Background: Risk minimization in research with bereaved parents is important. However, little is known about which research methods balance the sensitivity required for bereaved research participants and the need for generalizable results.
Aim: To explore parental experiences of participating in mixed method bereavement research via a pilot study.
Design: A convergent parallel mixed method design assessing bereaved parents’ experience of research participation.
Setting/participants: Eleven parents whose child was treated for cancer at The Royal Children’s Hospital, Brisbane completed the questionnaire/interview being piloted (n = 8 mothers; n = 3 fathers; >6 months and <6 years bereaved). Of these, eight parents completed the pilot study evaluation questionnaire, providing feedback on their experience of participation.
Results: Participants acknowledged the importance of bereaved parents being central to research design and the development of bereavement programs. Sixty-three per cent (n = 5/8) of parents described completion of the questionnaire as ‘not at all/a little bit’ of a burden. Seventy-five per cent (n = 6/8) of parents opting into the telephone interview described participation as ‘not at all/a little bit’ of a burden. When considering the latest timeframes for participation in bereavement research 63% (n = 5/8) of parents indicated ‘no endpoint.’ Findings from the pilot study enabled important adjustments to be made to a large-scale future study.
Conclusions: As a research method, pilot studies may be utilized to minimize harm and maximize the potential benefits for vulnerable research participants. A mixed method approach allows researchers to generalize findings to a broader population while also drawing on the depth of the lived experience.
Despite the potentially devastating effects of a death on the lives of adolescents, little is known about their help-seeking experiences. We interviewed by telephone 39 bereaved adolescents on their help-seeking experiences. Thematic analysis resulted in three themes: Formal support, Informal support and School-related support. Participants provided a critical appraisal of positive and negative experiences, and noted barriers and facilitators for help-seeking. As adolescents bereaved through suicide may receive less social support, professional help is a much-needed auxiliary. Parental encouragement is important in accessing adequate professional help.
OBJECTIVES: On 19 June 2019, assisted dying became lawful in Victoria, the second most populous state in Australia. Section 8 of the Voluntary Assisted Dying Act is a legislative safeguard that is designed to ensure a patient's request for assistance to die is voluntary. This section prohibits health practitioners from initiating a conversation about assisted dying with the patient. This article explores the potential implications of this prohibition for effective communication between doctors and their patients, and the ability of doctors to provide high quality end-of-life (EOL) care in some cases.
METHOD: The authors reviewed and analysed literature on the importance of communication at the EOL including the need to understand and appropriately respond to Desire to Die or Desire to Hasten Death statements. A legal critique of section 8 of the Victorian Voluntary Assisted Dying Act was also undertaken to determine the scope of this new duty and how it aligns with existing legal obligations that would otherwise require doctors to provide information about EOL options requested by a patient.
RESULTS: Contemporary literature suggests that open and honest communication between doctor and patient including the provision of information about all EOL options when sought by the patient represents good clinical practice and will lead to optimal EOL care. The provision of such information also reflects professional, ethical and legal norms.
CONCLUSION: Despite (arguably) promoting an appropriate policy objective, the legislative prohibition on health professionals initiating conversations about voluntary assisted dying may, in cases where patients seek information about all EOL options, lead to less optimal patient outcomes.
OBJECTIVE: While 60%-70% of people would prefer to die at home, only 14% do so. Families in a rural environment feel particularly unsupported in fulfilling this last wish of their loved one, which reflects the general shortage of health care workforce and resource allocation to institutions. The aim of this study was to describe the experience of families and nurses with extended rural palliative care to support dying at home.
DESIGN: Semistructured interviews were conducted with family members and nurses. Process data were included to describe the frequency and nature of contacts. The results were analysed using descriptive analysis.
SETTINGS: A rural town in Northern Victoria, Australia (Australian Statistical Geography Standard-Remoteness Area).
PARTICIPANTS: Ten family members and four nurses were interviewed.
MAIN OUTCOME MEASURES: Experience with the extended palliative care service and with the dying at home process.
RESULTS: All patients in the project died at home. The families were very positive about the extended palliative care; it increased their familiarity with dying, and had a positive impact on bereavement. The nurses were equally positive, but also commented on the need to debrief and on the heavy emotional toll the work takes.
CONCLUSIONS: Rural care support for dying at home can be realised. This study has demonstrated the positive impact of an end-of-life service, while at the same time pointing to concerns of the nursing staff on the suitability of the model of care. Health care workers and communities alike need to be educated and have conversations on end-of-life care.
