This exploratory study examined general practitioners' (GPs) perspectives on delivering end-of-life care in the New Zealand residential aged care context. A general inductive approach to the data collected from semi-structured interviews with 17 GPs from 15 different New Zealand general practices was taken. Findings examine: (1) GPs' life experience; (2) the GP relationship with the facilities and provision of end-of-life care; (3) the GP interaction with families of dying residents; and (4) GP relationship with hospice. The nature of the GP relationship with the facility influenced GP involvement in end-of-life care in aged care facilities, with GPs not always able to direct a facility's end-of-life care decisions for specific residents. GP participation in end-of-life care was constrained by GP time availability and the costs to the facilities for that time. GPs reported seldom using hospice services for residents, but did use the reputation (cachet) associated with hospice practices to provide an authoritative buffer for their end-of-life clinical decisions when talking with families and residents. GP training in end-of-life care, especially for those with dementia, was reported as ad hoc and done through informal mentoring between GPs.
The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person’s Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person’s mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The “indigenous” model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.
BACKGROUND: Many ambulance personnel can withhold or terminate resuscitation on-scene, but these decisions are emotionally, ethically and cognitively challenging. Although there is a wealth of research examining training and performance of life-saving resuscitation efforts, there is little published research examining how ambulance personnel are prepared and supported for situations where resuscitation is unsuccessful, unwanted or unwarranted.
AIM: To identify and describe existing preparation and support mechanisms for ambulance personnel enacting decisions to terminate resuscitation and manage patient death in the field.
METHOD: Focus groups were held with senior ambulance personnel working in clinical education and peer support roles.
RESULTS: Participants believed professional and personal exposure to death and dying and positive social modelling by mentors were essential preparation for ambulance personnel terminating resuscitation and managing patient death. Ambulance personnel responded to patient death idiosyncratically. Key supports included on-scene or phone back-up during the event and informal peer and managerial support after the event.
CONCLUSION: Clinical and life experience is highly-valued by ambulance personnel who provide training and support. However, novice ambulance personnel may benefit from greater awareness and rehearsal of skills associated with terminating resuscitation and managing the scene of a patient death. Organisations need to acknowledge idiosyncratic staff needs and offer a variety of support mechanisms both during and after the event.
Information about traditional end-of-life care customs was gathered from Maori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Maori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Maori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Maori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Maori traditional caregiving customs. Subject material aligned with four dominant themes; (1) ‘whanau manaaki’, where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the ‘importance of wairuatanga’ provided insight into the place of Maori spirituality, (3) the ‘importance of rongoa rakau’ highlighted the role of traditional plant medicines; and (4) the ‘cultural support provided by health professionals’ reflected the care values health and palliative Q3 care professionals should ideally adopt.
Background: Research has indicated that clinical staff in long-term care often lack self-confidence in palliative care delivery, particularly at the end of life.
Goals: (a) To examine the contribution of age, palliative care education, palliative care work-related experience and psychological empowerment to palliative care delivery confidence and (b) to explore the social reality shaping those factors for long-term care staff.
Design: Explanatory sequential design.
Setting: Twenty long-term care facilities in two district health boards in New Zealand.
Participants: Phase 1:139 clinical staff. Phase 2:46 clinical staff who provided care in the last month of a residents' life.
Methods: Phase 1: Cross-sectional survey. Phase 2: Individual semi-structured interviews.
Results: Phase 1: Previous experience (ß = .319) and psychological empowerment (ß = .311) contribute most to predicting an increase in palliative care delivery confidence. Phase 2: Four factors underlay palliative care delivery confidence, (a) mentorship by hospice nurses or colleagues (b) contextual factors (organisational culture, resources and experience), (c) maturity and (d) formal education.
Conclusion: Organisational leadership should use multiple strategies (e.g. power-sharing, increased opportunities for mentorship) to improve staff palliative care delivery confidence.
Implications for Practice: This study adds to the literature in understanding the predictors of palliative care delivery confidence specific to long-term care staff. The results indicate that educational interventions must be contextually appropriate to achieve sustainable improvements in palliative care confidence and ultimately in resident care at the end of life.
