Establishment of the first Australian public and health-professional palliative care advice service: exploring caller needs and gaps in care.

This study explores and describes the state-wide needs of the first 1000 calls to the newly established Victorian Palliative Care Advice Service (PCAS). A retrospective analysis investigated calls from the Victorian general public (n = 618 calls) and healthcare professionals (n = 382 calls) to PCAS between 26 May 2020 and 24 October 2022. Caller demographics, disease type, reason for call, and perceived utility of service were described. Most calls were from members of the public (62%) and related to malignant conditions (41%). Regional/rural clients comprised 45% of all calls to the service, of which half (50%) were health professionals seeking advice on symptom management and medication. One-third (29.3%) of all calls from health professionals were escalated to a palliative care medical consultant. PCAS prevented calls to emergency services in 10% of cases, and 82% of callers reported their issue was 'very much' or 'completely' addressed by PCAS. PCAS was shown to be frequently used by the public and healthcare professionals supporting patients with advanced, life-limiting illnesses. The service provided a solution without requiring complex technology, delivering a rapid connection for consumers with specialist palliative care expertise that might otherwise be unavailable, particularly in regional areas.

Understanding Complexity in Care: Opportunities for Ethnographic Research in Palliative Care.

Background: Ethnography has been used to address a broad range of research questions in health care. With ethnographic research methods it is possible to gain access to the complex realities of health care practice as it occurs, through interpreting the nuances of individual and team behaviours, the roles and dynamics of care provision, and the social impacts and influences of illness. The provision of clinical palliative care is complex, involving multidisciplinary collaboration across different health systems, and is subject to a multitude of personal, cultural and environmental influences. This complexity demands creative methodological approaches to research in palliative care, of which ethnography plays an important, if infrequently utilised, role. Aim: This article aims to explore potential opportunities of ethnographic methods for palliative care research. Findings: Ethnographic methods focuses on behaviour in the 'natural' setting of participants, to create theoretical descriptions of events, cultures, interactions and experiences. In palliative care these methods may provide nuanced understandings of illness, relationships and teams, communication, medical education, complex care provision, and novel or changing health practices. Of particular importance is the potential of these methods to understand complex practices and processes, and engage with under-represented population groups who may be excluded from interview research. Conclusion: Ethnography offers important opportunities for future research in palliative care and should be considered as part of the 'research toolbox' to improve understanding of the complex nature of care provision and the experiences of illness and loss.

Desire to Die Statements in the Era of Voluntary Assisted Dying: An Audit of Patients Known to a Victorian Consultation-Liaison Palliative Care Service.

Objectives: In the new era of voluntary assisted dying (VAD) legislation in Australia, this study aimed to explore (1) underlying reasons for desire to die statements (DTDSs), (2) clinician responses to DTDSs and (3) whether DTDSs were a true request for VAD. Methods: Clinical audit using an existing prospectively collected quality assurance database, supplemented by electronic medical records. Patients known to a consultation-liaison palliative care service who expressed a DTDS between October 2019 and September 2020 were included. Results: Forty-one patients were included; 29 (71%) were male, 29 (71%) had a malignancy and 31 (76%) expressed a DTDS more than once. Uncontrolled psychological symptoms were present more often than physical (n = 30 vs 19 [73% vs 46%]), yet physical symptoms were addressed more frequently than psychological (80% vs 63% of the time). Based on available data, the VAD assessment process was commenced by 7 patients, and death by VAD occurred for 2 patients. Conclusions: In our study, DTDSs were complex, multi-layered requests that more commonly reflected psychological rather than physical suffering. Though VAD is now legally possible, a DTDS was not always synonymous with a request for VAD. Key to responding to these requests are high levels of clinician confidence and communication skills. Training in this area remains critical for the experience of both patients and clinicians.

The underrepresentation of palliative care in global guidelines for responding to infectious disease outbreaks: a systematic narrative review.

BACKGROUND: The importance of palliative care provision has been highlighted in previous humanitarian emergencies. This review aimed to examine the breadth and depth of palliative care inclusion within global guidelines for responding to infectious disease outbreaks. METHODS: The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Electronic searches of MEDLINE, Embase, Cumulative Index to Nursing and Allied Health, PsychInfo and grey literature were performed. Inclusion criteria were guidelines (recommendations for clinical practice or public health policy) for responding to infectious disease outbreaks in the general adult population. Results were limited to the English language, between 1 January 2010 and 17 August 2020. Analysis of the included articles involved assessing the breadth (number of palliative care domains covered) and depth (detail with which the domains were addressed) of palliative care inclusion. RESULTS: A total of 584 articles were retrieved and 43 met the inclusion criteria. Two additional articles were identified through handsearching. There was limited inclusion of palliative care in the guidelines examined. CONCLUSIONS: There is an opportunity for the development of guidelines that include information on palliative care implementation in the context of infectious disease outbreaks in order to reduce the suffering of key vulnerable populations worldwide.

