Roman concept of mental capacity to make end-of-life decisions

When assessing decisional competence of patients, psychiatrists have to balance the patients' right to personal autonomy, their condition and wishes against principles of medical ethics and professional discretion. This article explores the age-old legal and ethical dilemmas posed by refusal of vital medical treatment by patients and their mental capacity to make end-of-life decisions against the background of philosophical, legal and medical approaches to these issues in the time of the Younger Pliny (c62–c113 CE). Classical Roman discourse regarding mental competency and "voluntary death" formed an important theme of the vast corpus of Greco-Roman writings, which was moulded not only by legal permissibility of suicide but also by philosophical (in modern terms, moral or ethical) considerations. Indeed, the legal and ethical issues of evaluating the acceptability of end of life decisions discussed in the Letters are as pertinent today as they were 2000 years ago. We may gain valuable insights about our own methodologies and frames of reference in this area of the law and psychiatry by examining Classical Roman approaches to evaluating acceptability of death-choices as described in Pliny's Letters and the writings of some of his peers.

False memories for end-of-life decisions

Objective: To examine people’s false memories for end-of-life decisions. Design: In Study 1, older adults decided which life-sustaining treatments they would want if they were seriously ill. They made these judgments twice, approximately 12 months apart. At Time 2, older adults and their self-selected surrogate decision makers tried to recall the older adults’ Time 1 decisions. In Study 2, younger adults made treatment decisions twice, approximately 4 months apart. At Time 2, younger adults tried to recall their Time 1 decisions. Main Outcome Measures: Percentage of participants who falsely remembered that their original treatment decisions were the same as their current decisions. Results: In Study 1, older adults falsely remembered that 75% of their original decisions were the same as their current decisions; surrogates falsely thought that 86% of older adults’ decisions were the same. In Study 2, younger adults falsely remembered that 69% of their original decisions were the same as their current decisions. Conclusion: Age alone cannot account for people’s false memories of their end-of-life decisions; we discuss other mechanisms. The results have practical implications for policies that encourage people to make legal documents specifying their end-of-life treatment decisions.

Critically impaired infants and end of life decision making : resource allocation and difficult decisions

Decisions to withdraw or withhold life-sustaining treatment are contentious, and offer difficult moral dilemmas to both medical practitioners and the judiciary. This issue is exacerbated when the patient is unable to exercise autonomy and is entirely dependent on the will of others.This book focuses on the legal and ethical complexities surrounding end of life decisions for critically impaired and extremely premature infants. Neera Bhatia explores decisions to withdraw or withhold life-sustaining treatment from critically impaired infants and addresses the controversial question, which lives are too expensive to treat? Bringing to bear such key issues as clinical guidance, public awareness, and resource allocation, the book provides a rational approach to end of life decision making, where decisions to withdraw or withhold treatment may trump other competing interests.The book will be of great interest and use to scholars and students of bioethics, medical law, and medical practitioners.

End of life clinician-family communication in ICU: a retrospective observational study - implications for nursing

Objective: The objective of this study was to identify practice issues that influence end of life communication and care of patients and families in the intensive care unit (ICU).

Design: This study used a retrospective observational approach utilising a medical record review. Setting: An Australian metropolitan mixed medical/surgical ICU. Subjects: There are two parts to this study. The first part related to all of the patients who died in the ICU in one calendar year, a total of 97. The second part of this study related to a random selection of 25% of these patients, a total of 24.

Results: This study showed that death in the ICU was often anticipated, and that whilst communication between family and medical personnel was evident in the medical record, the involvement or occurrence of communication between the nurse and the family was not recorded, and that nurses were included in only 25% of formal family meetings.

Conclusion: Whilst this study confirmed that death is often predicted for critically ill patients, and opportunities for communication with the family or next of kin assists to achieve consensus on end of life decisions, the involvement of nurses, as primary care-givers is not well represented in the medical record, thus undermining the importance of the nurses role in direct patient care that extends to the family in the ICU.

Current negative mood encourages changes in end-of-life treatment decisions and is associated with false memories

To investigate the effects of mood on people’s end-of-life treatment decisions and their false memories of those decisions, participants took part in two sessions. At Time 1, participants were experimentally induced into positive or negative moods. They decided whether they would want to receive or refuse treatments in a range of hypothetical medical scenarios, such as tube feeding while in a coma. Four weeks later, at Time 2, participants were induced into the same or the opposite mood and made these decisions a second time. They also recalled their previous decisions. Participants in negative moods at Time 2 changed more of their current decisions and falsely remembered more of their previous decisions than participants in positive moods. These findings suggest that people’s current moods influence whether they change their treatment decisions; current decisions in turn bias recall of past decisions

Diabetes and end-of-life care: ethical issues, practices and challenges

Abstract:
Diabetes is the most significant chronic disease and the global prevalence is increasing. Diabetes is associated with debilitating long term complications and other comorbidities that cause high rates of morbidity and mortality. Keeping blood glucose and other metabolic parameters within an acceptable, personalised range is important to comfort and quality of life but can be challenging, especially during end-of-life care. Guidelines can help clinicians make appropriate care decisions; however, there is little research about what constitutes best practice diabetes care at the end-of-life: existing recommendations and guidelines blend the best available evidence with consensus opinion. In addition, there are important ethical and methodological considerations concerning research involving vulnerable people at the end-of-life. Chapter 3 describes the ethical and methodological issues that needed to be considered when developing guidelines for managing diabetes at the end-of-life and the contribution interviews with dying people and their family carers made to developing a guiding philosophy and to person-centred guidelines.

