End-of-life care in the critical care setting : nurses' practices and factors affecting these practices

Background: Critical care units are designed and resourced to save lives, yet the provision of end-of-life care is a significant component of nursing work in these settings. Limited research has investigated the actual practices of critical care nurses in the provision of end-of-life care, or the factors influencing these practices. To improve the care that patients at the end of life and their families receive, and to support nurses in the provision of this care, further research is needed. The purpose of this study was to identify critical care nurses' end-of-life care practices, the factors influencing the provision of end-of-life care and the factors associated with specific end-of-life care practices. Methods: A three-phase exploratory sequential mixed-methods design was utilised. Phase one used a qualitative approach involving interviews with a convenience sample of five intensive care nurses to identify their end-of-life care experiences and practices. In phase two, an online survey instrument was developed, based on a review of the literature and the findings of phase one. The survey instrument was reviewed by six content experts and pilot tested with a convenience sample of 28 critical care nurses (response rate 45%) enrolled in a postgraduate critical care nursing subject. The refined survey instrument was used in phase three of this study to conduct a national survey of critical care nurses. Descriptive analyses, exploratory factor analysis and univariate general linear modelling was undertaken on completed survey responses from 392 critical care nurses (response rate 25%). Results: Six end-of-life care practice areas were identified in this study: information sharing, environmental modification, emotional support, patient and family-centred decision making, symptom management and spiritual support. The items most frequently identified as always undertaken by critical care nurses in the provision of end-of-life care were from the information sharing and environmental modification practice areas. Items least frequently identified as always undertaken included items from the emotional support practice area. Eight factors influencing the provision of end-of-life care were identified: palliative values, patient and family preferences, knowledge, preparedness, organisational culture, resources, care planning, and emotional support for nurses. Strong agreement was noted with items reflecting values consistent with a palliative approach and inclusion of patient and family preferences. Variation was noted in agreement for items regarding opportunities for knowledge acquisition in the workplace and formal education, yet most respondents agreed that they felt adequately prepared. A context of nurse-led practice was identified, with variation in access to resources noted. Collegial support networks were identified as a source of emotional support for critical care nurses. Critical care nurses reporting values consistent with a palliative approach and/or those who scored higher on support for patient and family preferences were more likely to be engaged in end-of-life care practice areas identified in this study. Nurses who reported higher levels of preparedness and access to opportunities for knowledge acquisition were more likely to report engaging in interpersonal practices that supported patient and family centred decision making and emotional support of patients and their families. A negative relationship was identified between the explanatory variables of emotional support for nurses and death anxiety, and the patient and family centred decision making practice area. Contextual factors had a limited influence as explanatory variables of specific end-of-life care practice areas. Gender was identified as a significant explanatory variable in the emotional and spiritual support practice areas, with male gender associated with lower summated scores on these practice scales. Conclusions: Critical care nurses engage in practices to share control with and support inclusion of families experiencing death and dying. The most frequently identified end-of-life care practices were those that are easily implemented, practical strategies aimed at supporting the patient at the end of life and the patient's family. These practices arguably require less emotional engagement by the nurse. Critical care nurses' responses reflected values consistent with a palliative approach and a strong commitment to the inclusion of families in end-of-life care, and these factors were associated with engagement in all end-of-life care practice areas. Perceived preparedness or confidence with the provision of end-of-life care was associated with engagement in interpersonal caring practices. Critical care nurses autonomously engage in the provision of end-of-life care within the constraints of an environment designed for curative care and rely on their colleagues for emotional support. Critical care nurses must be adequately prepared and supported to provide comprehensive care in all areas of end-of-life care practice. The findings of this study raise important implications, and informed recommendations for practice, education and further research.

