Deficiencies and missed opportunities to formulate clinical guidelines in Australia for withholding or withdrawing life-sustaining treatment in severely disabled and impaired infants

This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of “best interests” but these have not yet been adopted. In particular, although courts have discounted assessment of “quality of life” as a legitimate component of determination of “best interests,” this remains a prominent component of clinical guidelines. In addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective.

Family centred care before and during life-sustaining treatment withdrawal in intensive care: a survey of information provided to families by Australasian critical care nurses

BACKGROUND: A core component of family-centred nursing care during the provision of end-of-life care in intensive care settings is information sharing with families. Yet little is known about information provided in these circumstances.

OBJECTIVE: To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life-sustaining treatment.

DESIGN: An online cross-sectional survey.

METHODS: During May 2015, critical care nurses in Australia and New Zealand were invited to complete the Preparing Families for Treatment Withdrawal questionnaire. Data analysis included descriptive statistics to identify areas of information most and least frequently shared with families. Cross tabulations with demographic data were used to explore any associations in the data.

RESULTS: From the responses of 159 critical care nurses, information related to the emotional care and support of the family was most frequently provided to families in preparation for and during withdrawal of life-sustaining treatment. Variation was noted in the frequency of provision of information across body systems and their associated physical changes during the dying process. Significant associations (p<0.05) were identified between the variables gender, nursing experience and critical care experiences and some of the information items most and least frequently provided.

CONCLUSIONS: The provision of information during end-of-life care reflects a family-centred care approach by critical care nurses with information pertaining to emotional care and support of the family paramount. The findings of this study provide a useful framework for the development of interventions to improve practice and support nurses in communicating with families at this time.

Clinical, ethical and legal considerations in the treatment of newborns with non-ketotic hyperglycinaemia

Non-ketotic hyperglycinaemia (NKH) is a devastating neurometabolic disorder leading, in its classical form, to early death or severe disability and poor quality of life in survivors. Affected neonates may need ventilatory support during a short period of respiratory depression. The transient dependence on ventilation dictates urgency in decision-making regarding withdrawal of therapy. The occurrence of patients with apparent transient forms of the disease, albeit rare, adds uncertainty to the prediction of clinical outcome and dictates that the current practice of withholding or withdrawing therapy in these neonates be reviewed. Both bioethics and law take the view that treatment decisions should be based on the best interests of the patient. The medical-ethics approach is based on the principles of non-maleficence, beneficence, autonomy and justice. The law relating to withholding or withdrawing life-sustaining treatment is complex and varies between jurisdictions. Physicians treating newborns with NKH need to provide families with accurate and complete information regarding the disease and the relative probability of possible outcomes of the neonatal presentation and to explore the extent to which family members are willing to take part in the decision making process. Cultural and religious attitudes, which may potentially clash with bioethical and juridical principles, need to be considered.

Legal issues: minors' decision-making capacity to refuse life-saving and life-sustaining treatment: legal and psychiatric perspectives

Laws in Belgium and the Netherlands permit euthanasia and assisted suicide for seriously ill children who experience "constant and unbearable suffering" – they have the capacity to request death by lethal injection if they convey a "reasonable understanding of the consequences" of that request. The child's capacity to understand death is therefore a prerequisite to the implementation of the request. However, modern neuro-psychological and fMRI (functional Magnetic Resonance Imaging) studies of the relationship between the neuro-anatomical development of the brain in human beings and their emotional and experiential capacity, demonstrates that both are not fully developed until the early 20s for girls and mid-20s for boys. Unlike Belgium and the Netherlands, the clinical and legal implications of the immaturity of the brain on medical decision-making of minors, in particular life and death decisions, have been implicit in the Australian courts' approach to the refusal of life-saving and life-sustaining treatment by minors. This approach is exemplified by X v Sydney Children's Hospitals Network [2013] NSWCA 320 (and a series of earlier cases).

An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care

AIM: To conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care.

BACKGROUND: End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process.

DESIGN: Integrative literature review.

DATA SOURCES: MEDLINE, CINAHL Plus, PsychINFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000 - May 2015.

REVIEW METHODS: A five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organised and analysed. Convergent qualitative thematic synthesis was used.