BACKGROUND AND AIMS: The highest healthcare expenditures occur towards end of life. Costs relate to hospital admissions and investigations to diagnose, prognosticate and direct treatment. This Australian study compared cost of investigations in the last 72 h of life between an inpatient palliative care unit (PCU) and a tertiary hospital.
METHOD: We retrospectively reviewed fifty adult medical and surgical patients (admitted for >72 h and who died in hospital) from the PCU and referring tertiary centre, between March and July 2016. Patients in the emergency department, intensive care, medical assessment, paediatric and obstetric units were excluded. All patients had an acute resuscitation plan and were on the 'Care of the Dying' pathway.
RESULTS: Expenditure was less if palliative care were the primary caregivers, with statistically significant differences in amount of imaging (p < 0.001) and pathology (p < 0.001) ordered. There was no difference in microbiology (p = 0.172) and histology (p~1) ordered. Total cost of investigations for PCU patients was $1340.60 (4 of 50 patients), compared with $9467.78 (29 of 50 patients) in the tertiary hospital. PCU patients had longer length of stays (15.54 days vs 11.06 days) but cost less per bed day ($868.32 vs $878.79 respectively).
CONCLUSION: Inpatient PCUs are less likely to order investigations and are more cost-effective. A prospective study comparing an inpatient PCU, and patients at a tertiary centre, with and without consult liaison palliative care input, would be worthwhile to see if outcomes remain the same and if consult liaison palliative care affects the investigative burden.
Background: Diabetes at the end of life (EoL) is characterized by blood glucose fluctuations that result from decreased oral intake, side effects of medications, altered physiology, and end-stage organ failure. With limited life expectancy and the presence of comorbidities, diabetes management can be challenging. While there is little clinical evidence to guide decision-makers, current practice depends on empiric and expert recommendations.
Objective: To evaluate the current prescribing patterns and monitoring parameters in diabetes management at the EoL in patients at two palliative care inpatient units.
Design: Retrospective clinical chart review.
Setting/subjects: Adult patients attending the Palliative and Supportive Care Services at St Vincent's Private Hospital and Mater Adults Hospital, South Brisbane, Australia over a 24-month period, from October 2014 to October 2016.
Results: A total of 145 charts were analysed. 139 patients were identified as having received glucose-lowering therapy (51% female, median age 71 years). Insulin therapy was used in 74 (51%) patients and oral and/or non-insulin therapies in 62 (43%). Blood glucose level monitoring was carried out a median of 4 times, range 1–6 times daily. Either continuously or at some stage of their treatment, 74 patients were receiving corticosteroids.
Conclusion: Insulin therapy appears to be the safest and most effective approach, taking into consideration the patient needs and pharmacodynamic profile of each preparation. Without evidence-based guidelines on the optimal intervention to control diabetes at the EoL, therapy plans must be individualized to prevent symptomatic hyper- and hypoglycaemia with minimal patient discomfort and adverse drug reactions.
OBJECTIVE: To identify the attitudes of Australian and New Zealand geriatricians to legalisation of voluntary assisted dying.
METHODS: An anonymous, voluntary, online survey of Australian and New Zealand Society for Geriatric Medicine (ANZSGM) members.
RESULTS: A total of 226 members completed the survey equating to a 20% response rate. About 24% of respondents supported legalisation of voluntary assisted dying, whilst 53% opposed. If voluntary assisted dying was legalised, 12% would be willing to prescribe to an appropriate patient, and 61% would be willing to refer them onto a third party. Risk to vulnerable patients was the most important concern identified.
CONCLUSIONS: Support for voluntary assisted dying among surveyed ANZSGM members is low, but varies according to patient circumstances. Key areas of concern highlighted were risk to vulnerable patients, estimating prognosis, and capacity assessments. Further training is required for doctors on discussing voluntary assisted dying options, estimating prognosis, and capacity assessments prior to implementation.
BACKGROUND: At the end of life, cancer survivors often experience exacerbations of complex comorbidities requiring acute hospital care. Few studies consider comorbidity patterns in cancer survivors receiving palliative care.
AIM: To identify patterns of comorbidities in cancer patients receiving palliative care and factors associated with in-hospital mortality risk.
DESIGN, SETTING/PARTICIPANTS: New South Wales Admitted Patient Data Collection data were used for this retrospective cohort study with 47,265 cancer patients receiving palliative care during the period financial year 2001-2013. A latent class analysis was used to identify complex comorbidity patterns. A regression mixture model was used to identify risk factors in relation to in-hospital mortality in different latent classes.