Information needs of family carers of people with diabetes at the end of life: a literature review

Background:
Recent research identified the issue that family carers of people with diabetes at the end of life (EOL) did not receive sufficient information to enable them to help their relative manage their diabetes at the EOL.

Aim:
The aim of the current study was to undertake a literature review to identify the information needs of family carers of people with diabetes at the EOL.

Method:
A comprehensive review of the literature was conducted by searching the following databases: CINAHL, PubMed, PsychInfo, Scopus, and SocINDEX. The grey literature was also searched for papers relevant to the aim. All study designs were included. A content analysis of relevant papers was undertaken to identify themes.

Results:
Sixteen of the more than 300 papers identified addressed the information needs of family carers of people with diabetes at the EOL and were included in the review. Five key themes were identified from the papers reviewed: (1) performing diabetes care tasks, (2) focus of care, (3) blood glucose management, (4) EOL stages, and (5) involving patients and family carers in decisions about diabetes care. Most of the 16 papers represented the views of health professionals and focused on the need to provide information about the medical aspects of diabetes management.

Conclusions:The review suggests further research is needed to identify the information needs of family carers of people with diabetes at the EOL to enable interventions to be developed to support the family carers and meet their unique information needs.

The study protocol of: 'initiating end of life care in stroke: clinical decision- making around prognosis'

 Background: The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.
Methods/design: This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.
Discussion: This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

‘Moral luck’ and the question of autonomy, choice, and control in end-of-life decision making

It is commonly assumed that, in the realm of ethical decision making at the end-of-life, ‘luck’ and ‘risk’ do not intrude. Nonetheless ‘moral luck’ (where happenstance makes a moral difference) does intrude and can have an unanticipated impact on the ultimate moral outcomes of end-of-life care. In the interests of upholding the ethical standards of end-of-life care, healthcare providers have increasingly relied on ethical principlism as a rational decision-guiding frame in the sincere belief that such an approach will enable patient selfdetermination and control over treatment decisions when needing end-of-life care. Due to contextual variables and associated uncertainties in end-of-life care, however, the intended moral outcomes of appeals to commonly accepted ethical principles (in particular the principle of autonomy) are not always realized. What is not always appreciated is that whether ‘good’ or ‘bad’ moral outcomes are achieved can be as much a matter of chance as of choice. This essay explores the relevance and possible implications of moral luck in end-of-life decision making and care. A key conclusion of the paper is that the notion of moral luck needs to be taken seriously in end-of-life care contexts since it can have an unanticipated impact on the outcomes of the decisions that are made and thereby on the moral interests of patients facing the end of their lives.

Costs and advance directives at the end of life: a case of the ‘Coaching Older Adults and Carers to have their preferences Heard (COACH)’ trial

BACKGROUND: Total costs associated with care for older people nearing the end of life and the cost variations related with end of life care decisions are not well documented in the literature. Healthcare utilisation and associated health care costs for a group of older Australians who entered Transition Care following an acute hospital admission were calculated. Costs were differentiated according to a number of health care decisions and outcomes including advance directives (ADs).

METHODS: Study participants were drawn from the Coaching Older Adults and Carers to have their preferences Heard (COACH) trial funded by the Australian National Health and Medical Research Council. Data collected included total health care costs, the type of (and when) ADs were completed and the place of death. Two-step endogenous treatment-regression models were employed to test the relationship between costs and a number of variables including completion of ADs.

RESULTS: The trial recruited 230 older adults with mean age 84 years. At the end of the trial, 53 had died and 80 had completed ADs. Total healthcare costs were higher for younger participants and those who had died. No statistically significant association was found between costs and completion of ADs.

CONCLUSION: For our frail study population, the completion of ADs did not have an effect on health care utilisation and costs. Further research is needed to substantiate these findings in larger and more diverse clinical cohorts of older people.

Barriers, enablers and challenges to initiating end-of-life care in an Australian intensive care unit context.

BACKGROUND: Patients admitted to Australian intensive care units are often critically unwell, and present the challenge of increasing mortality due to an ageing population. Several of these patients have terminal conditions, requiring withdrawal of active treatment and commencement of end-of-life (EOL) care. OBJECTIVES: The aim of the study was to explore the perspectives and experiences of physicians and nurses providing EOL care in the ICU. In particular, perceived barriers, enablers and challenges to providing EOL care were examined. METHODS: An interpretative, qualitative inquiry was selected as the methodological approach, with focus groups as the method for data collection. The study was conducted in Melbourne, Australia in a 24-bed ICU. Following ethics approval intensive care physicians and nurses were recruited to participate. Focus group discussions were discipline specific. All focus groups were audio-recorded then transcribed for thematic data analysis. RESULTS: Five focus groups were conducted with 11 physicians and 17 nurses participating. The themes identified are presented as barriers, enablers and challenges. Barriers include conflict between the ICU physicians and external medical teams, the availability of education and training, and environmental limitations. Enablers include collaboration and leadership during transitions of care. Challenges include communication and decision making, and expectations of the family. CONCLUSIONS: This study emphasised that positive communication, collaboration and culture are vital to achieving safe, high quality care at EOL. Greater use of collaborative discussions between ICU clinicians is important to facilitate improved decisions about EOL care. Such collaborative discussions can assist in preparing patients and their families when transitioning from active treatment to initiation of EOL care. Another major recommendation is to implement EOL care leaders of nursing and medical backgrounds, and patient support coordinators, to encourage clinicians to communicate with other clinicians, and with family members about plans for EOL care.

From music to silence: an exploration of music-thanatology vigils at end of life

Research in Australia into use of music-thanatology, evaluating provision of harp music in vigils with palliative care patients in a hospice. The concept of music-thanatology is outlined, and the findings of the study in alleviating suffering and creating tranquil environments are reported.