Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
Objectives: Common terminal phase symptoms include pain, dyspnoea, anxiety, terminal restlessness, nausea and noisy breathing. This study identified the proportion of community pharmacies across two Australian states stocking medicines useful in managing terminal phase symptoms, while exploring factors considered predictive of pharmacies carrying these medicines.
Methods: Community pharmacies from across the states of New South Wales (NSW) and South Australia (SA) were concurrently mailed a survey. Respondents were asked questions relating to medicines stocked, expiry date of stock, awareness of people with palliative care needs and demographic characteristics of the pharmacy. A ‘prepared pharmacy’ was defined as a pharmacy that held medicines useful in the management of terminal phase symptoms.
Results: The proportion of prepared pharmacies across NSW and SA was 21.9%. Multiple logistic regression demonstrated eight predictors of prepared pharmacies, of which awareness of people with palliative needs using their service was the strongest.
Conclusions: One-fifth of community pharmacies carry formulations useful in managing terminal phase symptoms. The main factor associated with this was awareness of people with palliative needs using the pharmacy. Strategies that engage with pharmacists in anticipation of the terminal phase are critical, supporting people with palliative needs to remain at home to die, if desired.
BACKGROUND: In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.
MAIN TEXT: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Drawing primarily on Ruger's model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.
CONCLUSIONS: While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.
In 2019, the Voluntary Assisted Dying Act 2017 (Vic) came into force. Thereupon, Victoria became the first State in Australia to enact such a law since the Commonwealth of Australia overturned Northern Territory legislation in 1997. Because of the difficulties in the introduction of Victorian law, it is extremely conservative, with many safeguards. There are significant limitations to this law which will result in significant ethical difficulties for medical practitioners and their patients. Four problematic areas of the law are discussed: the prohibition on health practitioners introducing the subject, introduction of the subject of voluntary assisted dying to patients; difficulties in obtaining access to treatment in certain populations in Victoria; the arbitrary minimum age of 18 to be able to access voluntary assisted dying; and the difficulties for patients and practitioners in evaluating the capacity of patients with mental illness and cognitive difficulties. Practical solutions to these difficulties will be proffered and discussed.
BACKGROUND: There is a gap in knowledge about the kind and quality of care experienced by hospital patients at the end of their lives.
AIMS: To document and compare the patterns in end-of-life care for patients dying across a range of different medical units in an acute care hospital.
METHODS: A retrospective observational study of consecutive adult inpatient deaths between 1 July 2010 and 30 June 2014 in four different medical units of an Australian tertiary referral hospital was performed. Units were selected on the basis of highest inpatient death rates and included medical oncology, respiratory medicine, cardiology and gastroenterology/hepatology.
RESULTS: Overall, 41% of patients died with active medical treatment plans, but significantly more respiratory and cardiology patients died with ongoing treatment (46 and 75% respectively) than medical oncology and gastroenterology patients (each 27%, P < 0.05). More medical oncology and gastroenterology patients were recognised as dying (92 and 88%) compared with 72% of respiratory and only 38% of cardiology patients (P < 0.001). Significantly, more medical oncology patients were referred to palliative care and received comfort care plans than all other patient groups. However, the rate of non-palliative interventions given in the final 48 h was not significantly different between all four groups.
CONCLUSIONS: There were differences in managing the dying process between all disciplines. A possible solution to these discrepancies would be to create an integrated palliative care approach across the hospital. Improving and reducing interdisciplinary practice variations will allow more patients to have a high-quality and safe death in acute hospitals.
INTRODUCTION: Indigenous patients with life-limiting conditions have complex needs, experience reduced access to and uptake of treatment, and have lower utilisation of palliative care services than the general population. Lack of understanding of the role of palliative care and poor availability of culturally safe specialist palliative care services impact on Indigenous people's end-of-life decision-making.
METHODS: To understand Aboriginal people's perspectives and experiences at the end of life, an exploratory study using facilitated group discussions in community settings in a region of Western Australia was undertaken. Local Aboriginal people were engaged to talk frankly about their wishes and concerns around end of life. The community consultations included two meetings at the local Aboriginal corporation, an evening meeting for invited community members, a meeting at the local Aboriginal community controlled health service and two further meetings of community members at local gathering places. These were supplemented by the analysis of previous in-depth video-recorded interviews that were undertaken with Aboriginal people with cancer reporting on their concerns and wishes.
RESULTS: The community consultations raised considerable discussion about wills, where to die, burial versus cremation, and the cost of funerals. Possibilities emerging from participants' reflections on the issue were public celebrations to honour someone's life, the potential use of sorting cards to help discussions about end-of-life personal wishes, and interest in making and decorating coffins. Aboriginal people with cancer raised similar issues, and focused on avoiding family disharmony by ensuring their family were aware of their end-of-life wishes.
