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This paper explores older people's views, experiences and sources of bereavement support following the death of a spouse, family member or other significant individual. Telephone interviews were conducted with 28 bereaved older adults recruited from the Brief Risk Identification Geriatric Health Tool trial participants in three geographically diverse District Health Boards in New Zealand. Analysis adhered to the principles of grounded theory and followed the National Centre for Social Research 'Framework' approach. Findings indicate that family and friends play a fundamental role supporting older bereaved adults, both emotionally and practically. Existing community-based organisations were identified as an important source of support following bereavement. Despite the emotional, financial and practical challenges associated with bereavement, the majority of participants questioned the role of, need for and value of formal bereavement support services. Instead, study participants cited a combination of being older and previous life experiences as factors that had enabled them to cope with these largely 'expected' events. Moreover, they demonstrated considerable resilience in managing the emotional and practical changes associated with loss and bereavement. This study poses a challenge to the argument that the growing secularisation of society has led to an increase in the use of professional bereavement services over more 'traditional' forms of support, such as family, friends and community and religious organisations. The paper highlights the value of adopting a public health-based approach as a way of optimising bereavement support via the use of existing community organisations previously known to older people. This is particularly important in those countries where the provision of bereavement support is limited due to resource constraints. [ABSTRACT FROM AUTHOR]

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide 'hands-on' care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in 'hands-on' palliative care and decision-making requires care staff to relinquish their role as 'expert provider'. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision. [ABSTRACT FROM AUTHOR]

There is much literature regarding going home to die in terminally ill cancer patients however, little is written about withdrawing treatment at home in critical care. One intensive care unit's experience in New Zealand demonstrates how this can be done safely. The preparation of families and patients must be done with great care. There are challenges to be overcome including supportive resources in the community, staffing and safety of the patient and family. It is possible to withdraw/withhold treatment in a patient's home and this is highly valued by the families. [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: People with dementia have unique palliative and end-of-life needs. However, access to quality palliative and end-of-life care for people with dementia living in nursing homes is often suboptimal. There is a recognised need for nursing home staff training in dementia-specific palliative care to equip them with knowledge and skills to deliver high quality care.Objective: The primary aim was to evaluate the effectiveness of a simulation training intervention (IMPETUS-D) aimed at nursing home staff on reducing unplanned transfers to hospital and/or deaths in hospital among residents living with dementia.Design: Cluster randomised controlled trial of nursing homes with process evaluation conducted alongside.Subjects& Setting: One thousand three hundred four people with dementia living in 24 nursing homes (12 intervention/12 control) in three Australian cities, their families and direct care staff.Methods: Randomisation was conducted at the level of the nursing home (cluster). The allocation sequence was generated by an independent statistician using a computer-generated allocation sequence. Staff from intervention nursing homes had access to the IMPETUS-D training intervention, and staff from control nursing homes had access to usual training opportunities. The predicted primary outcome measure was a 20% reduction in the proportion of people with dementia who had an unplanned transfer to hospital and/or death in hospital at 6-months follow-up in the intervention nursing homes compared to the control nursing homes.Results: At 6-months follow-up, 128 (21.1%) people with dementia from the intervention group had an unplanned transfer or death in hospital compared to 132 (19.0%) residents from the control group; odds ratio 1.14 (95% CI, 0.82-1.59). There were suboptimal levels of staff participation in the training intervention and several barriers to participation identified.Conclusion: This study of a dementia-specific palliative care staff training intervention found no difference in the proportion of residents with dementia who had an unplanned hospital transfer. Implementation of the intervention was challenging and likely did not achieve adequate staff coverage to improve staff practice or resident outcomes.Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12618002012257 . Registered 14 December 2018. [ABSTRACT FROM AUTHOR]

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource‐rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross‐sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi‐square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty‐six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision‐making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that "generalists" are willing and able to play a key role in palliative care provision needs to be further challenged. [ABSTRACT FROM AUTHOR]

