Community specialist palliative care services in New Zealand: a survey of Aotearoa hospices.

AIM: Community specialist palliative care (SPC) in Aotearoa New Zealand is provided by independent hospices. Substantial increase in demand for palliative care is projected in the next 20 years. We aimed to describe the current landscape of SPC services across Aotearoa whilst incorporating an equity lens. METHODS: A descriptive cross-sectional survey was undertaken to describe aspects of hospice service and populations served. Survey links were emailed to clinical, or service leads of hospices identified via Hospice New Zealand Website. RESULTS: All eligible hospices (n=32) completed the online survey. All hospices provided care at home, with 94% (n=30) also providing care for patients in aged residential care facilities. All 32 hospices provided symptom management, family and carer support and bereavement care. Six hospices (19%) did not provide afterhours cover. Fifteen (47%) hospices did not have Maori cultural position and median full time equivalent across all hospices for such position was one day per week. Only nine (28%) hospices provided palliative medicine specialist training. CONCLUSION: Areas of inconsistency were highlighted including afterhours access and cultural support for Maori. The capacity of the present system to address current and future shortages of palliative medicine specialist is questioned.

Palliative and end of life care in undergraduate medical education: a survey of New Zealand medical schools.

BACKGROUND: In New Zealand, 34% of deaths occur in the hospital setting where junior doctors are at the frontline of patient care. The death rate in New Zealand is expected to double by 2068 due to the aging population, but many studies report that graduates feel unprepared to care for people near the end of life and find this to be one of the most stressful parts of their work. International guidelines recommend that palliative and end of life care should be a mandatory component of undergraduate medical education, yet teaching varies widely and remains optional in many countries. Little is known about how medical students in New Zealand learn about this important area of clinical practice. The purpose of this study was to investigate the organisation, structure and provision of formal teaching, assessment and clinical learning opportunities in palliative and end of life care for undergraduate medical students in New Zealand. METHODS: Quantitative descriptive, cross-sectional survey of module conveners in New Zealand medical schools. RESULTS: Palliative and end of life care is included in undergraduate teaching in all medical schools. However, there are gaps in content, minimal formal assessment and limited contact with specialist palliative care services. Lack of teaching staff and pressure on curriculum time are the main barriers to further curriculum development. CONCLUSIONS: This article reports the findings of the first national survey of formal teaching, assessment and clinical learning opportunities in palliative and end of life care in undergraduate medical education in New Zealand. There has been significant progress towards integrating this content into the curriculum, although further development is needed to address barriers and maximise learning opportunities to ensure graduates are as well prepared as possible.

Preparing nurses for palliative and end of life care: A survey of New Zealand nursing schools.

BACKGROUND: Nurses play a vital role in the care of people with advanced life-limiting illnesses, so palliative and end of life care is an essential skill nurses need to learn. Despite numerous reports in the international literature about educational developments in this area, there are widespread inconsistencies in undergraduate education, and graduates continue to report feeling unprepared for this part of their work. Little is known about how New Zealand nursing students learn about this important area of clinical practice. OBJECTIVES: To obtain information about teaching content, organisation, delivery, assessment and clinical learning opportunities in palliative and end of life care in undergraduate nurse education in New Zealand. DESIGN: Quantitative descriptive cross sectional study. SETTINGS: Tertiary education institutions that provide the Bachelor of Nursing programme in New Zealand. PARTICIPANTS: Academic leads and course coordinators. METHODS: National online survey. RESULTS: A total of 13/18 (72%) educational institutions completed the survey. All integrate palliative and end of life care in their teaching with an identified coordinator at 12 (92%) institutions. Between 1 and 10 h of formal teaching is provided at 11 (85%) institutions where lectures and tutorials are most comon. Clinical placements with specialist palliative care providers are scarce and limited to senior students as elective placements. Assessment of student learning in palliative and end of life care is carried out at seven (54%) institutions, and formally evaluated at 12 (92%). Lack of teaching time and clinical placements with palliative care providers are barriers to increased learning opportunities in palliative and end of life care. CONCLUSIONS: This article provides comprehensive information about palliative and end of life care teaching in undergraduate nurse education in New Zealand. Teaching on this subject is not a mandatory requirement so there are inconsistencies in the teaching provided between educational institutions, and significant barriers to development. Mandatory competencies need to be introduced to ensure graduates have the knowledge, skills and attitudes required to provide optimal care for people near the end of life.

Funeral and interment practices of rural residents: A mixed methods study.