CONCLUSION: Within a safe space, Aboriginal people were happy to talk about end-of-life wishes, although certain aspects of death remain contentious. Sorting cards, ceremonies, education and care roles involving Aboriginal people offer potential means for effectively engaging Aboriginal people in preparing for death and dealing with grief.
Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
OBJECTIVES: Our aim was to (1) describe the clinical characteristics and symptoms of people diagnosed with dementia at the time of admission to inpatient palliative care; and (2) compare the nature and severity of these palliative care–related problems to patients with other chronic diseases.
DESIGN: Descriptive study using assessment data on point of care outcomes (January 1, 2013, to December 31, 2018).
SETTING: A total of 129 inpatient palliative care services participating in the Australian Palliative Care Outcomes Collaboration.
PARTICIPANTS: A total of 29,971 patients with a primary diagnosis of dementia (n = 1,872), lung cancer (n = 19,499), cardiovascular disease (CVD, n = 5,079), stroke (n = 2,659), or motor neuron disease (MND, n = 862).
MEASUREMENTS: This study reported the data collected at the time of admission to inpatient palliative care services including patients' self-rated levels of distress from seven common physical symptoms, clinician-rated symptom severity, functional dependency, and performance status. Other data analyzed included number of admissions, length of inpatient stay, and palliative care phases.
RESULTS: At the time of admission to inpatient palliative care services, relative to patients with lung cancer, CVD, and MND, people with dementia presented with lower levels of distress from most symptoms (odds ratios [ORs] range from .15 to .80; P < .05 for all) but higher levels of functional impairment (ORs range from 3.02 to 8.62; P < .001 for all), and they needed more assistance with basic activities of daily living (ORs range from 3.83 to 12.24; P < .001 for all). The trends were mostly the opposite direction when compared with stroke patients. Patients with dementia tended to receive inpatient palliative care later than those with lung cancer and MND.
CONCLUSION: The unique pattern of palliative care problems experienced by people with dementia, as well as the skills of the relevant health services, need to be considered when deciding on the best location of care for each individual. Access to appropriately trained palliative care clinicians is important for people with high levels of physical or psychological concerns, irrespective of the care setting or diagnosis.
BACKGROUND: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood.
AIM: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma.
DESIGN: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods.
SETTING/PARTICIPANTS: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres.
RESULTS: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life.
CONCLUSION: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.
Background: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement.
Objectives: (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research.
Method: The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest.
Results: The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515; missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010–30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses.
Conclusion and implications: In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.
Background: General practitioners’ (GPs) play a central role in facilitating end-of-life discussions with older patients nearing the end-of-life. However, prognostic uncertainty of time to death is one important barrier to initiation of these discussions.
Objective: To explore GPs’ perceptions of the feasibility and acceptability of a risk prediction checklist to identify older patients in their last 12 months of life and describe perceived barriers and facilitators for implementing end-of-life planning.
Methods: Qualitative, semi-structured interviews were conducted with 15 GPs practising in metropolitan locations in New South Wales and Queensland between May and June 2019. Data were analysed thematically.
Results: Eight themes emerged: accessibility and implementation of the checklist, uncertainty around checklist’s accuracy and usefulness, time of the checklist, checklist as a potential prompt for end-of-life conversations, end-of-life conversations not an easy topic, end-of-life conversation requires time and effort, uncertainty in identifying end-of-life patients and limited community literacy on end-of-life. Most participants welcomed a risk prediction checklist in routine practice if assured of its accuracy in identifying which patients were nearing end-of-life.
Conclusions: Most participating GPs saw the value in risk assessment and end-of-life planning. Many emphasized the need for appropriate support, tools and funding for prognostic screening and end-of-life planning for this to become routine in general practice. Well validated risk prediction tools are needed to increase clinician confidence in identifying risk of death to support end-of-life care planning.
Purpose: This research explored the role of Australian Speech-Language Pathologists (SLPs) to identify SLP experiences and practices regarding adult palliative care (PC) management.
Method: Utilising mixed methods, phase one comprised a literature scoping review of SLP practices in PC. Phase two involved a survey compiling demographic data of Australian SLPs working in adult PC. Phase three involved in-depth interviews exploring SLP experiences in PC.
Result: It was found that minimal resources or published literature existed regarding SLPs in PC, however the available literature indicated SLPs can be valuable and influential members of a PC team. Interviewed SLPs acknowledged their proficiency in end-of-life communication and swallowing, nevertheless initially they felt ill-prepared given insufficient knowledge or skills to manage palliative cases based upon their tertiary education and were poorly supported once in the field given a lack of clinical practice guidelines (CPGs). Participants also noted a lack of knowledge among medical, nursing and allied health clinicians about a SLP's contribution to PC, causing barriers for SLPs being professionally accepted within palliative environments.
