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.

Modelling end-of-life care practices: Factors associated with critical care nurse engagement in care provision

Objective To identify factors associated with critical care nurses’ engagement in end-of-life care practices. Methods Multivariable regression modelling was undertaken on 392 responses to an online self-report survey of end-of-life care practices and factors influencing practice by Australian critical care nurses’. Univariate general linear models were built for six end-of-life care practice areas. Results Six statistically significant (p < 0.001) models were developed: Information sharing F(3, 377) = 40.53, adjusted R2 23.8%; Environmental modification F(5, 380) = 19.55, adjusted R2 19.4%; Emotional support F(10, 366) = 12.10, adjusted R2 22.8%; Patient and family centred decision making F(8, 362) = 17.61 adjusted R2 26.4%; Symptom management F(8, 376) = 7.10, adjusted R2 11.3%; and Spiritual support F(9, 367) = 14.66, adjusted R2 24.6%. Stronger agreement with values consistent with a palliative approach, and greater support for patient and family preferences were associated with higher levels of engagement in end-of-life care practices. Higher levels of preparedness and access to opportunities for knowledge acquisition were associated with engagement in the interpersonal practices of patient and family centred decision making and emotional support. Conclusion This study provides evidence for interventions to address factors associated with nurse engagement to increase participation in all end-of-life care practice areas.

End-of-life care pathways for improving outcomes in caring for the dying

This is an updated version of a Cochrane review published in Issue 11, 2013 in the Cochrane Library. In many clinical areas, integrated care pathways are utilised as structured multidisciplinary care plans that detail essential steps in caring for patients with specific clinical problems. In particular, care pathways for the dying have been developed as a model to improve care of patients who are in the last days of life. The care pathways were designed with an aim of ensuring that the most appropriate management occurs at the most appropriate time, and that it is provided by the most appropriate health professional. Since the last update, there have been sustained concerns about the safety of implementing end-of-life care pathways, particularly in the United Kingdom (UK). Therefore, there is a significant need for clinicians and policy makers to be informed about the effects of end-of-life care pathways via a systematic review.

Futility and the law: Knowledge, practice and attitudes of doctors in end of life care

Despite the potential harm to patients (and others) and the financial cost of providing futile treatment at the end of life, this practice occurs. This article reports on empirical research undertaken in Queensland that explores doctors’ perceptions about the law that governs futile treatment at the end of life, and the role it plays in medical practice. The findings reveal that doctors have poor knowledge of their legal obligations and powers when making decisions about withholding or withdrawing futile treatment at the end of life; their attitudes towards the law were largely negative; and the law affected their clinical practice and had or would cause them to provide futile treatment.

Social ecological influences on preferences for care provided at the end of life amongst Taiwanese city-dwelling adults

Social and cultural elements are an essential part of the contexts within which people understand their word and make end-of-life decisions. A developmental social ecological model was used in this thesis to provide a comprehensive framework for examining influences on end-of-life preferences. The findings support claims made by social ecologists that individual's health-related choices can be influenced by cultural, social contextual and environmental factors over the course of life. The results of this study have implications for health professionals and the practices they can adopt to enhance end-of-life 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.

Building community capacity for end of life : an investigation of community capacity and its implications for health-promoting palliative care in the Australian Capital Territory

This study identified and examined community-based activities around death, dying and end-of-life care which might reflect a health-promoting palliative care (HPPC) philosophy. This approach is argued to restore community ownership of, and agency in, dying and death through the building of community capacity. However, the enactment of the HPPC approach has not been extensively examined in Australia. Current understandings of community capacity-building relating to end of life are orientated toward service provision. A qualitative interpretive approach was used to engage with local community groups in the Australian Capital Territory with an interest in death, dying and end-of-life care. Data were collected from ten in-depth, semi-structured interviews and thematically analysed. The themes of Practical Support, Respect and Responsiveness and Connection and Empowerment were identified, reflecting community activities initiated in response to the experience of life-limiting illness. Building community capacity offers to restore community agency in end-of-life concerns, while potentially enhancing health service provision through collaborative partnerships. This study indicates an existing community capacity, demonstrated by activities that promote socialisation, peer support and normalisation of death and dying. However, as these activities occur primarily in response to illness, proactive and preparatory interventions in HPPC are a priority.

Informal caring networks for people at end of life: Building social capital in Australian communities

The care of a person living at home near the end of their life is predominantly provided by family carers with the support of health services such as palliative care. In addition, informal caring networks also contribute at times to the support to the dying person and their carer. In this way, these networks can promote social capital in the communities from which they are drawn. This social approach to end of life care enhances community capacity to provide support to those dying at home and their carers. This article examines relevant published literature to explore the conceptual foundations of informal caring networks, examining the place of social capital and community development in the provision of end of life care at home, particularly in the Australian context.

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.

On resilience and acceptance in the transition to palliative care at the end of life

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

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.

Neonatal palliative care attitude scale : development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing

OBJECTIVE The aim of this research project was to obtain an understanding of the barriers to and facilitators of providing palliative care in neonatal nursing. This article reports the first phase of this research: to develop and administer an instrument to measure the attitudes of neonatal nurses to palliative care. METHODS The instrument developed for this research (the Neonatal Palliative Care Attitude Scale) underwent face and content validity testing with an expert panel and was pilot tested to establish temporal stability. It was then administered to a population sample of 1285 neonatal nurses in Australian NICUs, with a response rate of 50% (N 645). Exploratory factor-analysis techniques were conducted to identify scales and subscales of the instrument. RESULTS Data-reduction techniques using principal components analysis were used. Using the criteria of eigenvalues being 1, the items in the Neonatal Palliative Care Attitude Scale extracted 6 factors, which accounted for 48.1% of the variance among the items. By further examining the questions within each factor and the Cronbach’s of items loading on each factor, factors were accepted or rejected. This resulted in acceptance of 3 factors indicating the barriers to and facilitators of palliative care practice. The constructs represented by these factors indicated barriers to and facilitators of palliative care practice relating to (1) the organization in which the nurse practices, (2) the available resources to support a palliative model of care, and (3) the technological imperatives and parental demands. CONCLUSIONS The subscales identified by this analysis identified items that measured both barriers to and facilitators of palliative care practice in neonatal nursing. While establishing preliminary reliability of the instrument by using exploratory factor-analysis techniques, further testing of this instrument with different samples of neonatal nurses is necessary using a confirmatory factor-analysis approach.

Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

The importance of use and end-of-life phases to the life cycle greenhouse gas (GHG) emissions of concrete : a review

Global climate change is one of the most significant environmental impacts at the moment. One central issue for the building and construction industry to address global climate change is the development of credible carbon labelling schemes for building materials. Various carbon labelling schemes have been developed for concrete due to its high contribution to global greenhouse gas (GHG) emissions. However, as most carbon labelling schemes adopt cradle-to-gate as system boundary, the credibility of the eco-label information may not be satisfactory because recent studies show that the use and end-of-life phases can have a significant impact on the life cycle GHG emissions of concrete in terms of carbonation, maintenance and rehabilitation, other indirect emissions, and recycling activities. A comprehensive review on the life cycle assessment of concrete is presented to holistically examine the importance of use and end-of-life phases to the life cycle GHG quantification of concrete. The recent published ISO 14067: Carbon footprint of products – requirements and guidelines for quantification and communication also mandates the use of cradle-to-grave to provide publicly available eco-label information when the use and end-of-life phases of concrete can be appropriately simulated. With the support of Building Information Modelling (BIM) and other simulation technologies, the contribution of use and end-of-life phases to the life cycle GHG emissions of concrete should not be overlooked in future studies.