntary assisted dying have tracked a change in the nature of decisions that are made. It remains to be seen whether similar trends will occur in Victoria, and baseline data are necessary to facilitate such comparisons.

A large sample of Victorian doctors in specialties likely to be involved in end-of-life decisions will be contacted in April and May to invite them to participate in this research by completing an anonymous survey. We appreciate doctors’ support and participation in this important research.

Professor Lindy Willmott is Professor of Law at the Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology.

Professor Ben White 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.

Professor Geoffrey Mitchell is Professor of General Practice and Palliative Care at the Faculty of Medicine, at the University of Queensland.

Professor Kenneth Chambaere is Assistant Professor at the End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Belgium.

Dr Rachel Feeney is a Postdoctoral Research Fellow at the Australian Centre for Health Law Research, Faculty of Law, Queensland University of Technology.

 

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 so stated.