End-of-life decision making for older people

This chapter deals with the increasing issues surrounding end-of-life decision making. As the life trajectory for older people changes, the need for open discussion about their health problems and treatment becomes more critical. Acceptance of the ageing process itself is often not easy so the matter of a good death is even more distressing for some people to consider. The vignette provides an excellent discussion on the need for open dialogue with the older person and their families, whether they are acutely ill or have chronic health problems. How a person wishes to be treated when quality of life is not going to improve, no matter what interventions are put in place, seems essential for person-centred care. The issue of competency is one that must be determined before any decision is made by any person involved in care.

End of Life Decision Making and Palliative Care

1. An emergency department attendance represents an opportunity to set goals for care during the attendance and beyond. 2. End of life discussions and advance care planning assist early decision-making about treatment goals and end of life care. 3. Knowledge of the law assists decision-making at the end of life. 4. Not all dying patients require the skill set of a palliative care specialist but every dying patient will benefit from a palliative approach. 5. Palliative care does not preclude active treatment where the intent is understood by patient and family. 6. Failure to diagnose dying can compromise patient care. 7. The emergency department should foster close relationships with local specialist palliative care providers to improve and ensure timely access for patients and families and so that emergency staff have access to the knowledge and skills provided.

Autonomy versus futility? Barriers to good clinical practice in end-of-life care : a Queensland case

Findings from a Queensland coronial inquest highlight the complex clinical, ethical and legal issues that arise in end-of-life care when clinicians and family members disagree about a diagnosis of clinical futility. The tension between the law and best medical practice is highlighted in this case, as doctors are compelled to seek family consent to not commence a futile intervention. Good communication between doctors and families, as well as community and professional education, is essential to resolve tensions that can arise when there is disagreement about treatment at the end of life.

Should law have a role in end-of-life care?

What do physicians think of law? Do they know the law? What role does it have in the provision of end-of-life care? Physicians in New South Wales, Victoria and Queensland are being asked about these issues in a study by the Queensland University of Technology entitled ‘Withholding and withdrawing life-sustaining treatment from adults who lack capacity: The role of law in medical practice’. This research aims to examine the role that law plays in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity.

Withholding and withdrawal of ‘futile’ life-sustaining treatment : unilateral medical decision-making in Australia and New Zealand

This article examines the law in Australia and New Zealand that governs the withholding and withdrawal of ‘futile’ life-sustaining treatment. Although doctors have both civil and criminal law duties to treat patients, those general duties do not require the provision of treatment that is deemed to be futile. This is either because futile treatment is not in a patient’s best interests or because stopping such treatment does not breach the criminal law. This means, in the absence of a duty to treat, doctors may unilaterally withdraw or withhold treatment that is futile; consent is not required. The article then examines whether this general position has been altered by statute. It considers a range of suggested possible legislation but concludes it is likely that only Queensland’s adult guardianship legislation imposes a requirement to obtain consent to withhold or withdraw such treatment.

Guest editorial: End of life law, ethics, policy and practice

The International Conference on End of Life: Law, Ethics, Policy and Practice was held at Queensland University of Technology, Brisbane, Australia in August 2014. It was co-hosted by the Australian Centre for Health Law Research, the Dalhousie Health Law Institute (Canada) and the Tsinghua Health Law Research Center (China). The conference attracted almost 350 delegates from 26 countries and included representation from over a dozen different disciplines with an interest in end of life care.

Prosecutorial guidelines for voluntary euthanasia and assisted suicide : autonomy, public confidence and high quality decision-making

This article proposes offence-specific guidelines for how prosecutorial discretion should be exercised in cases of voluntary euthanasia and assisted suicide. Similar guidelines have been produced in England and Wales but we consider them to be deficient in a number of respects, including that they lack a set of coherent guiding principles. In light of these concerns, we outline an approach to constructing alternative guidelines that begins with identifying three guiding principles that we argue are appropriate for this purpose: respect for autonomy, the need for high quality prosecutorial decision-making and the importance of public confidence in that decision-making.

How should Australia regulate voluntary euthanasia and assisted suicide?