RESULTS: From an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative (n=15); quantitative (n=4); mixed methods (n=2); case study (n=2); and discourse analysis (n=1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories.

CONCLUSION: Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualisation of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family centred end-of-life care is required making the nursing contribution at this time more visible.

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.

Advance directives and the persistent vegetative state in Victoria: a human rights perspective

With advances in medical technology, it is now possible to sustain the life of a person in a persistent vegetative state (PVS) until a decision is made to withhold or withdraw life-sustaining treatment. Who makes that decision? Under the Medical Treatment Act 1988 (Vic) there is no legally enforceable right for a person to choose, in advance, what intervention that person will and will not accept if he or she ends up in a PVS. The best that can be achieved is that a person can appoint an agent who is empowered to refuse medical treatment on the person's behalf in the event of incompetence. It is suggested that this mechanism ignores two fundamental human rights: self-determination and the inherent right to dignity. This article proposes the development of an advance directive mechanism that provides for a person to refuse, in advance, specified intervention, thereby respecting fundamental human rights and alleviating the existing need for an agent to second-guess a person's desires and best interests.

Cutting the cord: Can society over-invest in extremely premature and critically impaired neonates?

This article provides a critical examination of the allocation of scarce public health care funds in relation to extremely premature and sick neonates. Decisions to withdraw or withhold life-sustaining treatment from neonates born extremely premature are generally informed by arbitrary and often subjective considerations of those involved in their care – namely parents and medical practitioners. This article argues for a sharp and immediate focus in decisions to treat such neonates based on the allocation of limited health care resources. Accordingly, decisions to save and preserve the lives of imperilled neonates should not be limited to the immediate financial costs of medical treatment. More explicitly there should be a full appreciation of the cost of disability to the family, requirements for long-term care, and the benefits and associated costs of life, not only to the patient, but also to society.

Playing their part: the role of physical activity and sport in sustaining the health and well being of small rural communities

It is widely recognised that the health of rural Australians is poor in comparison with their urban counterparts. Similarly, the role played by physical activity in maintaining health has been well researched and is well documented. However, little appears to have been published in recent years about the links between physical activity and health in rural communities. The objective of this article was to begin to address that gap. To achieve this, the article drew on research conducted in two small rural communities in Victoria Australia, and highlighted the role that physical activity and sport played in sustaining the health and wellbeing of individuals and communities in rural areas. Taking the World Health Organisation's definition of health (a state of complete physical, mental and social well-being and not merely the absence of disease) as its measure, the paper highlighted the many ways in which physical activity and sport in rural communities contribute to physical health, mental wellbeing and social cohesiveness. Based this finding, the authors suggest that physical activity and sport make a significant contribution to the health and wellbeing of rural people and their communities and suggest that further research is necessary to better define this apparent contribution.

Depression and expression: life begins on the other side of despair

This paper has two parts. In Part I, it consists of a letter written by the subject of the ‘case study’ that forms the basis of Part II. Part I demonstrates how the writer Aliki Pavlou discovered that, in attempting to help a friend face uncomfortable truths in relation to his perception of his mother, she inadvertently was able to voice her own dilemma in relation to her mother that hitherto had been elusive.
This paper forms a part of a larger project being researched by Aliki Pavlou, Justin Clemens and me. The study, to be entitled, "In the Heart of Hell: Depression and its Expression," is one that contends that Literature expresses the ineffable nature of depression in its symbolic mode; that, indeed, literary texts reveal in their concealment. The work therefore argues that ‘depression’ is expressible.
Part II of this paper analyses the response of a depressive to Jean-Paul Sartre’s novel Nausea (1964). Beginning with a brief discussion of the role of the ‘mother’ as psychologically pivotal in some depressives’ struggle towards well-being, this section analyses a reading of Nausea by a depressive. The objective of this study was to ascertain the extent to which the condition of nausea, as represented in Sartre’s novel, expresses the experience of depression.