There are few studies on interment preferences and practices for people in remote and rural regions of developed countries. This mixed methods study in rural Australia collated data on funeral and interment practices with an ethnographic exploration of the post-death preferences of terminally-ill rural residents. In the region, between February 2015 and May 2016, 44% of decedents were cremated. Burial preferences reflected family traditions, generational connections to historic cemeteries, and the wish to instantiate belonging to people and place. Cremation provided the opportunity for ashes to be scattered at personally-significant places. Funeral planning was important for patients and family caregivers, and funerals are valued rural community rituals.

Social consequences of assisted dying: a case study.

AIM: To consider the possibility of consequences beyond the alleviation of perceived individual suffering, for families left behind, communities and society as a whole should the End of Life Choice Act gain public support in the September 2020 referendum in New Zealand. METHOD: This study used the Yin case study approach to undertake a single semi-structured in-depth interview with a participant who self-identified as having first-hand experience of assisted dying from a relative's perspective (in a country where this is legal). Thematic analysis was used to identify themes and trends from the interview transcript. RESULTS: Three key themes emerged from the interview: the potential for assisted dying becoming an expectation for others to pursue when unwell and possibly facing a life-threatening illness; the notion of stigma being associated with the individual using assisted dying legislation and the family left behind; and that there may be the potential for such legislation to produce a contagion effect. CONCLUSION: The introduction of assisted dying legislation into New Zealand culture provides a potential hotspot for family, community and social discord that may not be easily remedied. Further study in New Zealand is required to investigate whether a contagion effect of assisted dying is possible, and how as a society, we negotiate what could become a conflicted pathway potentially complicated by prejudice, judgement and stigma.

Is the bereavement grief intensity of survivors linked with their perception of death quality?

BACKGROUND: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process. AIMS: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity. METHODS: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests. FINDINGS: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated. CONCLUSION: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.

Educational needs of healthcare professionals and members of the general public in Alberta Canada, 2 years after the implementation of medical assistance in dying.

Medical assistance in dying (MAID) was implemented across Canada in June of 2016, after each Canadian province and territory had developed their own MAID processes. Over the first 2 years, just under 300 Alberta citizens received MAID services, a very small proportion (<0.5%) of all 52,000 decedents. An online 2017-2018 survey of Alberta healthcare providers and members of the general public was conducted to assess and compare their knowledge of MAID. A devised brief survey tool was posted online, with broad-based advertising for voluntary participants. The survey was taken down after 282 Albertans had participated (100+ healthcare professionals and 100+ members of the general public), a non-representative sample. Through SPSS data analysis, educational needs were clearly evident as only 30.5% knew the correct approximate number of MAID deaths to date, 33.0% correctly identified the point in life when MAID can be done, 48.9% correctly identified the locations where MAID can be performed, 49.3% correctly identified who can stop MAID from being carried out, and 52.8% correctly identified how MAID is performed to end life. Healthcare professionals were significantly more often correct; as were participants born in Canada, university degree holders, working persons, those who identified a religion, had experience with death and dying care, had direct prior experience with death hastening, thought adults had a right to request and receive MAID, had past experience with animal euthanasia, and had hospice/palliative education or work experience. Age, gender, and having previously worked or lived in a country where assisted suicide or euthanasia was performed were not significant for educational needs. These findings indicate new approaches to meet sudden assisted suicide educational needs are needed.

Death Anxiety Among New Zealanders: The Predictive Roles of Religion, Spirituality, and Family Connection.

The aim of this cross-sectional study was to investigate attitudes of New Zealanders toward death and dying. We administered an online version of Collett-Lester Fear of Death Scale and Concerns about Dying Instrument subscales to a representative sample of the New Zealand population. One thousand one people responded to the survey, where the largest age-group lay between 30 and 39 years. Respondents with strong religious beliefs showed strongest agreement to being anxious about their own death compared to those who have no religious beliefs (p = .0005). Conversely, participants with strong spiritual beliefs did not feel anxious about dying (=.0005). Participants with strong family connections believed their religion/spirituality helped them think about death compared to those with weak family connections (p > .0001). Our findings show that strong religious beliefs significantly predict higher levels of death anxiety compared to participants with strong spiritual beliefs. This is probably due to the cultural identity of those sampled.

Bereavement grief: A population-based foundational evidence study.

Information is needed on the incidence and prevalence of bereavement grief, and factors associated with severe or prolonged grief. Among 1,208 representative Canadian adults, 96% had experienced bereavement grief and 78% were actively grieving at interview. Grief levels were higher among women, Protestants, and Catholics, when the death was under 2 years previously, when a spouse, parent, or child had died, and when the perceived death quality was lower. This study reveals the importance of good deaths; they are essential for dying people and also those who mourn their deaths.