The purpose of this paper is to provide a basis from which to start an informed and rational dialogue in Australia about voluntary euthanasia (VE) and assisted suicide (AS). It does this by seeking to chart the broad landscape of issues that can be raised as relevant to how this conduct should be regulated by the law. It is not our purpose to persuade. Rather, we have attempted to address the issues as neutrally as possible and to canvass both sides of the argument in an even-handed manner. We hope that this exercise places the reader in a position to consider the question posed by this paper: How should Australia regulate voluntary euthanasia and assisted suicide? In line with the approach taken in the paper, this question does not take sides in the debate. It simply asks how VE and AS should be regulated, acknowledging that both prohibition and legalisation of such conduct involve regulation. We begin by considering the wider legal framework that governs end of life decision-making. Decisions to withhold or withdraw life-sustaining treatment that result in a person’s death can be lawful. This could be because, for example, a competent adult refuses such treatment. Alternatively, stopping or not providing treatment can be lawful when it is no longer in a person’s best interests to receive it. The law also recognises that appropriate palliative care should not attract criminal responsibility. By contrast, VE and AS are unlawful in Australia and could lead to prosecution for crimes such as murder, manslaughter or aiding and abetting suicide. But this is not to say that such conduct does not occur in practice. Indeed, there is a body of evidence that VE and AS occur in Australia, despite them being unlawful. There have been repeated efforts to change the law in this country, mainly by the minor political parties. However, apart from a brief period when VE and AS was lawful in the Northern Territory, these attempts to reform the law have been unsuccessful. The position is different in a small but increasing number of jurisdictions overseas where such conduct is lawful. The most well known is the Netherlands but there are also statutory regimes that regulate VE and/or AS in Belgium and Luxembourg in Europe, and Oregon and Washington in the United States. A feature of these legislative models is that they incorporate review or oversight processes that enable the collection of data about how the law is being used. As a result, there is a significant body of evidence that is available for consideration to assess the operation of the law in these jurisdictions and some of this is considered briefly here. Assisting a suicide, if done for selfless motives, is also legal in Switzerland, and this has resulted in what has been referred to as ‘euthanasia tourism’. This model is also considered. The paper also identifies the major arguments in favour of, and against, legalisation of VE and AS. Arguments often advanced in favour of law reform include respect for autonomy, that public opinion favours reform, and that the current law is incoherent and discriminatory. Key arguments against legalising VE and AS point to the sanctity of life, concerns about the adequacy and effectiveness of safeguards, and a ‘slippery slope’ that will allow euthanasia to occur for minors or for adults where it is not voluntary. We have also attempted to step beyond these well trodden and often rehearsed cases ‘for and against’. To this end, we have identified some ethical values that might span both sides of the debate and perhaps be the subject of wider consensus. We then outline a framework for considering the issue of how Australia should regulate VE and AS. We begin by asking whether such conduct should be criminal acts (as they presently are). If VE and AS should continue to attract criminal responsibility, the next step is to enquire whether the law should punish such conduct more or less than is presently the case, or whether the law should stay the same. If a change is favoured as to how the criminal law punishes VE and AS, options considered include sentencing reform, creating context-specific offences or developing prosecutorial guidelines for how the criminal justice system deals with these issues. If VE and AS should not be criminal acts, then questions arise as to how and when they should be permitted and regulated. Possible elements of any reform model include: ensuring decision-making is competent and voluntary; ascertaining a person’s eligibility to utilise the regime, for example, whether it depends on him or her having a terminal illness or experiencing pain and suffering; and setting out processes for how any decision must be made and evidenced. Options to bring about decriminalisation include challenging the validity of laws that make VE and AS unlawful, recognising a defence to criminal prosecution, or creating a statutory framework to regulate the practice. We conclude the paper where we started: with a call for rational and informed consideration of a difficult and sensitive issue. How should Australia regulate voluntary euthanasia and assisted suicide?

How should Australia regulate voluntary euthanasia and assisted suicide?

