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.
Introduction: Staff in residential aged care (RAC) face increasing exposure to death and dying provoking coping-related responses. This study reports on research exploring the role of religious/spiritual belief in staff coping with death and dying in RAC homes.
Method: Utilising a mixed methods, concurrent triangulation design, data from interviews and questionnaires with 113 RAC staff were analysed to explore the relationship between staff members’ religious/spiritual beliefs and coping with resident deaths within the context of 50 RAC facilities.
Results: Participants appeared to have distinctly different experiences of the role of religious/spiritual beliefs in their attitudes toward death and dying – as reflected linguistically in how they described it. Strong religious/spiritual influence and religious affiliation were associated with lower scores for burnout. Level of religious/spiritual influence does make a difference in the strategies employed by staff in coping with death and dying.
Conclusion: Given the potential benefits associated with religious/spiritual beliefs, RAC facility management would be well advised to foster a workplace culture that supports and encourages spiritual/religious expression among facility staff. Greater understanding of the role of religious/spiritual beliefs in helping staff to make sense of the end-of-life experience can provide the basis for the development of staff supports enabling both improved staff well-being and resident end-of-life care.
Background: On average, people will experience 2.28 hospital admissions in the last year of life with the likelihood of a hospital admission increasing in the last 2 weeks of life. Reducing hospital admissions has become a focus for high-income countries as they work to manage the financial implications of an ageing population. However, the circumstances by which patients with palliative care needs are admitted to hospital remain poorly understood.
Aim: To explore the circumstances of hospital admissions for patients with palliative care needs.
Design: Cross-sectional survey design using face-to-face questionnaires.
Setting/participants: In total, 116 patients aged >18 years admitted to a tertiary hospital with palliative care needs.
Results: Those with a non-cancer diagnosis and those aged over 75 years were less likely to have hospice involved prior to the admission (x2 (1, n = 116) = 10.19, p = 0.00). Few patients recognised community services as having a role in enabling them to remain at home. Those with cancer placed a significantly higher priority on receiving information about their illness (t(114) = 2.03, p = 0.04) and receiving tests and investigations (t(114) = 2.37, p = 0.02) in hospital.
Conclusion: This study has demonstrated the complexity of hospital admissions in palliative care. Further research is needed to explore patient perceptions of care at home and the role of community services to enable them to remain at home. Understanding the motivation to come to hospital in the context of an incurable illness and limited treatment options may help to inform the development of services that can enable better care at home.
BACKGROUND: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age.
AIM: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers.
DESIGN: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis.
SETTING/PARTICIPANTS: A total of 58 participants (19 Maori and 39 non-Maori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews.
RESULTS: A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death.
CONCLUSION: Our study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.
BACKGROUND: General practitioners have overall responsibility for community care, including towards end of life. Current policy places generalists at the centre of palliative care provision. However, little is known about how patients and carers understand the general practitioner's role.
AIMS: To explore patient and carer perspectives of (1) the role of the general practitioner in providing palliative care to adult patients and (2) the facilitators and barriers to the general practitioner's capacity to fulfil this perceived role.
DESIGN: Systematic literature review and narrative synthesis.
DATA SOURCES: Seven electronic databases (MEDLINE, Embase, PsycINFO, BNI, CINAHL, Cochrane and HMIC) were searched from inception to May 2017. Two reviewers independently screened papers at title, abstract and full-text stages. Grey literature, guideline, hand searches of five journals and reference list/citation searches of included papers were undertaken. Data were extracted, tabulated and synthesised using narrative, thematic analysis.
RESULTS: A total of 25 studies were included: 14 employed qualitative methods, 8 quantitative survey methods and 3 mixed-methods. Five key themes were identified: continuity of care, communication between primary and secondary care, contact and accessibility, communication between general practitioner and patient, and knowledge and competence.
CONCLUSION: Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development.
BACKGROUND: Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers - Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received.
AIM: To highlight the differences between family members' reports of dignity in the care provided to their relatives at the end of life, as reported in the VOICES questionnaire, and their narratives about the care their relatives received.
METHODS: A total of 21 cognitive interviews were conducted during a New Zealand pilot of the VOICES questionnaire.
RESULTS: Discrepancies between ratings of dignity and the lived experience of care suggest that lay understandings of dignity may not be congruent with that of health care providers.
CONCLUSIONS: Bereaved family members' self-reports of dignity in end-of-life care captured using survey methods alone are inadequate to understand the complex ways in which individuals conceptualise and experience dignity within a health care context. The authors advocate consideration of multiple, complementary approaches to gathering consumer experiences of end-of-life care, as well as research which enables service users to interrogate what dignity in care means in an end-of-life context.
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 Maori.
METHODS: Data on end of life preferences were gathered from 147 Maori (aged >80 years) and 291 non- Maori 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 Maori specific subsections was used.
RESULTS: The top priority for both Maori and non-Maori 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 Maori participants wanted spiritual practices at end of life than male Maori participants. More male non-Maori participants wanted to be resuscitated than female non- Maori 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.