Not the same : a comparison of female and male clients seeking treatment from problem gambling counselling services

Previous studies of problem gamblers portray this group as being almost exclusively male. However, this study demonstrates that females comprised 46% of the population (n = 1,520) of persons who sought assistance due to concerns about their gambling from the publicly-funded BreakEven counselling services in the state of Victoria, Australia, in one 12-month period. This suggests that the model of service delivery which is community based counselling on a non-residential basis may be better able to attract female clients than treatment centres where males predominate such as veterans centres. A comparative analysis of the social and demographic characteristics of female and male gamblers within the study population was undertaken. As with previous studies, we have found significant differences between males and females who have sought help for problems associated with their gambling. Gender differences revealed in this study include females being far more likely to use electronic gaming machines (91.1% vs. 61.4%), older (39.6 years vs. 36.1 years), more likely to be born in Australia (79.4% vs. 74.7%), to be married (42.8% vs. 30.2%), living with family (78.9% vs. 61.5%) and to have dependent children (48.4% vs. 35.7%), than males who present at these services. Female gamblers (A$7,342) reported average gambling debts of less than half of that owed by males (A$19,091). These gender differences have implications for the development and conduct of problem gambling counselling services as it cannot be assumed that models of service which have demonstrated effectiveness with males will be similarly effective with females.

Ischaemic heart disease and Australian immigrants: the influence of birthplace and language skills on treatment and use of health services

Admission rates for ischaemic heart disease (IHD), and the use of invasive cardiovascular procedures, separation mode and length of stay (LOS) were compared between Australians from non-English speaking background (NESB; n=8627) and English speaking background (ESB; n=13162) aged 20 years and over admitted to Victorian urban public hospitals. The study covered the period from 1993 to 1998. It was found that, compared with their ESB counterparts, the incidence of admission for acute myocardial infarction was significantly higher for NESB men and women before and after controlling for confounding factors. The age-adjusted ratios for NESB women compared with their ESB counterparts ranged from 1.23 to 1.89 for cardiac catheterisation, from 0.23 to 0.27 for percutaneous transluminal coronary angioplasty (PTCA), and from 1.04 to 1.80 for coronary artery bypass grafting (CABG).
Procedure rates were comparable in men for cardiac catheterisation and CABG but higher for PTA rates in NESB men (OR: 1.29, 95%CI: 1.11-1.50) than their ESB counterparts. Both NESB men (β=0.04, 95%CI: 0.01-0.07) and women (β=0.03, 95%CI: 0.02-0.08) experienced significantly longer hospital stays than their ESB counterparts. These findings indicate there may be systematic differences in patients’ treatment and service utilisation in Victorian public hospitals. The extent to which physicians’ bias and
patients’ choice could explain these differences requires further investigation.

Cost-effectiveness of dexamphetamine and methylphenidate for the treatment of childhood attention deficit hyperactivity disorder

Objective: To analyze from a health sector perspective the cost-effectiveness of dexamphetamine (DEX) and methylphenidate (MPH) interventions to treat childhood attention deficit hyperactivity disorder (ADHD), compared to current practice.

Method: Children eligible for the interventions are those aged between 4 and 17 years in 2000, who had ADHD and were seeking care for emotional or behavioural problems, but were not receiving stimulant medication. To determine health benefit, a meta-analysis of randomized controlled trials was performed for DEX and MPH, and the effect sizes were translated into utility values. An assessment on second stage filter criteria ('equity', 'strength of evidence', 'feasibility' and 'acceptability to stakeholders') is also undertaken to incorporate additional factors that impact on resource allocation decisions. Simulation modelling techniques are used to present a 95% uncertainty interval (UI) around the incremental costeffectiveness ratio (ICER), which is calculated in cost (in A$) per DALY averted.

Results: The ICER for DEX is A$4100/DALY saved (95% UI: negative to A$14 000) and for MPH is A$15 000/DALY saved (95% UI: A$9100-22 000). DEX is more costly than MPH for the government, but much less costly for the patient.

Conclusions: MPH and DEX are cost-effective interventions for childhood ADHD. DEX is more cost-effective than MPH, although if MPH were listed at a lower price on the Pharmaceutical Benefits Scheme it would become more cost-effective. Increased uptake of stimulants for ADHD would require policy change. However, the medication of children and wider availability of stimulants may concern parents and the community.