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Background: Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. Methods: We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents' wishes. Results: Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). Conclusion(s): To better provide care in accordance with a person's wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents' preferences. [ABSTRACT FROM AUTHOR]

Background: The current study aimed to further our understanding of second opinions among medical oncology patients by examining the proportion of patients who sought a second opinion about their cancer treatment, and why. Methods: The study was conducted between 2013 and 2015 in three medical oncology clinics located in public hospitals in Australia: in metropolitan New South Wales, metropolitan Queensland, and in Tasmania. Those patients who provide written informed consent were asked to complete a brief paper and pencil survey in the clinic containing questions on sociodemographic, disease and treatment characteristics. Approximately 1 month later, participants were mailed a second paper and pencil survey which contained questions about whether they had sought a second opinion and their motivation for doing so. Non-responders were followed up by letter at 3 and 6 weeks. Results: Of 823 patients screened for eligibility, 698 eligible patients, 612 provided consent. Of those who consented, 355 completed both the initial survey and the second survey and were included in the analyses. Of the 57 patients who sought a second opinion, the most frequent reasons given for doing so were the need for reassurance (49.1%) and the need to consider the range of treatment options (41.8%). Of the 297 (83.6%) participants who did not seek a second opinion, the main reason was confidence in the first doctor (88.7%). Only 3.1% patients did not know that they could ask for a second opinion. Occasionally the doctor will initiate the referral for a second opinion. Conclusions: Our study suggests that a minority of cancer patients seek a second opinion at some phase during their care. Most did so for reassurance or to ensure that they had covered all of the treatment options and not because of discomfort or distrust of their treating doctor. Few patients reported a lack of awareness of second opinions. This suggests that second opinions form part of a patient-centred approach to information provision about care options. Whether the second opinion improves the quality of care or indeed outcomes has been difficult to demonstrate. [ABSTRACT FROM AUTHOR]

Background: Law purports to regulate end-of-life care but its role in decision-making by doctors is not clear. This paper, which is part of a three-year study into the role of law in medical practice at the end of life, investigates whether law affects doctors' decision-making. In particular, it considers whether the fact that the law differs across Australia's three largest states - New South Wales (NSW), Victoria and Queensland - leads to doctors making different decisions about withholding and withdrawing life-sustaining treatment from adults who lack capacity. Methods: A cross-sectional postal survey of the seven specialties most likely to be involved in end-of-life care in the acute setting was conducted between 18 July 2012 and 31 January 2013. The sample comprised all medical specialists in emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine on the AMPCo Direct database in those three Australian states. The survey measured medical specialists' level of legal compliance, and reasons for their decisions, concerning the withholding or withdrawal of lifesustaining treatment. Multivariable logistic regression was used to examine predictors of legal compliance. Linear regression was used to examine associations between the decision about life-sustaining treatment and the relevance of factors involved in making these decisions, as well as state differences in these associations. Results: Response rate was 32% (867/2702). A majority of respondents in each state said that they would provide treatment in a hypothetical scenario, despite an advance directive refusing it: 72% in NSW and Queensland; 63% in Victoria. After applying differences in state law, 72% of Queensland doctors answered in accordance with local law, compared with 37% in Victoria and 28% in NSW (p < 0.001). Doctors reported broadly the same decision-making approach despite differences in local law. Conclusions: Law appears to play a limited role in medical decision-making at the end of life with doctors prioritising patient-related clinical and ethical considerations. Different legal frameworks in the three states examined did not lead to different decisions about providing treatment. More education is needed about law and its role in this area, particularly where law is inconsistent with traditional practice. [ABSTRACT FROM AUTHOR]

Background: Advance Care Planning (ACP) by Registered Nurses (RNs) has been emerging. However, there is limited understanding about what RNs experience as they incorporate ACP into their practice. This study aimed to elicit the experiences of ACP RNs with the implementation of a normalised ACP (NACP) service in hospital and community care settings. Methods: A qualitative descriptive study invited four ACP RNs who delivered a nurse-led NACP for a 6 months duration at two hospital and two community health care settings in New South Wales (NSW), Australia. The experiences of the ACP RNs were captured through a semi-structured interview and weekly debriefing meetings. The interview recordings were transcribed verbatim and the minutes of weekly debriefing meetings were utilized. Data were analysed by two independent researchers using thematic analysis with the Normalisation Process Theory (NPT) as a methodological framework. Findings: The ACP RNs were females with a mean age of 43 years old. Their nursing experiences ranged 2 to 25 years but they had minimal experiences with ACP and had not attended any education about ACP previously. The following four themes were identified in the experiences of the ACP RNs; 1) Embracing NACP service; 2) Enablers and barriers related to patients and health professionals; 3) Enablers and barriers related to ACP RNs; and 4) What it means to be an ACP RN. Conclusion: The introduction of a NACP service into existing clinical systems is complex. The study demonstrated the capacity of RNs to engage in ACP processes, and their willingness to deliver an NACP service with a raft of locally specific enablers and barriers. Trial registration: The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246). The URL of the trial registry record [ABSTRACT FROM AUTHOR]

Background Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group. Methods Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis. Results Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources. Conclusion Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations. [ABSTRACT FROM AUTHOR]

Background: Providing quality palliative care in residential aged care facilities (RACFs) (aged care homes) is a high priority for ageing populations worldwide. Older people admitted to these facilities have palliative care needs. Nursing assistants (however termed) are the least qualified staff and provide most of the direct care. They have an important role at the frontline of care spending more time with residents than any other care provider but have been found to lack the necessary knowledge and skills to provide palliative care. The level of competence of this workforce to provide palliative care requires evaluation using a valid and reliable instrument designed for nursing assistants' level of education and the responsibilities and practices of their role., Method: The overall study purpose was to develop and test an instrument capable of evaluating the knowledge, skills and attitudes of nursing assistants within a palliative approach in RACFs. Development consisted of a four-phase mixed-methods sequential design. In this paper, the results and key findings following psychometric testing of the instrument in Phase 4 is reported using data collected from a random sample of 17 RACFs and 348 nursing assistants in the Greater Sydney region. Study hypotheses were tested to confirm discriminative validity and establish the utility of the instrument in both research and training assessment., Results: Individual item properties were analysed for difficulty, discrimination and item-total correlations. Discriminative and structural validity, and internal consistency and test-retest reliability were demonstrated. Three separate questionnaires comprising 40 items were finalised: The Palliative Approach for Nursing Assistants (PANA)&#95;Knowledge Questionnaire (17 items), the PANA&#95;Skills Questionnaire (13 items) and the PANA&#95;Attitudes Questionnaire (10 items)., Conclusions: This study provides preliminary evidence for the validity and reliability of three new questionnaires that demonstrate sensitivity for nursing assistants' level of education and required knowledge, skills and attitudes for providing a palliative approach. Implications for practice include the development of palliative care competencies through structured education and training across this workforce, and ongoing professional development opportunities for nursing assistants, especially for those with the longest tenure.