Hospitalisation of Indigenous children in the Northern Territory for lower respiratory illness in the first year of life

Objective To describe the epidemiology of acute lower respiratory infection (ALRI) and bronchiectasis in Northern Territory Indigenous infants hospitalised in the first year of life. Design A historical cohort study constructed from the NT Hospital Discharge Dataset and the NT Imm(u)nisation Register. Participants and setting All NT resident Indigenous infants, born 1 January 1999 to 31 December 2004, admitted to NT public hospitals and followed up to 12 months of age. Main outcome measures Incidence of ALRI and bronchiectasis (ICD-10-AM codes) and radiologically confirmed pneumonia (World Health Organization protocol). Results Data on 9295 infants, 8498 child-years of observation and 15 948 hospitalised episodes of care were analysed. ALRI incidence was 426.7 episodes per 1000 child-years (95% Cl, 416.2-437.2). Incidence rates were two times higher (relative risk, 2.12; 95% Cl, 1.98-2.27) for infants in Central Australia compared with those in the Top End. The median age at first admission for an ALRI was 4.6 months (interquartile range, 2.6-7.3). Bronchiolitis accounted for most of the disease burden, with a rate of 227 per 1000 child-years. The incidence of first diagnosis of bronchiectasis was 1.18 per 1000 child-years (95% Cl, 0.60-2.16). One or more key comorbidities were present in 1445 of the 3227 (44.8%) episodes of care for ALRI. Conclusions Rates of ALRI and bronchiectasis in NT Indigenous infants are excessive, with early onset, frequent repeat episodes, and a high prevalence of comorbidities. These high rates of disease demand urgent attention.

SRL 172 (killed Mycobacterium vaccae) in addition to standard chemotherapy improves quality of life without affecting survival, in patients with advanced non-small-cell lung cancer : phase III results

Background: This open-label, randomised phase III study was designed to further investigate the clinical activity and safety of SRL172 (killed Mycobacterium vaccae suspension) with chemotherapy in the treatment of non-small-cell lung cancer (NSCLC). Patients and methods: Patients were randomised to receive platinum-based chemotherapy, consisting of up to six cycles of MVP (mitomycin, vinblastine and cisplatin or carboplatin) with (210 patients) or without (209 patients) monthly SRL172. Results: There was no statistical difference between the two groups in overall survival (primary efficacy end point) over the course of the study (median overall survival of 223 days versus 225 days; P = 0.65). However, a higher proportion of patients were alive at the end of the 15-week treatment phase in the chemotherapy plus SRL172 group (90%), than in the chemotherapy alone group (83%) (P = 0.061). At the end of the treatment phase, the response rate was 37% in the combined group and 33% in the chemotherapy alone group. Patients in the chemotherapy alone group had greater deterioration in their Global Health Status score (-14.3) than patients in the chemotherapy plus SRL172 group (-6.6) (P = 0.02). Conclusion: In this non-placebo controlled trial, SRL172 when added to standard cancer chemotherapy significantly improved patient quality of life without affecting overall survival times. © 2004 European Society for Medical Oncology.

Child eating behaviour outcomes of an early feeding intervention to reduce risk indicators for child obesity : the NOURISH RCT

Objective Describe parent-reported child eating behaviour and maternal parenting impact outcomes of an infant feeding intervention to reduce child obesity risk. Design and Methods An assessor masked Randomised Controlled Trial (RCT) with concealed allocation of individual mother-infant dyads. The NOURISH RCT enrolled 698 first-time mothers (mean age 30.1 years, SD=5.3) with healthy term infants (51% female) aged 4.3 months (SD=1.0) at baseline. Outcomes were assessed six months post-intervention when the children were 2-years old. Mothers reported on child eating behaviours using the Child Eating Behaviour Questionnaire (CEBQ), food preferences and dietary intake using a 24-hour telephone recall. Parenting was assessed using five scales validated for use in Australia. Results Intervention effects were evident on the CEBQ overall (MANOVA P=.002) and 4/8 subscales: child satiety responsiveness (P=.03), fussiness (P=.01), emotional overeating (P<.01), and food responsiveness (P=.06). Intervention children ‘liked’ more fruits (P<.01) and fewer non-core foods and beverages (Ps=.06, .03). The intervention mothers reported greater ‘autonomy encouragement’ (P=.002) Conclusions Anticipatory guidance on protective feeding practices appears to have modest positive impacts on child eating behaviours that are postulated to reduce future obesity risk.

