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Background: New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. Objective: To identify research priorities regarding the implementation and delivery of AD in New Zealand. Methods: Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. Results: One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the 'effectiveness of safeguards in the Act to protect people'; the lowest rated topic was research into the 'experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided'. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for 'structurally disadvantaged' groups; and ensuring the well-being of patients, families/whānau, providers and non-providers. Conclusions: Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice. [ABSTRACT FROM AUTHOR]

Background: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. Objectives: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. Methods: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Results: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. Conclusions: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas. [ABSTRACT FROM AUTHOR]

Background: While many Aotearoa/New Zealanders are receiving excellent palliative care the Pacific populations have limited access to available hospice and palliative care services. Little research has been conducted to identify barriers unique to Pacific populations accessing these services. The purpose of this study was to explore key stakeholders' perspectives on the determinants of low access among Pacific populations to these services. Methods: Forty-five semi-structured interviews were conducted face-to-face with hospice patients and their families, hospice/health providers and key informants from the Auckland and Wellington region of Aotearoa/New Zealand. The interviews were recorded and transcribed verbatim and a thematic analysis was carried out by identifying, coding and categorising patterns in the data. Identified themes were then discussed further to determine the relevance of the data grouped by theme. Results: Five interrelated themes affecting access emerged: perception of hospice (often negative) through lack of accurate information, but changing; families' role to look after their own and sick elderly; hospice experiences; continuity of care in the community and the need for information and communication. Conclusion: Hospice and associated palliative care services are under-utilised and commonly misunderstood among Pacific populations in Aotearoa/New Zealand. There is active support following appropriate information received, hence the need for community education and culturally appropriate hospice and palliative services. Inadequate inter-professional communication contributes to polypharmacy and inefficiency in continuity of care across all levels. The Pacific individual is one component of a collective that is critical in major decisions in end-of-life and life changing situations. The findings may guide policies and further research to improve Hospice and Palliative services in Aotearoa/New Zealand. [ABSTRACT FROM AUTHOR]

Background: Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Māori. Methods: Data on end of life preferences were gathered from 147 Māori (aged >80 years) and 291 non- Māori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Māori specific subsections was used. Results: The top priority for both Māori and non-Māori participants at end of life was 'not being a burden to my family'. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Māori participants wanted spiritual practices at end of life than male Māori participants. More male non-Māori participants wanted to be resuscitated than female non- Māori participants. Conclusions: That a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants' top concern - namely not being a burden - has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated. [ABSTRACT FROM AUTHOR]

Background: Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. Methods: This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient's general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). Results: The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. Conclusions: The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013. [ABSTRACT FROM AUTHOR]

Background: In most developed countries, Health Care Assistants comprise a significant, and growing, proportion of the residential aged care workforce. Despite the fact that they provide the majority of direct care for residents, little is known about a key care aspect of their work, namely their experience of caring for dying residents. Methods: Twenty-six Health Care Assistants working in aged residential care facilities in Auckland, New Zealand participated in six focus group discussions. Focus groups were designed to explore the experiences of Health Care Assistants caring for imminently dying residents in aged care facilities and to identify barriers and facilitators to their work in this area. The focus groups were digitally recorded, transcribed verbatim and analysed using a general inductive approach. Results: Participants confirmed that Health Care Assistants provide the majority of hands on care to dying residents and believed they had a valuable role to play at this time due to their unique 'familial' relationship with residents and families. However, it was apparent that a number of barriers existed to them maximising their contribution to supporting dying residents, most notably the lack of value placed on their knowledge and experience by other members of the multidisciplinary team. Whilst a need for additional palliative and end of life care education was identified, a preference was identified for hands on education delivered by peers, rather than the didactic education they currently receive. Conclusion: Given ageing populations internationally coupled with a constrained health budget, the role of Health Care Assistants in most developed countries is likely to become even more significant in the short to medium term. This study makes a unique contribution to the international literature by identifying the barriers to caring for dying residents experienced by this valuable sector of the aged care workforce. These data have the potential to inform new, innovative, interventions to address the urgent need identified to improve palliative and end of life care management in aged care internationally. [ABSTRACT FROM AUTHOR]