Renal supportive care (RSC) is an approach integrating nephrology and palliative care to improve quality of life for people with chronic kidney disease (CKD). RSC practice varies across services; therefore, understanding clinicians' perspectives is important to the evolution and definition of RSC. Aim: To understand renal clinicians' views and experiences of RSC, palliative care and end‐of‐life care. Method: A cross‐sectional online survey was undertaken across Australia and New Zealand between February and May 2018. Participants were asked about end‐of‐life care, RSC, palliative care and an ideal model of RSC. Results: Estimated response rate 13% included 382 clinicians; doctors (32%), nurses (68%); of whom 84% access specialist palliative care and 59% RSC. A lack of agreed treatment goals (86%) and late or rushed treatment decision making (85%) was associated with challenging end‐of‐life experiences. Variable concepts of RSC were described, with RSC being considered the same as: usual care for all CKD patients (40%), conservative (30%) or palliative care (22%). The term RSC was generally distinct from (77%) and more acceptable than palliative care (80%) with preferential RSC referral for symptoms (86% vs 69%, P <.01) and complex treatment decision making (82% vs 58%, P <.01). Aspirations for RSC included improving symptoms and quality of life (89%), with an ideal model comprising: symptom management (98%), improved nephrology and community service integration (96%) and clinician education (94%). Conclusion: This study revealed challenges for renal clinicians in providing end‐of‐life care and variation of views and experiences of RSC. It represents opportunities to develop RSC aligned with clinician priorities to improve patient care. SUMMARY AT A GLANCE: A cross‐sectional online survey across Australia and New Zealand that revealed challenges for renal care providers in providing end‐of‐life care and variation of views and experiences of renal supportive care (RSC). It represents opportunities to develop RSC aligned with clinician priorities to improve patient care. [ABSTRACT FROM AUTHOR]

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross‐sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self‐complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty‐six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in‐depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end‐of‐life. [ABSTRACT FROM AUTHOR]

Background: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.Methods: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident's death.Results: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.Conclusions: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach. [ABSTRACT FROM AUTHOR]

Background: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The 'patient navigator' model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps. Aim: To explore the role family caregivers play in helping people dying in advanced old age navigate health services at the end of life. Design: Qualitative study using semi-structured interviews and analysed via thematic analysis. Setting/participants: A total of 58 interviews were conducted in New Zealand with the family caregivers of 52 deceased older relatives who had been participants in Life and Living in Advanced Age: a Cohort Study in New Zealand. Results: Fragmentation of services was the key concern, causing distress both for the older person and their family caregivers. Carers identified and engaged with appropriate services in order to facilitate care and treatment. Their involvement was not always met by healthcare professionals with respect or regard to their knowledge of the older person's needs. Conclusion: Family caregivers are trying to help their older relatives overcome the limitations of fragmented health systems at the end of life. They are doing so at times by stepping in to perform patient navigator tasks usually conceptualised as a role for statutory services to carry out. Programmes and services need to be implemented that will better support family carers who are acting as care navigators. [ABSTRACT FROM AUTHOR]

Background: There is a dearth of qualitative research on resuscitation preferences of older New Zealanders. The aim of this study was to investigate the resuscitation preferences of older New Zealanders in a retirement village or residential care setting, as well as the reasons for these preferences. Methods: This study had 37 participants from two retirement villages in Auckland, New Zealand. Participants were interviewed about a hypothetical case vignette about cardiopulmonary resuscitation, and then they completed a semi‐structured interview. Interviews were subsequently transcribed and analyzed by two independent researchers using thematic qualitative methodology. Results: The majority of the participants (n = 25, 67.6%) decided against resuscitation, 10 (27.0%) wanted resuscitation, and 2 (5.4%) were ambivalent about their resuscitation preferences. Three main themes emerged during the data analysis regarding participants’ reasons for deciding against resuscitation: (i) the wish for a natural death; (ii) advanced age; and (iii) a realistic awareness about the consequences of resuscitation. Responses related to the third these had three subthemes: (i) reduced quality of life; (ii) loss of personal integrity and sense of existence; and (iii) concern that resuscitation could result in unnecessary costs or a burden on others. Among participants who preferred resuscitation, two main themes emerged regarding their reasons for wanting resuscitation: (i) the wish to prolong a good quality of life; and (ii) unrealistic expectations of resuscitation. Conclusions: Older people in this study were able to make reasoned decisions about resuscitation based on balancing their subjective estimations of quality of life and the presumed consequences of resuscitation. It is important therefore to educate older adults about the potential outcomes of resuscitation and explore (and document) their reasoning when discussing resuscitation preferences so their wishes can be respected. [ABSTRACT FROM AUTHOR]

