A challenge in end-of-life care is requests by patients or their substitute decision-makers for treatment that doctors consider is "futile" or "non-beneficial". Concerns that these concepts are uncertain and subjective have led to calls for medical policies to clarify terminology and to provide procedural solutions to prevent and address disputes. This article provides a comprehensive analysis of how Australian medical guidelines and policies on withholding or withdrawing potentially life-sustaining treatment address futility. It demonstrates that while the concept is found throughout medical policies and guidelines, the terminology employed is inconsistent. There is also variability in the extent of guidance given about unilateral decision-making and mechanisms for dispute resolution. This is problematic, given that the question of further treatment can often only be determined in relation to the individual patient's goals and values. We conclude by advocating for the development of a unified policy approach to futile or non-beneficial treatment in Australia.
Objective: To quantitatively assess the factors associated with non-beneficial treatments (NBTs) in hospital admissions at the end of life.
Design: Retrospective multicentre cohort study.
Setting Three large, metropolitan tertiary hospitals in Australia.
Participants: 831 adult patients who died as inpatients following admission to the study hospitals over a 6-month period in 2012.
Main outcome measures: Odds ratios (ORs) of NBT derived from logistic regression models.
Results: Overall, 103 (12.4%) admissions involved NBTs. Admissions that involved conflict within a patient’s family (OR 8.9, 95% CI 4.1 to 18.9) or conflict within the medical team (OR 6.5, 95% CI 2.4 to 17.8) had the strongest associations with NBTs in the all subsets regression model. A positive association was observed in older patients, with each 10-year increment in age increasing the likelihood of NBT by approximately 50% (OR 1.5, 95% CI 1.2 to 1.9). There was also a statistically significant hospital effect.
Conclusions: This paper presents the first statistical modelling results to assess the factors associated with NBT in hospital, beyond an intensive care setting. Our findings highlight potential areas for intervention to reduce the likelihood of NBTs.
OBJECTIVE: To increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.
SETTING: Three tertiary hospitals in metropolitan Brisbane, Australia.
DESIGN: Qualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis.
RESULTS: Doctors' perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.
CONCLUSIONS: Doctors' ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors' role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.
Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors' decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative "constitutive" model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific "facts" of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician's evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion.
BACKGROUND: Law purports to regulate end-of-life care but its role in decision-making by doctors is not clear. This paper, which is part of a three-year study into the role of law in medical practice at the end of life, investigates whether law affects doctors' decision-making. In particular, it considers whether the fact that the law differs across Australia's three largest states - New South Wales (NSW), Victoria and Queensland - leads to doctors making different decisions about withholding and withdrawing life-sustaining treatment from adults who lack capacity.
METHODS: A cross-sectional postal survey of the seven specialties most likely to be involved in end-of-life care in the acute setting was conducted between 18 July 2012 and 31 January 2013. The sample comprised all medical specialists in emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine on the AMPCo Direct database in those three Australian states. The survey measured medical specialists' level of legal compliance, and reasons for their decisions, concerning the withholding or withdrawal of life-sustaining treatment. Multivariable logistic regression was used to examine predictors of legal compliance. Linear regression was used to examine associations between the decision about life-sustaining treatment and the relevance of factors involved in making these decisions, as well as state differences in these associations.
RESULTS: Response rate was 32% (867/2702). A majority of respondents in each state said that they would provide treatment in a hypothetical scenario, despite an advance directive refusing it: 72% in NSW and Queensland; 63% in Victoria. After applying differences in state law, 72% of Queensland doctors answered in accordance with local law, compared with 37% in Victoria and 28% in NSW (p < 0.001). Doctors reported broadly the same decision-making approach despite differences in local law.
CONCLUSIONS: Law appears to play a limited role in medical decision-making at the end of life with doctors prioritising patient-related clinical and ethical considerations. Different legal frameworks in the three states examined did not lead to different decisions about providing treatment. More education is needed about law and its role in this area, particularly where law is inconsistent with traditional practice.