BACKGROUND: Older people in long-term care facilities are at a greater risk of receiving care at the end of life that does not adequately meet their needs, yet staff in long-term care are often unprepared to provide palliative care. The objective of the study was to explore palliative care nurse specialists' experiences regarding the benefits of and barriers to the implementation of a palliative care educational intervention, Supportive Hospice Aged Residential Exchange (SHARE) in 20 long-term care facilities.
METHODS: Reflective logs (465), recorded over the course of the yearlong SHARE intervention by the three palliative care nurse specialists from two local hospices, who were the on-site mentors, were qualitatively analyzed by two researchers utilizing inductive content analysis.
RESULTS: Categories emerging from the logs include the importance of relationships, knowledge exchange, communication, and the challenges of providing palliative care in a long-term care setting.
CONCLUSION: Evidence from the logs indicated that sustained relationships between the palliative care nurse specialists and staff (registered nurses, healthcare assistants) as well as reciprocal learning were key factors supporting the implementation of this palliative care educational intervention. Challenges remain however in relation to staffing levels, which further emphasizes the importance of palliative care nurse specialist presence as a point of stability.
Background: An urgent need to improve palliative care in hospital has been identified. Moreover, service users consistently report care delivered by nurses in hospital as lacking compassion. Compassion is a fundamental component of nursing care and promoting compassionate care has been identified as a policy priority in many countries. To help address this within the hospital context, we recently completed research exploring bereaved family experiences of good end of life care in hospital. We found that family accounts of good care aligned with Nolan and Dewar's compassionate care framework and subsequently extended the framework to the bi-cultural context of Aotearoa, New Zealand.
Aims: In this discussion paper we explore synergies between our newly developed Kapakapa Manawa Framework: a bi-cultural approach to providing compassionate care at the end of life and the Fundamentals of Care. We argue that our framework can be used to support the implementation of the relational component of the Fundamentals of Care and the delivery of compassionate nursing practice in hospitals in Aotearoa, New Zealand.
Design: Discussion paper.
Methods: Review of relevant literature and construction of two vignettes describing good end of life care from the perspectives of bereaved family – one Maori and one non-Maori. The vignettes provide practical examples of how the values of the Kapakapa Manawa Framework can be enacted by nurses to provide compassionate care in alignment with the relationship component of the Fundamentals of Care.
Conclusions and relevance to clinical practice: Whilst the Kapakapa Manawa bi--cultural compassionate care framework has grown out of research conducted with people nearing the end of their lives, it has the potential to improve nursing care for all hospital inpatients. In addition, addressing the wider policy and health system factors detailed in the Fundamentals of Care will support its implementation in the clinical setting.
BACKGROUND: Around the world, many paramedics are authorised to withhold or terminate resuscitation. Research indicates this can be a challenging part of their role. Little is known about graduating paramedic student confidence, concerns and learning in this area.
METHODS: An online cross-sectional survey of students nearing completion of a paramedic degree in New Zealand, including piloting of a newly-developed confidence scale.
RESULTS: Seventy-two participants reported varying exposure to termination of resuscitation and patient death. Participants felt most confident providing technical procedurally-based care and least confident with non-technical skills. Participants' greatest concerns included making 'the right call', supporting grieving family, controlling emotions and encountering conflict. Clinical exposure with supportive mentoring, clinical simulation, peer reflection and resolved personal experience with death, were considered most useful for professional development.
CONCLUSIONS: Exposure to termination of resuscitation and management of the scene of a patient death is variable amongst graduating paramedics. Novice paramedics may benefit from opportunities to observe and rehearse non-technical skills including delivering death notification and communicating with bystanders and bereaved family. The Confidence with Resuscitation Decision-Making and Patient Death Scale has favourable psychometric properties and utility as an outcome measure for future research in this area.
BACKGROUND: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems.
AIM: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States).
DESIGN: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country.
RESULTS: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support.
CONCLUSION: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support.
BACKGROUND: Hospitals are important sites of end-of-life care, particularly for older people. A need has been identified to understand best practice in hospital end-of-life care from the service-user perspective.
AIM: The aim of this study was to identify examples of good care received in the hospital setting during the last 3 months of life for people dying in advanced age from the perspective of bereaved family members.
DESIGN: A social constructionist framework underpinned a qualitative research design. Data were analysed thematically drawing on an appreciative enquiry framework.