Background End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. Design Inductive qualitative content analysis was conducted on free-text responses to a web-based survey exploring unit-based bereavement practice distributed to nurse managers in 229 intensive care units in New Zealand and Australia. Results A total of 153 (67%) surveys were returned with 68 respondents making free-text responses. Respondents were mainly Australian ( n = 54, 85·3%), from the public sector ( n = 51, 75%) and holding Nurse Unit Managers/Charge Nurse roles ( n = 39, 52·9%). From the 124 free-text responses, a total of 187 individual codes were identified focussing on bereavement care practices ( n = 145, 77·5%), educational provision to support staff ( n = 15, 8%) and organisational challenges ( n = 27, 14·4%). Bereavement care practices described use of memory boxes, cultural specificity, annual memorial services and use of community support services. Educational provision identified local in-service programmes, and national bereavement courses for specialist bereavement nurse coordinators. Organisational challenges focussed on lack of funding, especially for provision of bereavement follow-up. Conclusions This is the first Australasian-wide survey, and one of the few international studies, describing bereavement practices within intensive care, an important aspect of nursing practice. However, with funding for new bereavement services and education for staff lacking, there are continued challenges in developing bereavement care. Given knowledge about the impact of these areas of care on bereaved family members, this requires review. Relevance to clinical practice Nurses remain committed to supporting bereaved families during and following death in intensive care. With limited resource to support bereavement care, intensive care nurses undertake a range of bereavement care practices at time of death, and after death through family bereavement follow-up. [ABSTRACT FROM AUTHOR]

Background: Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care. Aim: To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members. Design: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants’ reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women’s caregiving experience. Setting/participants: A total of 36 women in the age ranges of ‘50–59 years’ through to ‘90–99 years’ from New Zealand. Results: Three themes regarding gender and caregiving were identified: the expectation women will care, women’s duty to care and women’s construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction. Conclusion: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers. [ABSTRACT FROM AUTHOR]

With the future focus on palliative and end-of-life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co-ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members ( n = 35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants' understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of 'generalism' and 'specialism' also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care. [ABSTRACT FROM AUTHOR]

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non-Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access-to-care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients ( Māori, Pacific and Asian self-identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non-users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community. [ABSTRACT FROM AUTHOR]

Aim: To explore nurses' experiences of a top-down change that involved the introduction of the Liverpool Care Pathway for the Dying Patient (LCP). Methods: Using a qualitative design, two focus groups were conducted with a total of ten nurses and five semi-structured individual interviews were conducted with senior nurse managers. Findings: The nurses viewed their experience with the LCP positively, highlighting an improvement in their knowledge base regarding care of the dying. 'Making sense' was a key theme that reflected how the nurses attempted to manage the impact of the change on their own practice and on the nursing team. Conclusion: Organisations need to invest skilled manpower, time, and resources into supporting nurses in their transitions. The benefits of such investment are an increased likelihood of implementing evidence-based care and sustained practice and organisational change. For patients and their families and friends this investment will result in tangible improvements in the delivery of treatment and care at a time in their lives when they are most vulnerable. [ABSTRACT FROM AUTHOR]