Communal responsibility: a history of health collectives in Australia.

Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context.

'Pretty fit and healthy': The discussion of older people in cancer multidisciplinary meetings.

INTRODUCTION: Cancer multidisciplinary meetings (MDMs) are central to treatment decision making. The language used in MDMs may influence treatment decisions, yet has received little research attention. This study aimed to examine the terminology used to describe non-cancer items in the discussion of older people within cancer MDMs. METHODS: MDMs of four tumour streams were attended over twelve weeks. For each person aged 70 or older discussed, the following was hand recorded: age, gender, and phrases describing non-cancer items and patient views. A qualitative thematic analysis was employed to examine the text. RESULTS: Twenty cancer MDMs were attended, at which 71 people aged 70 or older were discussed. Age, comorbid medical conditions, and general descriptors emerged as the areas in which non-cancer information was presented. In contrast to the medical terminology used to describe comorbid medical conditions, non-specific general descriptors, such as 'fit', 'well', and 'good', were used to describe other aspects of older people. Adverbs, including 'very', 'pretty', and 'quite', often accompanied general descriptors. The, often subtle, intonation and context associated with these adverbs resulted in markedly different meanings. CONCLUSION: Non-objective, potentially ambiguous general descriptors were commonly used to encompass non-disease aspects of older people in cancer MDMs. These descriptors may have the potential to sway treatment recommendations. However, their frequent use suggests team members recognise that non-disease aspects of a person, aside from chronological age, are considerations in treatment recommendations. Therefore, strategies to increase discussion of non-cancer items in a more objective manner may be acceptable to MDM attendees.

The care of the very old in the last three days of life.

BACKGROUND: As life expectancy has increased, the age at which people are dying has also increased. There is limited knowledge of the experience of dying of the very old. We sought to examine the last 3 days of life for the very old, dying in a palliative care unit, focusing upon symptom burden and medications prescribed. METHODS: A retrospective review of medical records of consecutive patients who died in two inpatient palliative care units. Information collated included demographic and medical information, symptom data, and medications (opioids, benzodiazepines and antipsychotics) administered. Analysis comparing patients aged 80 years and older (cases) and those in the median age range of the treating palliative care units, that is, those aged 50 to 70 years (comparators) were conducted. RESULTS: One hundred five cases and 100 comparators were identified. Analysis revealed a significantly shorter length of stay in the cases (13 days) compared to comparators (19 days; p≤0.01).) In the last 3 days, cases received significantly less parenteral morphine equivalents (82.8 versus 170.5 mg, p<0.05), midazolam (12.1 versus 19.1 mg, p<0.05), and lorazepam equivalents (0.9 versus 2.4 mg, p<0.01). Overall, symptom profiles between the groups were similar. IMPLICATIONS: The very old appear to have a distinct experience of palliative inpatient care with shorter admissions, and lower requirements for medication. Reasons for lower medication requirements are discussed, and the need for future prospective studies in this area is highlighted. A better understanding of the needs of this population at end of life will enable adequate service planning and improved care.

Palliative care and the hemato-oncological patient: can we live together? A review of the literature.

Current evidence suggests that patients with hematological malignancies less frequently access palliative care services, and for those who do, this tends to occur later in their illness than their counterparts with solid malignancies. These patients are also more likely to die in hospital following escalating interventions. This approach to care that considers palliative care referral after most treatments are exhausted has implications for the quality of palliative care intervention possible. An episodic approach engaging palliative care according to needs rather than prognosis may be more valuable. The successful integration of palliative care into the care of hemato-oncological patients requires recognition by palliative care physicians of the particular issues encountered in care, namely, the difficulty in individual prognostication; ongoing therapeutic goals of curability or long term survival; the technical nature and complications of treatment; the speed of change to a terminal event; the need for pathology testing and transfusion of blood products as death approaches; the potentially reversible nature of intercurrent events such as infection; and the long relationships that develop between patients and their hematologists. Meanwhile, hematologists should be aware of the benefits of palliative care earlier in an illness trajectory and that palliative care does not equate to terminal care only. This review summarizes current practices and barriers to referral, and suggests recommendations for collaborative care and further research in the palliation of hemato-oncological patients. In doing so, it highlights to palliative care and hematology physicians how successful integration of their disciplines may improve their care of these patients.