In most developed countries, competent patients have the legal right to refuse any medical treatment; Advance Care Planning mechanisms extend this right to non-competent patients. However, some groups, including lesbian, gay, bisexual, transgender and intersex (LGBTI) people, risk their wishes not being respected if they lose capacity, more than others. Little is known about medical practitioners' knowledge of, or attitudes to, the law in this area, especially in relation to LGBTI people, or how the law influences their decision-making. An Australian postal survey explored knowledge and attitudes of medical specialists to legal issues relating to withdrawing/ withholding life-sustaining treatment from adults without capacity. One scenario (the focus of this paper) asked which of four plausible substitute decision-makers, including a same-sex partner, had the legal authority to make such decisions. The overall response rate was 32% (867/2702). Less than one-third of respondents correctly identified the same-sex partner as the legally authorised decision-maker. LGBTI people face multiple obstacles to having their end-of-life wishes respected. Where healthcare providers are also ignorant of the partner's legal right to make such decisions, the problem is compounded. Improved legal education for clinicians and promotion of educational resources for members of the LGBTI community is needed.
OBJECTIVES: To estimate the incidence, duration and cost of futile treatment for end-of-life hospital admissions.
DESIGN: Retrospective multicentre cohort study involving a clinical audit of hospital admissions.
SETTING: Three Australian public-sector tertiary hospitals.
PARTICIPANTS: Adult patients who died while admitted to one of the study hospitals over a 6-month period in 2012.
MAIN OUTCOME MEASURES: Incidences of futile treatment among end-of-life admissions; length of stay in both ward and intensive care settings for the duration that patients received futile treatments; health system costs associated with futile treatments; monetary valuation of bed days associated with futile treatment.
RESULTS: The incidence rate of futile treatment in end-of-life admissions was 12.1% across the three study hospitals (range 6.0%–19.6%). For admissions involving futile treatment, the mean length of stay following the onset of futile treatment was 15 days, with 5.25 of these days in the intensive care unit. The cost associated with futile bed days was estimated to be $AA12.4 million for the three study hospitals using health system costs, and $A988 000 when using a decision maker’s willingness to pay for bed days. This was extrapolated to an annual national health system cost of $A153.1 million and a decision maker’s willingness to pay of $A12.3 million.
CONCLUSIONS: The incidence rate and cost of futile treatment in end-of-life admissions varied between hospitals. The overall impact was substantial in terms of both the bed days and cost incurred. An increased awareness of these economic costs may generate support for interventions designed to reduce futile treatments. We did not include emotional hardship or pain and suffering, which represent additional costs.
The recent practice in Belgium and the Netherlands of accepting addiction as a reason for performing euthanasia raises important issues for the field of addiction and the practice of euthanasia. In this paper we outline some of these issues. We also argue that physicians making decisions about whether to accept requests for euthanasia from people with an allegedly untreatable addiction should consider two issues carefully. They should ensure that: (1) the person has the capacity to give free and informed consent to undergo euthanasia; and (2) their request is the outcome of a deliberative process in which all reasonable treatment options and harm reduction measures have been offered to and considered by the person.
Background: Palliative medicine and other specialists play significant legal roles in decisions to withhold and withdraw life-sustaining treatment at the end of life. Yet little is known about their knowledge of or attitudes to the law, and the role they think it should play in medical practice. Consideration of doctors’ views is critical to optimizing patient outcomes at the end of life. However, doctors are difficult to engage as participants in empirical research, presenting challenges for researchers seeking to understand doctors’ experiences and perspectives.Aims: To determine how to engage doctors involved in end-of-life care in empirical research about knowledge of the law and the role it plays in medical practice at the end of life.Methods: Postal survey of all specialists in palliative medicine, emergency medicine, geriatric medicine, intensive care, medical oncology, renal medicine, and respiratory medicine in three Australian states: New South Wales, Victoria, and Queensland. The survey was sent in hard copy with two reminders and a follow up reminder letter was also sent to the directors of hospital emergency departments. Awareness was further promoted through engagement with the relevant medical colleges and publications in professional journals; various incentives to respond were also used. The key measure is the response rate of doctors to the survey.Results: Thirty-two percent of doctors in the main study completed their survey with response rate by specialty ranging from 52% (palliative care) to 24% (medical oncology). This overall response rate was twice that of the reweighted pilot study (16%).Conclusions: Doctors remain a difficult cohort to engage in survey research but strategic recruitment efforts can be effective in increasing response rate. Collaboration with doctors and their professional bodies in both the development of the survey instrument and recruitment of participants is essential.