Aim: To determine staff perceptions of the impact of the Liverpool Care Pathway for the dying patient (LCP) in three aged residential care facilities in New Zealand. Methods: A mixed methodology approach was adopted, including the use of a survey, focus groups, and individual interviews. Findings: Fifteen of 194 staff participated in the focus groups (five nurses and nine health-care assistants). The interviewees included three GPs, one registered nurse, and one manager. The post-implementation survey response rate of 13% was poorer than the 32% response rate to a pre-implementation survey reported elsewhere. Nevertheless, there was congruence across the data sources. The participating staff perceived multiple benefits to residents, family, whãnau, and staff following implementation of the LCP. Conclusion: As a tool the LCP was effective in supporting, guiding, and prompting care delivery. However, challenges remained, particularly regarding environmental factors. [ABSTRACT FROM AUTHOR]

Aim To explore the views of general practitioners (GPs) regarding the involvement of the practice nurse (PN) in supporting older people with heart failure (HF) throughout the disease trajectory and identify specific implications for initiating advance care planning and improving end-of-life care. Methods Thirty GPs in a large urban area of New Zealand (NZ) participated in in-depth qualitative interviews. The interviews were recorded and transcribed verbatim. Data were entered into Nvivo software and were analysed thematically. Results While the GPs' experiences of working with the PN as contributor to the management of older patients with HF were positive overall, very minimal involvement of the PN in palliative and end-of-life care management was identified. However, significant potential for expansion was identified, particularly in the areas PNs are currently involved in, namely communication, education, and coordinating services, all of which are considered essential to effective palliative and end-of-life care. Conclusion The views of GPs are important as they employ PNs in NZ and are central to the ways in which the PN role can be developed in the future to improve services for older people with HF throughout the disease trajectory. Our study indicates that there is significant potential to expand the role of the PN throughout the HF disease trajectory, a development which could address some of the current gaps in palliative and end-of-life care management for these patients. Further research is required to develop and evaluate a model which optimizes the PN role throughout the disease trajectory of people with HF. [ABSTRACT FROM AUTHOR]

The aim of the study was to identify the time experiences of older patients and general practitioners (GPs). Secondary analysis of qualitative data collected from two longitudinal studies, one in the United Kingdom (UK) and the other in New Zealand (NZ), was carried out. The UK study involved interviews with 44 older people with heart failure and nine focus group discussions with primary health professionals during 2004-2005. The NZ study involved 79 interviews with 25 older people with heart failure and 30 telephone interviews with GPs during 2008-2009. Temporal reference frameworks function as background expectations and influence how patients and GPs experienced time and act as time controls. The key themes identified were: clock time was evident in how it structured the consultations; both patients and GPs valued needing time and for some GPs this involved creating space for emotional time. There were also tensions between needing time and wasting time; being known over time was important to both patients and GPs. For older people with heart failure improving their quality of care is essential and time is integral to this, not only the clock time and length of consultations. Identifying temporal reference frameworks provides an understanding that there are multiple times and exposes the influence of these in the lives of both the older people and GPs. [ABSTRACT FROM AUTHOR]

Background There is a paucity of studies which explore palliative care patients' involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability. Aim To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement. Methods Based on a larger pilot study to examine patients' satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique. Results The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a 'social death'. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research. [ABSTRACT FROM AUTHOR]

Options for the careful use of benzodiazepines in end-of-life care may be limited by several factors, including local availability and experience. Fifty-seven patients treated with midazolam for palliative sedation therapy (PST) in end-of-life care were matched by diagnosis, sex, and age with 57 patients treated with flunitrazepam. Comparisons included the number of PST interventions required, maintenance of consciousness, length of life remaining, and responses for a range of symptoms, using the patient's perspective where possible. Both benzodiazepines improved symptoms in all categories considered, with flunitrazepam appearing to be more effective. Patients on flunitrazepam survived longer after the initiation of PST (P = 0.01), remained conscious for longer (P = 0.019), and required fewer adjuvant treatment interventions (P = 0.008). There is a potential concern that patients may feel trapped by midazolam and not be able to communicate this. [ABSTRACT FROM AUTHOR]