Below we hear from Professors Lindy Willmott and Ben White, Directors of the Australian Centre for Health Law Research, Queensland University of Technology whose paper recently won HSRAANZ award for the Best Qualitative Paper.
For decades, researchers from around the world have found evidence that doctors provide futile treatment to adult patients who are dying. Some discussion of this topic has turned on matters of definition (see our recent contribution to this debate), with a broader concept of “perceived inappropriate treatment” being favoured by commentators more recently. However this debate skirts the fundamental issue: how can treatment that may prolong or increase patient suffering, waste scarce health care resources, and cause distress to health care workers still occur in hospitals around the world? In other words, in these days of overworked doctors and underfunded healthcare systems, how is this still an issue?
Some research has tackled this although it has tended to focus on doctors operating in intensive care units and there has been very little research which looks at the reasons given by doctors from a range of specialties about why futile treatment is provided at the end of life.
Our study, undertaken by a team of interdisciplinary researchers, explored the perceptions of doctors on this topic from a range of specialties who are commonly involved with treatment at the end of life. We interviewed 96 doctors at three hospitals in Queensland, Australia, from a range of specialities including intensive care, oncology, internal medicine, cardiology, geriatrics, surgery, and emergency. Doctors reported that doctor-related and patient-related factors were the main drivers of futile treatment, although reasons relating to the institutional nature of hospitals were also important.
Importantly, we found that doctor-related reasons were just as, if not more, important in the provision of futile end-of-life care. Many doctors reported attitudes of their colleagues which reflect a cultural aversion to death. Doctors saw themselves as trained healers who viewed ‘every death as a failure’ and pursued a cure rather than appropriate palliative treatment for dying patients. Doctors described wanting to help the patient and not give up hope that a treatment might provide some benefit. They also said they wanted to satisfy patients, families, and medical professionals themselves that everything possible had been done, due to both emotional attachment to the patient and fear of the legal consequences of refusing demands for treatment. They also admitted to providing families and patients with a smorgasbord of treatment options as a means of avoiding uncomfortable conversations about dying. Doctors’ personalities, religious backgrounds, and their own experiences with death and dying were also said to contribute to the giving of futile treatment.
The study also identified patient-related and institutional factors as important drivers of futile treatment and, as such, suggested the need for an attitudinal shift within the broader community to have conversations about death and dying. We also recommended that hospitals need to look carefully at how they operate to ensure that treatment for a curative goal is not the unthinking default.
But here, we want to stress the critical role of, and opportunity for, doctors individually and the medical profession, as a powerful institution, to bring about change. First – and we think this is critical – doctors themselves are pointing to their own behaviour as an important factor to be addressed, as well as the way tertiary hospitals currently operate. Doctors are owning the problem, and not just blaming this phenomenon on patient/family demand or the law. Secondly, change will not occur unless doctors are prepared to act and to lead. It is not enough to educate the community about the limits of medicine or the importance of ‘a good death’ and so on. Doctors should not be offering treatment that evidence tells us will not work. They should stop ordering routine tests that will not alter treatment or affect patient outcome. They must have the difficult conversations with patients and family instead, notwithstanding how long this conversation may take, or how many times they may have to have it.
This call for action and leadership by doctors does not mean that patients and families are irrelevant and should not be involved in the decision-making process. On the contrary, they need to understand the medical diagnosis and prognosis and what to expect as they or their loved one approaches death. And as we have argued elsewhere, futility is a subjective concept so engagement with patients and families about their values and goals of treatment is essential. As identified by many doctors in our study, communication is the key. And, of course, doctors need to be supported institutionally to do this. Taking the time to have the conversations need to be recognised as part of their day job, and valued as highly as reducing surgery waiting lists or efficiencies in emergency departments.
Are doctors up for this challenge?
[For more information about this research, see Lindy Willmott, Ben White, Cindy Gallois, Malcolm Parker, Nicholas Graves, Sarah Winch, Leonie Callaway, Nicole Shepherd, Eliana Close, ‘Reasons doctors provide futile treatment at the end of life: a qualitative study’ (2016) 42 Journal of Medical Ethics 496-503]
Professor Lindy Willmott, Director, Australian Centre for Health Law Research, Queensland University of Technology, Australia
Professor Ben White, Director, Australian Centre for Health Law Research, Queensland University of Technology, Australia
Lindy Willmott is a Professor with the Faculty of Law at the Queensland University of Technology and a Director of the Australian Centre for Health Law Research at QUT. She researches in the area of health law, particularly end-of-life issues and is currently undertaking a number of empirical research projects funded by the ARC. She is also a Chief Investigator in a NHMRC funded Centre of Research Excellence on End of Life. Lindy is also the author of many text books and is one of the editors of the text ‘Health Law in Australia’.
Professor Ben White is a Director of the Australian Centre for Health Law Research in the Faculty of Law at the Queensland University of Technology (QUT). Ben graduated with first class Honours and a University Medal in Law from QUT and then completed a DPhil at Oxford University on a Rhodes Scholarship. Before joining the Law Faculty, he worked as an associate at the Supreme Court and at Legal Aid Queensland. Between 2005 and 2007, Ben was appointed as the full-time Commissioner of the Queensland Law Reform Commission where he had carriage of the Guardianship Review on behalf of the Commission. He also served as a part-time Commissioner between 2007 and 2010. Ben’s area of research focus is end of life decision-making and he is undertaking a number of Australian Research Council funded studies examining law at the end of life. He is currently a committee member of the Australasian Association of Bioethics and Health Law and an editor of ‘Health Law in Australia’