Conclusion: Recommendations included the development of improved resources specifically about SLP practice in end-of-life care, the need for greater exposure at the tertiary level of SLP palliative care practices, and CPGs for SLPs working in adult palliative care.
OBJECTIVES: Despite growing interest in frailty as a significant public health challenge, comparatively little is known about how older adults perceive and experience frailty, limiting the effectiveness of strategies to improve frailty management and prevention. The objective of this study was to understand how older people, including frail older persons in residential aged care, perceive and understand frailty through an interpretive-descriptive qualitative study.
SETTING: Aged care facility, community-based university for older persons and an aged care auxiliary care group in a large metropolitan centre in South Australia.
PARTICIPANTS: 39 non-frail, prefrail, frail and very frail South Australian older adults.
METHODS: Seven focus groups were conducted. Participants completed one of two frailty instruments depending on setting and indicated whether they self-identified as frail. Data were analysed inductively and thematically by two independent investigators.
RESULTS: Frailty was described according to three schemas of (1) the old and frail: a static state near the end of life; (2) frailty at any age: a disability model; and (3) frailty as a loss of independence: control, actions and identity. In addition, a theme was identifying linking mindset, cognition and emotion to frailty. The term frailty was viewed negatively and was often implicated with personal choice. There was little correlation between frailty assessments and whether participants self-identified as frail.
CONCLUSIONS: Aside from a disability model, views of frailty as unmodifiable permeated older persons' diverse perspectives on frailty and are likely to impact health behaviours. To our knowledge, this is among the largest qualitative studies examining consumer perceptions of frailty and contributes a clinically relevant schema linking age, prevention and modifiability from a consumer perspective.
BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.
AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.
DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.
SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.
RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.
CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
TRIAL REGISTRATION NUMBER: ACTRN12615000120572, pre-results.
BACKGROUND: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages.
METHODS: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go".
RESULTS: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance").
CONCLUSIONS: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.
Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population.
Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents.
Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures.
Setting/participants: Parents currently caring for one or more children (<=18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia).
Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support.
Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
A challenge in end-of-life care is requests by patients or their substitute decision-makers for treatment that doctors consider is "futile" or "non-beneficial". Concerns that these concepts are uncertain and subjective have led to calls for medical policies to clarify terminology and to provide procedural solutions to prevent and address disputes. This article provides a comprehensive analysis of how Australian medical guidelines and policies on withholding or withdrawing potentially life-sustaining treatment address futility. It demonstrates that while the concept is found throughout medical policies and guidelines, the terminology employed is inconsistent. There is also variability in the extent of guidance given about unilateral decision-making and mechanisms for dispute resolution. This is problematic, given that the question of further treatment can often only be determined in relation to the individual patient's goals and values. We conclude by advocating for the development of a unified policy approach to futile or non-beneficial treatment in Australia.
AIMS AND OBJECTIVES: The proposed study aimed to answer the following question: What communication issues do nurses find challenging when caring for people with life-limiting illness?
BACKGROUND: Evidence suggests that attitudes, skills and knowledge about how nurses communicate effectively with patients and their families could be improved. However, the literature predominantly focuses on nurses working in oncology and the medical profession.
DESIGN: A qualitative descriptive design was used.
METHODS: Focus groups were conducted with 39 nurses from three wards within a regional healthcare organisation in Victoria, Australia. Data were analysed using thematic content analysis. The COREQ checklist was used to document reporting of the study.
RESULTS: In their view, nurses have the potential to develop a strong bond with patients and their families. Three key themes were identified: (a) feeling unskilled to have difficult conversations with patients who have life-limiting illness; (b) interacting with family members adds complexity to care of patients who have life-limiting illness; and (c) organisational factors impede nurses' capacity to have meaningful conversations with patients and their families.
CONCLUSIONS: Caring for individuals with life-limiting illness is complex and often occurs in an emotionally charged environment. However, nurses report being hampered by time restraints and lack of information about the patient's condition and goals of care. Limitations in conversation structure and a comprehensive range of core communication skills affect their ability to confidently engage in conversations, particularly when they are responding to prognostic questions.
RELEVANCE TO CLINICAL PRACTICE: Whilst nurses are responsible for performing technical skills, they can maximise care by developing a trusting relationship with patients and their relatives. Increased acuity limits the time nurses have to talk with patients. In addition, they lack confidence to deal with difficult questions. Specific training may increase nurses' confidence and efficiency when communicating with patients and their families.
The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.