RESULTS: Five comorbidity patterns were identified: 'multiple comorbidities and symptoms' (comprising 9.1% of the study population), 'more symptoms' (27.1%), 'few comorbidities' (39.4%), 'genitourinary and infection' (8.7%), and 'circulatory and endocrine' (15.6%). In-hospital mortality was the highest for 'few comorbidities' group and the lowest for 'more symptoms' group. Severe comorbidities were associated with elevated mortality in patients from 'multiple comorbidities and symptoms', 'more symptoms', and 'genitourinary and infection' groups. Intensive care was associated with a 37% increased risk of in-hospital deaths in those presenting with more 'multiple comorbidities and symptoms', but with a 22% risk reduction in those presenting with 'more symptoms'.
CONCLUSION: Identification of comorbidity patterns and risk factors for in-hospital deaths in cancer patients provides an avenue to further develop appropriate palliative care strategies aimed at improving outcomes in cancer survivors.
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.
OBJECTIVE: This study examined advance care planning as delivered by general practice registrars and recently fellowed GPs in New South Wales rural settings. The facilitators and barriers to advance care planning uptake in these areas were investigated, as well as the state of general practice training on advance care planning.
DESIGN: Qualitative descriptive methodology, involving semi-structured face-to-face and telephone interviews.
SETTING: Primary care.
PARTICIPANTS: General practice registrars and recently fellowed GPs in New South Wales rural settings. Definition of rural using the Australian Standard Geographical Classification - Remoteness Area. Thirteen participants were included in the study.
MAIN OUTCOME MEASURES: Thematic analysis of interview transcripts elucidated key issues emerging from participants' accounts.
RESULTS: Key barriers included doctor-dependent uptake, demands on doctor's time and the limited relevant resources available. Facilitators recognised were patient control in end-of-life care and long-standing relationships between GPs and their patients. Uptake among patients was low, and minimal training on advance care planning reported.
CONCLUSION: The lack of training opportunities in advance care planning during vocational training, especially when combined with the essential role played by rural GPs in initiating advance care planning and providing end-of-life care, appears to be a major problem that might contribute to poor uptake among patients in rural areas. This study demonstrated, however, the significant benefits that advance care planning could bring in patients living in rural communities if delivered effectively. Given that rural GPs face a number of barriers to providing routine health care, these results highlight an important need to provide GPs and rural communities with support, education, incentive, better administrative tools, options and greater awareness of advance care planning.
Background: With over half of expected deaths occurring in acute hospitals, and a workforce not trained to care for them, good quality end-of-life care in these settings is hard to achieve. The National Consensus Statement on Essential Elements for Safe and High-Quality End-of-Life Care has been translated into e-learning modules by the End of Life Essentials project, and this study aims to demonstrate how clinicians interpret the Consensus Statement in their day-to-day practice by answering the question at the end of each module: 'Tomorrow, the one thing I can change to more appropriately provide end-of-life care is…'.
Methods: The modules were developed by a palliative care educator with the support of a peer review group and were piloted with 35 health professionals. Pre-post module evaluation data were collected and during a 10-month period from 2016 to 2017 a total of 5181 individuals registered for the project accessing one or more of the six modules. The data from 3201 free-text responses to the post hoc practice change question have been analysed, and themes generated.
Findings: Five themes are derived from the data: communication, emotional insight, professional mindset, person-centred care and professional practice.
Conclusion: Learners who have completed End of Life Essentials have shared the ways they state they can change their practice tomorrow which may well be appreciated as a clinical response to the work by the Australian Commission on Safety and Quality in Health Care in leading and coordinating national improvements in quality and safety in healthcare in Australia. While intent cannot guarantee practice change, theory on intention-behaviour relations indicate that intentions have a strong association with behaviour. This indicates that the modules have the ability to influence end-of-life care in acute hospitals.
Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia.
Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia.
Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care.
Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.
Aim: To develop and implement a region wide skills matrix for palliative care and district nurses in rural Victoria in order to identify and address individual learning needs and appropriate professional development strategies based on the Australian National Palliative Care Standards. This study is the first in a series of papers discussing and evaluating the development and implementation of a skills matrix. Future papers will report on participants’ data reporting.
Methods: The development and implementation of a skills matrix for palliative care nurses was based on using several evidence-based strategies involving four main stages. There were: stakeholder consultation, collaboration, consolidation and implementation. The initial stage of development of the matrix involved consultation with regional stakeholders to establish and refine the project objectives. The second stage involved collection of information from regional stakeholders; brainstorming and discussion of the technical skills required for palliative care and the cross over with district nursing. The third stage involved a facilitated process whereby action plans were devised and the final stage involved a plan for the survey dissemination and evaluation of the training needs. Other evidence-based strategies used were Benner’s theoretical model of clinical competence, the Australian National Palliative Care Standards and the triple C model of project implementation.