An exploratory study of grief and health-related quality of life for caregivers of people with dementia

The aim of this qualitative study was to explore key positive and negative factors that impact on grief resolution and health outcomes of caregivers who were caring, or had cared, for a family member with dementia who had died. The study was a scoping study and involved face-to-face interviews with these family caregivers (N ¼ 13). Results indicated a complex interaction of issues (many unique to dementia caregiving) which in different combinations acted as protective or risk factors for caregiver outcomes. Interaction of individual characteristics, role appraisal, value of intrinsic and extrinsic resources, and experiences with health professionals during the caregiving period and around the death of their relative were shown to have the most influence on caregiver outcomes. Psychological resilience and satisfaction with caregiving were protective against negative outcomes while unresolved grief was a risk factor. These findings highlight the potential benefits of multicomponent, holistic dementia caregiver interventions.

Nicklinson v Ministry of Justice [2012] 304 (QB) : further UK developments regarding a person's right to choose when and how to die : assisted termination of life

UK High Court decision - application for declarations legitimising third party assistance in voluntary termination of life - facts - moral, social and ethical issues - analysis.

Quality of life of women with lower limb swelling or lymphedema 3-5 years following endometrial cancer

Objective To quantitatively assess and compare the quality of life (QoL) of women with a self-reported diagnosis of lower limb lymphedema (LLL), to women with lower limb swelling (LLS), and to women without LLL or LLS following treatment for endometrial cancer. Methods 1399 participants in the Australian National Endometrial Cancer Study were sent a follow-up questionnaire 3–5 years after diagnosis. Women were asked if they had experienced swelling in the lower limbs and, if so, whether they had received a diagnosis of lymphedema by a health professional. The 639 women who responded were categorised as: Women with LLL (n = 68), women with LLS (n = 177) and women without LLL or LLS (n = 394). Multivariable-adjusted generalized linear models were used to compare women’s physical and mental QoL by LLL status. Results On average, women were 65 years of age and 4 years after diagnosis. Women with LLL had clinically lower physical QoL (M= 41.8, SE= 1.4) than women without LLL or LLS (M= 45.1, SE= 0.8, p = .07), however, their mental QoL was within the normative range (M= 49.6; SE= 1.1 p = 1.0). Women with LLS had significantly lower physical (M= 41.0, SE= 1.0, p = .003) and mental QoL (M= 46.8; SE= 0.8, p < .0001) than women without LLL or LLS (Mental QoL: M= 50.6, SE= 0.8). Conclusion Although LLL was associated with reductions in physical QoL, LLS was related to reductions in both physical and mental QoL 3-5 years after cancer treatment. Early referral to evidence-based lymphedema programs may prevent long-term impairments to women’s QoL.

Climate change and children’s health : a call for research on what works to protect children

Climate change is affecting and will increasingly influence human health and wellbeing. Children are particularly vulnerable to the impact of climate change. An extensive literature review regarding the impact of climate change on children’s health was conducted in April 2012 by searching electronic databases PubMed, Scopus, ProQuest, ScienceDirect, and Web of Science, as well as relevant websites, such as IPCC and WHO. Climate change affects children’s health through increased air pollution, more weather-related disasters, more frequent and intense heat waves, decreased water quality and quantity, food shortage and greater exposure to toxicants. As a result, children experience greater risk of mental disorders, malnutrition, infectious diseases, allergic diseases and respiratory diseases. Mitigation measures like reducing carbon pollution emissions, and adaptation measures such as early warning systems and post-disaster counseling are strongly needed. Future health research directions should focus on: (1) identifying whether climate change impacts on children will be modified by gender, age and socioeconomic status; (2) refining outcome measures of children’s vulnerability to climate change; (3) projecting children’s disease burden under climate change scenarios; (4) exploring children’s disease burden related to climate change in low-income countries, and ; (5) identifying the most cost-effective mitigation and adaptation actions from a children’s health perspective.

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.