This paper invites consideration of how Australia should regulate voluntary euthanasia and assisted suicide. We have attempted to pose this question as neutrally as possible, acknowledging that both prohibition and legalisation of such conduct involve decisions about regulation. We begin by charting the wider field of law at the end of life, before considering the repeated, but ultimately unsuccessful, attempts at law reform in Australia. The situation in Australia is contrasted with permissive jurisdictions overseas where voluntary euthanasia and/or assisted suicide are lawful. We consider the arguments for and against legalisation of such conduct along with the available empirical evidence as to what happens in practice both in Australia and overseas. The paper concludes by outlining a framework for deliberating on how Australia should regulate voluntary euthanasia and assisted suicide. We ask a threshold question of whether such conduct should be criminal acts (as they presently are), the answer to which then leads to a range of possible regulatory options.

End-of-life care practices of critical care nurses: A national cross-sectional survey

Background: The critical care context presents important opportunities for nurses to deliver skilled, comprehensive care to patients at the end of life and their families. Limited research has identified the actual end-of-life care practices of critical care nurses. Objective: To identify the end-of-life care practices of critical care nurses. Design: A national cross-sectional online survey. Methods: The survey was distributed to members of an Australian critical care nursing association and 392 critical care nurses (response rate 25%) completed the survey. Exploratory factor analysis using principal axis factoring with oblique rotation was undertaken on survey responses to identify the domains of end-of-life care practice. Descriptive statistics were calculated for individual survey items. Results: Exploratory factor analysis identified six domains of end-of-life care practice: information sharing, environmental modification, emotional support, patient and family centred decision-making, symptom management and spiritual support. Descriptive statistics identified a high level of engagement in information sharing and environmental modification practices and less frequent engagement in items from the emotional support and symptom management practice areas. Conclusions: The findings of this study identified domains of end-of-life care practice, and critical care nurse engagement in these practices. The findings highlight future training and practice development opportunities, including the need for experiential learning targeting the emotional support practice domain. Further research is needed to enhance knowledge of symptom management practices during the provision of end-of-life care to inform and improve practice in this area.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 1 (New South Wales)

This is the first article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in New South Wales. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in New South Wales.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 2 (Queensland)

This is the second article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Queensland, including the parens patriae jurisdiction of the Supreme Court. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance health directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Queensland.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : part 3 (Victoria)

This is the final article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Victoria. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training that medical professionals receive on issues such as refusal of treatment certificates and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Victoria. The article also draws together themes from the series as a whole, including conclusions about the need for more and better medical education and about law reform generally.

Doctors' knowledge of the law on withholding and withdrawing life-sustaining medical treatment

Objectives To examine the level of knowledge of doctors about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity, and factors associated with a higher level of knowledge. Design, setting and participants Postal survey of all specialists in emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine on the AMPCo Direct database in New South Wales, Victoria and Queensland. Survey initially posted to participants on 18 July 2012 and closed on 31 January 2013. Main outcome measures Medical specialists’ levels of knowledge about the law, based on their responses to two survey questions. Results Overall response rate was 32%. For the seven statements contained in the two questions about the law, the mean knowledge score was 3.26 out of 7. State and specialty were the strongest predictors of legal knowledge. Conclusions Among doctors who practise in the end-of-life field, there are some significant knowledge gaps about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity. Significant consequences for both patients and doctors can flow from a failure to comply with the law. Steps should be taken to improve doctors’ legal knowledge in this area and to harmonise the law across Australia.

Withholding and withdrawing life-sustaining treatment : criminal responsibility for established medical practice?

The law recognises the right of a competent adult to refuse medical treatment even if this will lead to death. Guardianship and other legislation also facilitates the making of decisions to withhold or withdraw life-sustaining treatment in certain circumstances. Despite this apparent endorsement that such decisions can be lawful, doubts have been raised in Queensland about whether decisions to withhold or withdraw life-sustaining treatment would contravene the criminal law, and particularly the duty imposed by the Criminal Code (Qld) to provide the “necessaries of life”. This article considers this tension in the law and examines various arguments that might allow for such decisions to be made lawfully. It ultimately concludes, however, that criminal responsibility may still arise and so reform is needed.