Place of death in the Snowy Monaro region of New South Wales: A study of residents who died of a condition amenable to palliative care.

OBJECTIVE: To describe the place of death of residents in a rural region of New South Wales. DESIGN: Cross-sectional quantitative study using death data collected from local funeral directors (in person and websites), residential aged-care facilities, one multipurpose heath service and obituary notices in the local media (newspapers/radio). SETTING: Snowy Monaro region (New South Wales Australia). PARTICIPANTS: Residents, with advanced frailty or one of 10 conditions amenable to palliative care, who died between 1 February 2015 and 31 May 2016. MAIN OUTCOME MEASURE: Place of death. RESULTS: Of 224 deaths in this period, 138 were considered amenable to palliative care. Twelve per cent of these deaths occurred in a private residence, 38% in the usual place of residence and 91% within the region. CONCLUSION: Most rural residents with conditions amenable to palliative care died in the region. Most did not die in their usual place of residence. Further qualitative work is needed to determine palliative care patients' and family caregivers' preferences for, and the importance placed on, place of death. While there may be a need to support an increase in home deaths, local rural hospitals and residential aged-care facilities must not be overlooked as a substitute for inpatient hospices.

Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end-of-life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end-of-life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self-reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end-of-life care in the home); providing practical assistance ("hands-on"); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end-of-life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.

Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data.

Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patients, the proportion dying at home ranged from 10.4% in Canada to 55.4% in Mexico, while hospital deaths ranged from 41.8% in Mexico to 78.9% in South Korea. Controlling for age, sex, and marital status, patients with chronic obstructive pulmonary disease were significantly less likely die at home rather than in hospital in nine countries. Our study found in almost all countries that those dying from chronic obstructive pulmonary disease as compared with those from lung cancer are less likely to die at home and at a palliative care institution and more likely to die in a hospital or a nursing home. This might be due to less predictable disease trajectories and prognosis of death in chronic obstructive pulmonary disease. LUNG DISEASE: IMPROVING END-OF-LIFE CARE: Structured palliative care similar to that offered to cancer sufferers should be in place for patients with chronic lung disease. Joachim Cohen at Vrije University in Brussels and co-workers examined international death certificate data collected from 14 countries to determine place of death for patients with lung cancer and chronic obstructive pulmonary disease (COPD). While patients with COPD suffer similar symptoms to lung cancer in their final days, few COPD patients receive palliative care or achieve the common wish of dying at home. This may be partly due to the inherent unpredictability of final-stage COPD compared with lung cancer. Cohen's team found that, with the exception of Italy, Spain, and Mexico, patients with COPD were significantly more likely to die in hospital than at home. They highlight the need for improved COPD palliative care provision.

A scoping review of bereavement service outcomes.

OBJECTIVE: This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness. METHOD: Our methods included: (1) a literature search for published English-language research articles from 2005-2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings. RESULTS: Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value-most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them. SIGNIFICANCE OF RESULTS: This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.

Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study.

OBJECTIVE: International studies have shown that patients want their spiritual needs attended to at the end of life. The present authors developed a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand (NZ) hospices. METHOD: A mixed-methods approach included 52 semistructured interviews and a survey of 642 patients, family members, and staff from 25 (78%) of NZ's hospices. We employed a generic qualitative design and analysis to capture the experiences and understandings of participants' spirituality and spiritual care, while a cross-sectional survey yielded population level information. RESULTS: Our findings suggest that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for (1) meaning, (2) peace of mind, and (3) a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs. SIGNIFICANCE OF RESULTS: As a result of our study, which was the first nationwide study in NZ to examine spirituality in hospice care, Hospice New Zealand has developed a spirituality professional development program. Given that spirituality was found to be important to the majority of our participants, it is hoped that the adoption of such an approach will impact on spiritual care for patients and families in NZ hospices.

A Cross-Sectional Comparison of Quality of Life Between Physically Active and Underactive Older Men With Prostate Cancer.

Men with prostate cancer experience many side effects and symptoms that may be improved by a physically active lifestyle. It was hypothesized that older men with prostate cancer who were physically active would report significantly higher levels of quality of life (QOL) as assessed by the WHOQOL-BREF and the WHOQOL-OLD. Of the 348 prostate cancer survivors who were invited to participate in the present postal survey, 137 men returned the questionnaires. Those who were physically active had significantly lower prostate specific antigen (PSA) scores and higher social participation than those insufficiently active. These findings offer some support for the benefits of physical activity (PA) within the prostate cancer population in managing the adverse side effects of their treatments on aspects of their QOL. Future research should more closely examine what types of PA best promote improvements in varying aspects of QOL and psychological well-being for prostate cancer survivors.