Results: This study reported on the development and implementation of a self-assessment of competencies skills matrix for nurses working in palliative care based on the Australian National Standards of palliative care used by services. The matrix included all the aspects covered by the Australian National Palliative Care Standards and mapped them to various competencies using Benner’s model ranging from novice to expert. The availability of a skills matrix tool to self-assess is important to keep track of the clinical competencies gained by palliative care nurses. Targeted educational interventions identified by the skills matrix have the potential to improve quality of care provided in the palliative care setting.
Conclusion: The successful development and implementation of the palliative skills matrix across the Gippsland region relied on using several evidence-based strategies to standardise the competencies across the palliative care setting in rural Victoria, Australia. Examples of these strategies included using Benner’s theoretical competency model, the Australian National Palliative Standards and the triple C model, which included stakeholders’ consultation, collaboration and consolidation.
Aim: To explore medication safety issues faced by general and palliative care community nurses working in rural and remote palliative care domiciliary settings.
Method: An online survey for nurses working in rural communities was conducted across the South East region of rural Victoria, Australia. Nurses from 18 community based health care organisations across the region were invited to participate in an anonymous survey addressing medication safety issues in the palliative care settings. Qualitative data obtained from the open-ended survey questions were analysed inductively.
Results: A total of 29 nurses completed the survey (response rate 28% from potential respondents). Most of the nurses were working in a rural practice providing a mixed model of community palliative care and community nursing. Medication safety issues raised by the nurses included; errors associated with dose administration aids, frequency of medications reviews undertaken by clinical pharmacists of clients’ medications, high occurrence of medications error reporting, lack of awareness of medications initiated by nurses and cytotoxic medications handling.
Conclusion: Targeted interventions addressing the identified issues raised by community general and palliative care nurses have the potential to improve medication safety in the domiciliary palliative care setting.
Population-based surveys suggest that up to 70% of Australians wish to receive care at home when faced with advanced terminal illness; however, only 14% achieve this goal. This is a comparatively low rate compared to other developed countries and due to a myriad of factors, including care fragmentation, lack of advance care planning, inadequate symptom control and limited availability of community-based palliative care services.
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Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
BACKGROUND: The provision of end-of-life care remains a significant component of work for clinicians in critical care settings. Critical care nurses report that this area of practice receives limited attention in education and training.
OBJECTIVES: The objective of this study was to identify and describe the end-of-life care content in postgraduate critical care nursing programs in Australia.
METHODS: Using a descriptive exploratory research design, an Internet search was undertaken in August 2015, identifying 17 education providers offering postgraduate critical care nursing programs. Thirteen individuals agreed to participate in a structured telephone interview regarding end-of-life content in their postgraduate program. Descriptive statistics were calculated to summarise the data obtained.
RESULTS: Twelve participants reported that end-of-life care content was explicitly addressed in their postgraduate critical care nursing programs, yet variation in actual content areas covered was evident. The majority of programs addressed content related to organ donation (92%) and legal and ethical issues (77%). However, content least commonly identified as covered pertained to the work of the nurse in providing direct clinical care to the patient at the end of life and his or her family, including the physical changes experienced by the dying patient (31%), respiratory management encompassing withdrawal of ventilation and symptom management (23%), emotional support of family (23%), care of the body after death (23%), and the process of withdrawing life-sustaining treatment (15%). Participants (92%) agreed that end-of-life content was important in postgraduate critical care nursing programs, with 77% of participants agreeing that more time should be allocated to end-of-life content.
CONCLUSIONS: This study provides preliminary evidence of the variation in end-of-life content in postgraduate critical care nursing programs in Australia. Addressing gaps in end-of-life care content in formal education, including clinical care of the dying patient, is urgently needed to address the complexity of this phase of care that is so frequently provided in critical care units.
This article presents qualitative data to explore the experience of farming family members faced with accidental or suicide death and understand how this is experienced within the farming context. Individual semistructured interviews were conducted with 25 members of Australian farming families bereaved by suicide or accidental death. Qualitative data was thematically analyzed. Three interconnected themes were identified: acceptance of risk, normalization of death, pragmatic behavior patterns and connection to place. Bereavement and reconstruction of meaning following suicide or accidental death for farming families is influenced by the cultural, social, geographical, and psychological contexts of farming families. This article challenges traditional conceptions of suicide and accidental death as necessarily experienced as “violent” or “traumatic,” bereavement as experienced similarly across western cultures, and the reaction to suicide or accidental death as one that challenges people’s understanding of their world and leaves them struggling to find a reason why the death occurred.
PURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single open-ended question from a larger survey are presented.
METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data.
RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings.
CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
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.