Background: The number of people dying in advanced old age is increasing rapidly and building the evidence base regarding end - of - life care for older people has been identified as an international policy priority. The unique opportunity to link longitudinal studies of ageing with studies exploring the end of life circumstances of older people remains under-exploited internationally. Very little is known about the specific circumstances, cultural needs and care preferences of indigenous older people, including Māori, at end - of - life and the needs of their whānau/ extended family carers. Methods: We will use rigorous qualitative methods to conduct post-bereavement interviews with bereaved whānau and family of 50-60 people who died >80 years; approximately half of participants will be Maori. The older decedents were participants in the first longitudinal study of older people involving a specific indigenous cohort internationally: Te Puāwaitanga O Ngā Tapuwae Kia Ora Tonu, Life and Living in Advanced Age: a Cohort Study in New Zealand (LiLACS NZ). Prior to death, they completed a questionnaire regarding their end-of-life preferences and nominated a family or whānau member to participate in this separate study exploring end-of-life circumstances of those in advanced age. Discussion: Recommendations to improve care will be formulated in collaboration with participants and their local hapū (sub-tribe). Ultimately this study has the potential to inform better outcomes for the growing numbers of people dying in advanced old age both in New Zealand and internationally, as well as their whānau and family caregivers. It also highlights the ability to generate an in-depth understanding of end-of-life circumstances by appending studies of palliative and end-of-life care onto existing longitudinal studies. [ABSTRACT FROM AUTHOR]

Background: Most people prefer to receive end-of-life care in familiar surroundings rather than in hospital. This study examines variation in place of death for people dying from Parkinson's disease (PD) across 11 European and non-European countries. Methods: Using death certificate data of 2008 for Belgium, France, Italy, Hungary, Czech Republic, New Zealand, USA, Canada, Mexico, South Korea and Spain for all deaths with PD as an underlying cause (ICD-10 code: G20) cross-national differences in place of death were examined. Associations between place of death and patient socio-demographic and regional characteristics were evaluated using multivariable binary logistic regression analyses. Results: The proportion of deaths in hospital ranged from 17% in the USA to 75% in South Korea. Hospital was the most prevalent place of death in France (40%), Hungary (60%) and South Korea; nursing home in New Zealand (71%), Belgium (52%), USA (50%), Canada (48%) and Czech Republic (44%); home in Mexico (73%), Italy (51%) and Spain (46%). The chances of dying in hospital were consistently higher for men (Belgium, France, Italy, USA, Canada), those younger than 80 years (Belgium, France, Italy, USA, Mexico), and those living in areas with a higher provision of hospital beds (Italy, USA). Conclusions: In several countries a substantial proportion of deaths from PD occurs in hospitals, although this may not be the most optimal place of terminal care and death. The wide variation between countries in the proportion of deaths from PD occurring in hospital indicates a potential for many countries to reduce these proportions. [ABSTRACT FROM AUTHOR]

Background Corticosteroids are commonly prescribed in palliative care for alleviation of both specific and non-specific symptoms, but relatively little is known of the perspectives of clinicians and what influences their prescribing in this context. The aim of this study was to explore the experiences and perspectives of those involved in the prescribing of corticosteroids in palliative care. Methods Semi-structured interviews were undertaken with 12 medical practitioners and six senior nurses from a sample of six New Zealand hospices to identify their experiences and attitudes regarding the prescribing of corticosteroids. A general inductive approach was used to thematically analyse data. Results Five broad themes were identified: the role of corticosteroids in palliative care; indications for corticosteroids; influences on prescribing; use of guidelines; and perceptions of previous study data on prescribing patterns for their hospice. Interviewees regarded these agents as having an important place in in palliative care but expressed a degree of uncertainty about certain aspects of their use. They were concerned about issues such as prescribing for nonspecific indications, methods of stopping, and lack of monitoring and reviewing. Guidelines were used routinely by only one of the sample hospices. Corticosteroids tended to be prescribed experientially or by habit, rather than based on evidence-based guidelines. Conclusions This study has highlighted differences in the understanding of the place of corticosteroids in palliative care by the clinicians interviewed in this study and different practices, particularly in the treatment of non-specific symptoms and in the use of guidelines. These findings suggest a need for further research and discussion about the role of corticosteroids in palliative care and the development of evidence-based guidelines to assist prescribers. [ABSTRACT FROM AUTHOR]

