Towards better end-of-life care : a major opportunity for nurses to contribute to the debate

Integrated care pathways are documents which outline the essential steps of multidisciplinary care in addressing a specific clinical problem (Rotter et al., 2010). They can be used to introduce clinical guidelines and systematic audits of clinical practice, and to ensure that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. The Liverpool Care Pathway (LCP) is an example of an integrated care pathway, designed in the 1990s to guide care for people who are in their last days of life (Ellershaw et al., 1997, Ellershaw and Ward, 2003)...

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.

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.

Cutting the Gordian knot of futility : a case for law reform on unilateral withholding and withdrawal of potentially life-sustaining treatment

In this paper, we propose law reform with respect to the unilateral withholding or withdrawal of potentially life-sustaining treatment in Australia and New Zealand. That is, where a doctor withholds or withdraws potentially life-sustaining treatment without consent from a patient or a patient’s substitute decision-maker (where the patient lacks capacity), or authorisation from a court or tribunal, or by operation of a statute or justifiable government or institutional policy. Our proposal is grounded in the core values that do (or should) underpin a regulatory framework on an issue such as this; these values are drawn from existing commitments made by Australia and New Zealand through legislation, the common law, and conventions and treaties. It is also grounded in a critical review of the law on unilateral withholding and withdrawal as well as the legal context within which this issue sits in Australasia. We argue that the current law is inconsistent with the core values and develop a proposal for a legal response to this issue that more closely aligns with the core values it is supposed to serve.

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.

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.

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.

Too ill to will? deathbed wills: assessing testamentary capacity near the end of life

Assessing testamentary capacity in the terminal phase of an illness or at a person's deathbed is fraught with challenges for both doctors and lawyers. Numerous issues need to be considered when assessing capacity for a will. These issues are exacerbated when such an assessment needs to be undertaken at the bedside of a dying patient. The nature and severity of the illness, effects on cognition of the terminal illness, effects of medication, urgency, psychological and emotional factors, interactions with carers, family and lawyers, and a range of other issues confound and complicate the assessment of capacity. What is the doctor's role in properly assessing capacity in this context and how does this role intersect with the legal issues? Doctors will play an increasing role in assessing testamentary capacity in this setting. The ageing of society, more effective treatment of acute illness and, often, the prolongation of dying are only some of the factors leading to this increasing need. However, despite its importance and increasing prevalence, the literature addressing this challenging practical area is scarce and offers limited guidance. This paper examines these challenges and discusses some practical approaches.

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.

Guidelines on the management of implantable cardioverter defibrillators at the end of life

El presente artículo es un documento conjunto de la Sociedad Española de Geriatría y Gerontología, la Sociedad Española de Cuidados Paliativos y la Sección de Cardiología Geriátrica de la Sociedad Española de Cardiología. Su objetivo es paliar la laguna que existe en España en lo que respecta al manejo de los desfibriladores automáticos implantables (DAI) en las fases finales de la vida. Cada vez es más frecuente encontrarse enfermos portadores de DAI en fase terminal de una enfermedad avanzada, como insuficiencia cardíaca refractaria, enfermedades oncológicas, otras insuficiencias orgánicas o enfermedades neurodegenerativas con mal pronóstico a corto plazo. La enorme mayoría de estos pacientes tiene más de 65 años, por ello el documento se enfoca de forma particular a los ancianos que se encuentran en esta situación, aunque el proceso de toma de decisiones es similar en portadores de DAI más jóvenes que están en la fase final de su vida.

Young caregivers in the end-of-life setting: a population-based profile of an emerging group.

PURPOSE: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services. METHODS: A population-based analysis of caregivers was performed from piloted questions included in the 2001-2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence. FINDINGS: Most active care was provided by older, close family members, but large numbers of young people (ages 15-29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking "hands-on" care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief. CONCLUSION: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.