The development and evaluation of an inpatient palliative care admission triage tool.

BACKGROUND: An increased demand for palliative care services has been demonstrated, in part due to an aging population and an enhanced role of palliative care in nonmalignant illness. In particular, there is a demand for inpatient palliative care unit beds, with several services now creating waiting lists for admission. The aim of this study was to explore the development, implementation, and outcomes following the introduction of an inpatient palliative care admission triage tool. METHODS: The study consisted of two phases: (1) a developmental phase, in which a purposive-sampled group participated in a series of semistructured discussions to determine the clinical and administrative criteria relevant for consideration of admission priority and (2) an implementation and evaluation phase. This second phase consisted of a 3-month trial of the tool at two inpatient palliative care units (involving three separate campuses), with subsequent evaluation of quantitative and qualitative data related to admission processes. RESULTS: Of the 234 patients, there was a suggestion that those with less urgent needs indicated by a low admission score spent more time on the waiting list. Subsequent qualitative analysis demonstrated acceptance of the tool by clinicians, who stated it supported the decision-making processes, and was a useful education aid. CONCLUSION: This study represents the first reported attempt to define the priorities for a waiting list for admission to palliative care units, and demonstrates its utility in providing a transparent process for palliative care units to manage the competing needs of patients referred for care.

The cautious use of cyclizine in a patient with myasthenia gravis.

This brief report describes the cautious but successful use of cyclizine, an anticholinergic agent, for the relief of intractable nausea in a patient with myasthenia gravis, followed by a review of the available literature.

End-of-life care in adults with cystic fibrosis.

BACKGROUND: Cystic fibrosis (CF) is a life-limiting congenital disease, with most patients dying at a young age of progressive lung disease. Lung transplantation offers hope for many but may not occur. There is little to guide the provision of palliative care to this young population who maintain hope in the possibility of lung transplantation. METHODS: To inform the development of an appropriate model of palliative care, a medical record review of CF patients dying within a 5-year period without lung transplantation was undertaken. The aspects of care that were preventative, therapeutic, or palliative were quantified. RESULTS: Of the 20 records studied, all died in hospital. Only 15% of patients had a do-not-resuscitate order agreed to more than 1 week prior to death, increasing to 90% at the time of death (median of 2 days before death). Opioids were prescribed for 1 patient (5%) at 1 week prior to death, increasing to 85% of patients in the last 24 hours of life (median of 36 hours before death). During the last 24 hours of life, intravenous antibiotics continued in 85%, and assisted ventilation in 90% of subjects. CONCLUSION: We conclude that the circumstances surrounding the death of patients with CF holds challenges for their effective palliative care. CF patients continue life prolonging and preventative treatments until the last hours of life. There is an urgent need to examine palliative care approaches that may usefully coexist with maintaining transplantation options in the end-of-life care of this population.

Ideals and compromises in palliative care.

This qualitative study explores the concept of ideal palliative care as it broadens its field of application from terminal care to include people earlier in the course of an illness. Focus groups were held with palliative care professionals from community, inpatient, and hospital consultancy services to examine this issue. Palliative care professionals have clear views of what constitutes ideal care that include: establishing a relationship, setting goals, communication, acceptance, advocacy, flexibility, symptom relief, and recognising the identity of each person. There was agreement upon the nature of obstacles that prevented ideal care being achieved including obstacles created by families, other health professionals, administrative structures, and conflicts between the aims of care for a particular patient. Finally each clinician has a well-developed set of personal views of the acceptable limits to practice, although these views vary widely. The clusters of ideas emerging in this study describe three objects of different ontologic status. The elements of ideal care are conceptual in nature, highlighting the aspirations for workers. The obstacles reflect the real world that palliative care professionals must negotiate each day, giving rise to a form of care that was good enough. The acceptable standards and their limits is the degree to which staff will or will not accept the compromises in care raised by the real world of practice, reflecting the ethical stance of the workers. The pursuit of ideal care may be motivated by a complex mix of aspirations, real-world practicalities and fulfilment for both patients and staff.