Key facilitators and barriers to quality of life in residential aged care : the role of design

Australia is undergoing a critical demographic transition: the population is ageing. By 2050, one in four Australians will be older than 65 years and by 2031, the number of older Australians requiring residential aged care will increase 63%, to 1.4 million (ABS, 2005). In anticipation of this global demographic transition, the World Health Organisation has advocated ‘active ageing’, identifying health, participation and security as the three key factors that enhance quality of life for people as they age (WHO, 2002). While there is considerable discussion and acceptance of active ageing principles, little is known about the experience of ‘active ageing’ for older Australians who live in Residential Aged Care Facilities (RACF). This research addresses this knowledge gap by exploring the key facilitators and barriers to quality of life and active ageing in aged care from the perspective of aged care residents (n=12). To do this, the project documented the initial expectations and daily life experience of new residents living in a RACF over a one-year period. Combined with in-depth interviews and surveys, the project utilised Photovoice methodology - where participants used photography to record their lived experiences. The initial findings suggest satisfaction with living in aged care centers around five key themes; resident’s mental attitude to living in aged care, forming positive peer and staff relationships, self-determination and maintaining independence, opportunities to participate in interesting activities, and living in a safe and comfortable physical environment. This paper reports on the last of these five key themes, focusing on the role of design in facilitating quality of life, specifically: “living within these walls” – safety, comfort and the physical environment.

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.

Potentiation of the early visual response to learned danger signals in adults and adolescents

The reinforcing effects of aversive outcomes on avoidance behaviour are well established. However, their influence on perceptual processes is less well explored, especially during the transition from adolescence to adulthood. Using electroencephalography, we examined whether learning to actively or passively avoid harm can modulate early visual responses in adolescents and adults. The task included two avoidance conditions, active and passive, where two different warning stimuli predicted the imminent, but avoidable, presentation of an aversive tone. To avoid the aversive outcome, participants had to learn to emit an action (active avoidance) for one of the warning stimuli and omit an action for the other (passive avoidance). Both adults and adolescents performed the task with a high degree of accuracy. For both adolescents and adults, increased N170 event-related potential amplitudes were found for both the active and the passive warning stimuli compared with control conditions. Moreover, the potentiation of the N170 to the warning stimuli was stable and long lasting. Developmental differences were also observed; adolescents showed greater potentiation of the N170 component to danger signals. These findings demonstrate, for the first time, that learned danger signals in an instrumental avoidance task can influence early visual sensory processes in both adults and adolescents.

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.

Health Information Exchange in the wake of ‘big data’ paradigm – the theme is from ‘quality of information to quality of life’

Health Information Exchange (HIE) is an interesting phenomenon. It is a patient centric health and/or medical information management scenario enhanced by integration of Information and Communication Technologies (ICT). While health information systems are repositioning complex system directives, in the wake of the ‘big data’ paradigm, extracting quality information is challenging. It is anticipated that in this talk, ICT enabled healthcare scenarios with big data analytics will be shared. In addition, research and development regarding big data analytics, such as current trends of using these technologies for health care services and critical research challenges when extracting quality of information to improve quality of life will be discussed.

Can counseling add value to an exercise intervention for improving quality of life in breast cancer survivors? A feasibility study

Background: Improved survivorship has led to increased recognition of the need to manage the side effects of cancer and its treatment. Exercise and psychological interventions benefit survivors; however, it is unknown if additional benefits can be gained by combining these two modalities. Objective: Our purpose was to examine the feasibility of delivering an exercise and counseling intervention to 43 breast cancer survivors, to determine if counseling can add value to an exercise intervention for improving quality of life (QOL) in terms of physical and psychological function. Methods: We compared exercise only (Ex), counseling only (C), exercise and counseling (ExC), and usual care (UsC) over an 8 week intervention. Results: In all, 93% of participants completed the interventions, with no adverse effects documented. There were significant improvements in VO2max as well as upper body and lower body strength in the ExC and Ex groups compared to the C and UsC groups (P < .05). Significant improvements on the Beck Depression Inventory were observed in the ExC and Ex groups, compared with UsC (P < .04), with significant reduction in fatigue for the ExC group, compared with UsC, and no significant differences in QOL change between groups, although the ExC group had significant clinical improvement. Limitations: Limitations included small subject number and study of only breast cancer survivors. Conclusions: These preliminary results suggest that a combined exercise and psychological counseling program is both feasible and acceptable for breast cancer survivors and may improve QOL more than would a single-entity intervention.