"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care.

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness. METHOD: A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia. RESULTS: The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed. SIGNIFICANCE OF RESULTS: This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.

Indigenous people's experiences at the end of life.

OBJECTIVE: The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research. METHOD: Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013. RESULTS: Some 18 studies met the inclusion criteria, and their findings were synthesized. "Preparing the spirit" for transition to the next life was the overarching theme. "Preparing the spirit" occurred within the context of "where we come from." Processes involved in "preparing the spirit" were healing, connecting, and protecting; through these processes, "what I want at the end of life" was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to "preparing the spirit." SIGNIFICANCE OF RESULTS: The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to "preparing the spirit" for the journey at the end of life.

Spirituality in Renal Supportive Care: A Thematic Review.

Chronic kidney disease is marked by a reduced life expectancy and a high symptom burden. For those who reach end-stage renal disease, the prognosis is poor, and this combined with the growing prevalence of the disease necessitates supportive and palliative care programmes that will address people's psychosocial, cultural and spiritual needs. While there is variation between countries, research reveals that many renal specialist nurses and doctors are reluctant to address spirituality, initiate end-of-life conversations or implement conservative treatment plans early. Yet, other studies indicate that the provision of palliative care services, which includes the spiritual dimension, can reduce symptom burden, assist patients in making advanced directives/plans and improve health-related quality of life. This review brings together the current literature related to renal supportive care and spirituality under the following sections and themes. The introduction and background sections situate spirituality in both healthcare generally and chronic kidney disease. Gaps in the provision of chronic kidney disease spiritual care are then considered, followed by a discussion of the palliative care model related to chronic kidney disease and spirituality. Chronic kidney disease spiritual needs and care approaches are discussed with reference to advanced care planning, hope, grief and relationships. A particular focus on quality of life is developed, with spirituality named as a key dimension. Finally, further challenges, such as culture, training and limitations, are explicated.

Spirituality: what is its role in pain medicine?

BACKGROUND: For many years, spirituality has been regarded as an integral aspect of patient care in fields closely allied to pain medicine such as palliative and supportive care. Despite this, it has received relatively little attention within the field of pain medicine itself. Reasons for this may include a lack of understanding of what spirituality means, doubtfulness of its relevance, an uncertainty about how it may be addressed, or a lack of awareness of how addressing spirituality may be of benefit. METHODS: A review of the literature was conducted to determine the changing conceptual frameworks that have been applied to pain medicine, the emergence of the biopsychospiritual approach and what that means as well as evidence for the benefits of incorporation of this approach for the management of pain. RESULTS: Although the concept of spirituality is broad, there is now greater consensus on what is meant by this term. Many authors and consensus panels have explored the concept and formulated a conceptual framework and an approach that is inclusive, accessible, relevant, and applicable to people with a wide range of health conditions. In addition, there is accumulating evidence that interventions that address the issue of spirituality have benefits for physical and emotional health. CONCLUSIONS: Given the firm place that spirituality now holds within other fields and the mounting evidence for its relevance and benefit for people with pain, there is increasing evidence to support the inclusion of spiritual factors as an important component in the assessment and treatment of pain.

Spiritual care and kidney disease in NZ: a qualitative study with New Zealand renal specialists.

AIM: People with chronic kidney disease have a shortened life expectancy and carry a high symptom burden. Research suggests that attending to renal patients' spiritual needs may contribute to an improvement in their quality of life. The aim of this qualitative study was to investigate the provision of spiritual care in New Zealand renal units from the perspective of specialists. METHODS: The study followed a generic qualitative approach and included semi-structured interviews with specialists recruited from New Zealand's ten renal centres. RESULTS: Five specialist doctors and nine specialist nurses were recruited for interviews. Understandings of spirituality were broad, with most participants having an inclusive understanding. Patients' spiritual needs were generally acknowledged and respected though formal spiritual assessments were not done. Consideration of death was discussed as an often-unexamined need. The dominant position was that the specialists did not provide explicit spiritual care of patients but there was some ad hoc provision offered through pre-dialysis educators, family meetings, Maori liaison staff members and the efforts of individuals. Chaplains were well used in some services. Participants had received no pre and little in-service training or education in spiritual care. Suggestions for improvements included in-service training, better utilization of chaplaincy services and training in advance care planning. CONCLUSION: Most participants indicated they would attempt to provide some form of spiritual care, either directly or by referring the patient to appropriate services. However, participants generally demonstrated a lack of confidence in addressing a patient's spiritual needs.