Background Corticosteroids are a potent group of medicines, with many adverse effects, that are widely prescribed in palliative care for both specific and non-specific indications. The aim of this study was to document current patterns of corticosteroid prescribing in New Zealand palliative care settings and to reflect on whether they were in line with international experience. Methods A retrospective review of inpatient use of corticosteroids was undertaken in a sample of six New Zealand hospices. Data were collected on numbers of patients prescribed corticosteroids, indications for use, choice of agent, doses and dosage changes, duration of course, incidence of adverse effects, method of stopping, use of guidelines, and processes for monitoring and review. Results The case notes of 1179 inpatients were reviewed and 768 patients (65.1%) had received at least one course of corticosteroids. There was a marked consistency in the proportion of patients prescribed corticosteroids among the sample hospices (61-69%). Detailed information was recorded for a sample of 260 patients. Corticosteroids were prescribed most commonly for non-specific reasons (40.4% of prescribing events), followed by neurological (25.3%) and soft tissue infiltration symptoms (14.4%). The agent of choice was dexamethasone with a dose range of 1 mg to 40 mg and a median dose of 8 mg. The median course duration for all corticosteroid prescribing events was 29 days. Abrupt stopping occurred in 72 (23.2%) cases, of these 35 (49%) had been on a course of corticosteroids for more than three weeks. Guidelines were only available in one hospice. Monitoring and review was documented in 135 (52%) of cases, and adverse effects were recorded in 82 (32%); these are likely to be underestimates due to a high level of non-recording. Conclusions This New Zealand study showed that corticosteroids are widely prescribed in palliative care, most commonly for non-specific indications. These findings are consistent with the international literature in this area and this large, multi-site study adds weight to the findings and the need for ongoing discussion about the place of these drugs in palliative care. [ABSTRACT FROM AUTHOR]

Background: Improving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management. Methods: A prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded. Results: Ninety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients' average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan. Conclusion: One fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support 'generalist' palliative care providers in initiating, and appropriately recording, such discussions. [ABSTRACT FROM AUTHOR]

Background: ACP involving a facilitated conversation with a health or care professional is more effective than document completion alone. In policy, there is an expectation that health and care professionals will provide ACP support, commonly within their existing roles. However, the potential contributions of different professionals are outlined only broadly in policy and guidance. Research on opportunities and barriers for involving different professionals in providing ACP support, and feasible models for doing so, is currently lacking. Methods: We identified twelve healthcare organizations aiming to offer system-wide ACP support in the United States, Canada, Australia and New Zealand. In each, we conducted an average 13 in-depth interviews with senior managers, ACP leads, dedicated ACP facilitators, physicians, nurses, social workers and other clinical and non-clinical staff. Interviews were analyzed thematically using NVivo software. Results: Organizations emphasized leadership for ACP support, including strategic support from senior managers and intensive day-to-day support from ACP leads, to support staff to deliver ACP support within their existing roles. Over-reliance on dedicated facilitators was not considered sustainable or scalable. We found many professionals, from all backgrounds, providing ACP support. However, there remained barriers, particularly for facilitating ACP conversations. A significant barrier for all professionals was lack of time. Physicians sometimes had poor communication skills, misunderstood medico-legal aspects and tended to have conversations of limited scope late in the disease trajectory. However, they could also have concerns about the appropriateness of ACP conversations conducted by others. Social workers had good facilitation skills and understood legal aspects but needed more clinical support than nurses. While ACP support provided alongside and as part of other care was common, ACP conversations in this context could easily get squeezed out or become fragmented. Referrals to other professionals could be insecure. Team-based models involving a physician and a nurse or social worker were considered cost-effective and supportive of good quality care but could require some additional resource. Conclusions: Effective staffing of ACP support is likely to require intensive local leadership, attention to physician concerns while avoiding an entirely physician-led approach, some additional resource and team-based frameworks, including in evolving models of care for chronic illness and end of life. [ABSTRACT FROM AUTHOR]