SETTING/PARTICIPANTS: Interviews were conducted with 58 bereaved family carers nominated by 52 people aged >80 years participating in a longitudinal study of ageing. Data were analysed for the 21 of 34 cases where family members were 'extremely' or 'very' satisfied with a public hospital admission their older relative experienced in their last 3 months of life.
RESULTS: Participants' accounts of good care aligned with Dewar and Nolan's relation-centred compassionate care model: (1) a relationship based on empathy; (2) effective interactions between patients/families and staff; (3) contextualised knowledge of the patient/family; and (4) patients/families being active participants in care. We extended the model to the bicultural context of Aotearoa, New Zealand.
CONCLUSION: We identify concrete actions that clinicians working in acute hospitals can integrate into their practice to deliver end-of-life care with which families are highly satisfied. Further research is required to support the implementation of the relation-centred compassionate care model within hospitals, with suitable adaptations for local context, and explore the subsequent impact on patients, families and staff.
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.
BACKGROUND: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported.
AIM: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature.
DESIGN: An integrative study design was undertaken using systematic methods.
DATA SOURCES: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms.
RESULTS: two quantitative, two qualitative and two mixed method studies were identified (n = 6). All community initiatives identified were professionally led, although three has consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial.
CONCLUSIONS: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.
CONTEXT: In most resource-rich countries, a large and growing proportion of older adults with complex needs will die while in a Residential Aged Care (RAC) facility.
OBJECTIVES: This study describes the impact of facility size (small/large), ownership model (profit/non-profit) and provider (independent/chain) on resident comfort and symptom management as reported by RAC staff.
METHODS: This retrospective 'after-death' study collected data decedent resident data from a subsample of 51 hospital-level residential aged care facilities in New Zealand. Symptom Management and Comfort Assessment in Dying at End of life with Dementia (SM-EOLD and CAD-EOLD) scales were administered post-mortem to Residential Aged Care staff most closely associated with 217 deceased residents. Data collection occurred from January 2016 to February 2017.
RESULTS: Results indicated that residents of large, non-profit facilities experienced greater comfort at the end of life (CAD-EOLD) as indicated by a higher mean score of 37.21 (SD = 4.85, 95%CI 34.4, 40.0 compared with residents of small for-profit facilities who recorded a lower mean score 31.56 (SD = 6.20 95% CI 29.6, 33.4). There was also evidence of better symptom management for residents of chain facilities, with a higher mean score for Symptom management score (SM-EOLD total score) recorded for residents of chain facilities (mean = 28.07, SD = 7.64, CI 26.47), 29.66) was higher in comparison to the mean score for independent facilities (mean = 23.93, SD = 8.72, 95% CI 21.65, 26.20).
CONCLUSION: Findings suggest that there are differences in the quality of end-of-life care given in Residential Aged Care based on size, ownership model, and chain affiliation.
Purpose of review This article provides an informed perspective on cardiovascular disease (CVD) and palliative care need among Maori New Zealanders. High Maori CVD risk factors will contribute to a sharp increase in older Maori deaths which has implications for health and palliative care service provision.
Recent findings CVD is New Zealand's leading cause of premature deaths and disability among Maori. A projected rise in older Maori deaths within the next 30 years will require increased palliative care. However, accessing palliative care and obtaining and understanding information can be challenging for families who are already often overburdened with high social and economic disadvantages. Meeting the high financial costs associated with end-of-life care make living with CVD challenging. Engaging with the health system's biomedical approach when holistic care is preferable can be a major barrier.
Summary Maori families provide the bulk of care at end-of-life, but they can become fatigued with the challenges that accompany long-term progressive illnesses, such as CVD. They are also burdened by the financial costs associated with end-of-life. It is often difficult for Maori to access palliative care and to obtain and understand information about the illness and treatment. Navigating an unfamiliar and complex health system, low health literacy among Maori and poor relationship building and communication skills of health professionals are significant barriers. Cultural safety training would help to increase health and cardiovascular professionals’ cultural understanding of Maori and their holistic end-of-life preferences; this could go some way to strengthen rapport building and communication skills necessary for effective engagement and informational exchanges. Increasing the Maori palliative care workforce and introducing cultural safety training among health professionals could help to bridge the gap. A current study to gather traditional care customs and present these to whanau and the health and palliative care sectors in the form of an online resource could contribute to this decolonizing objective.
Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them.
Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3-6 months after an older person's death and invited to take part in the current study.
Subjects: fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Maori and 32 non-Maori. The majority of the 58 carers were in their 60 s and were women..
Methods: guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within the transcripts, and feedback and discussion with participants.
Results: we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks.
Conclusions: this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.
Background: Ageing populations worldwide and a concomitant increase in chronic conditions translates into an increased demand for the delivery of palliative and end of life care by nurses. This increasing demand for palliative care provision may produce stressors resulting in negative outcomes such as burnout and compassion fatigue.
Aim: The purpose of this study was to explore burnout and compassion fatigue, as well as potential protective factors, among nurses in New Zealand.
Methods: An online survey was conducted with 256 registered nurses (between January 2016 and February 2017) recruited through nursing organisations and a large tertiary level hospital. Data analysis consisted of descriptive statistics, multivariate analysis of variance, Pearson correlations, and hierarchical multiple regression.
Results: Psychological empowerment and the commitment and challenge components of psychological hardiness significantly predicted lower scores for the burnout while previous palliative care education and challenge predicted lower scores for the secondary traumatic stress component of compassion fatigue. Significant predictors of compassion satisfaction included previous palliative care education, psychological empowerment and both the commitment and challenge components of psychological hardiness.
Conclusion: Nurses draw upon unique combinations of “psychological capital” to deal with caring for patients with life-limiting illnesses. Any interventions to increase nurse palliative care education uptake must be tailored to develop and support these internal resources.
INTRODUCTION: When faced with a patient in cardiac arrest, ambulance personnel must rapidly make complex decisions with limited information. Much of the research examining decisions to commence, continue, withhold or terminate resuscitation has used retrospective audits of registry data and clinical documentation. This study offers a provider-perspective which characterises uncertainty and highlights clinical, cognitive, emotional and physical demands associated with decision-making in the cardiac arrest context.
METHOD: Semi-structured interviews with a purposive sample of sixteen demographically diverse ambulance personnel, currently employed in a variety of emergency ambulance response roles across New Zealand.
RESULTS: All participants readily identified clinical, cognitive, emotional and ethical challenges associated with resuscitation decision-making. Four main themes were identified: grey areas; exceptional cases; scene challenges; and personal responses. A lack of information or a mix of favourable and unfavourable prognostic factors created decision-making uncertainty or "grey areas". Exceptional cases such as first-encounters also increased uncertainty and presented emotional, ethical and clinical challenges. Cardiac arrest scenes were often challenging, and participants described managing bystander expectations and responses and logistical limitations including adverse environmental conditions, fatigue and task-overload, and crew resource management.
CONCLUSION: This unique research presents a provider-perspective on the challenges faced by ambulance personnel deciding to commence, continue, withhold or terminate resuscitation efforts. Knowledge of personal values and strategies for managing personal responses appear to be central to certainty and coping. Simulated training should move beyond resuscitation task performance, to incorporate challenging elements and encourage ambulance personnel to explore their personal values, stressors and coping strategies.
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.
OBJECTIVES: Little is known about the cost of a palliative care approach in the UK, and there is an absence of robust activity and unit cost data. The aim of this study was to review evidence on the costs of specialist and generalist palliative care in the UK, and to explore different approaches used for capturing activity and unit cost data.
METHODS: A systematic review with narrative synthesis. Four electronic databases were searched for empirical literature on the costs of a palliative care approach in the UK, and a narrative method was used to synthesise the data.
RESULTS: Ten papers met our inclusion criteria. The studies displayed significant variation in their estimates of the cost of palliative care, therefore it was not possible to present an accurate aggregate cost of palliative care in the UK. The majority of studies explored costs from a National Health Service perspective and only two studies included informal care costs. Approaches to estimating activity and costs varied. Particular challenges were noted with capturing activity and cost data for hospice and informal care.
CONCLUSION: The data are limited, and the heterogeneity is such that it is not possible to provide an aggregate cost of palliative care in the UK. It is notable that the costs of hospice care and informal care are often neglected in economic studies. Further work is needed to address methodological and practical challenges in order to gain a more complete understanding of the costs of palliative care.