Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

BACKGROUND: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. AIM: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. SETTING/PARTICIPANTS: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. RESULTS: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. CONCLUSION: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

Assessing the quality of care for people dying of cancer in hospital: development of the QualDeath framework.

Objective High-quality end-of-life care involves addressing patients' physical, psychosocial, cultural and spiritual needs. Although the measurement of the quality of care associated with dying and death is an important component of health care, there is a lack of evidence-based, systematic processes to examine the quality of dying and death of patients in hospital settings. Our purpose was to develop a systematic appraisal framework (QualDeath) for reviewing the quality of dying and death for patients with advanced cancer. The objectives were to: (1) explore the evidence regarding existing tools and processes related to appraisal of end-of-life care; (2) examine existing practices related to appraisal of quality of dying and death in hospital settings; and (3) develop QualDeath with consideration of potential acceptability and feasibility factors. Methods A co-design multiple methods approach was used. For objective 1, a rapid literature review was undertaken; for objective 2 we carried out semi-structured interviews and focus groups with key stakeholders in four major teaching hospitals; and for objective 3 we interviewed key stakeholders and held workshops with the project team to reach consensus. Results We developed QualDeath, a framework to assist hospital administrators and clinicians to systematically and retrospectively review the quality of dying and death for patients expected to die from advanced cancer. It offers four levels of potential implementation for hospitals to select from and incorporates medical record review, multidisciplinary meetings, quality of end-of-life care surveys and bereavement interviews with family carers. Conclusions The QualDeath framework provides hospitals with recommendations to formalise processes to evaluate end-of-life care. Although QualDeath was underpinned by several research methods, further research is needed to rigorously explore its impact and test its feasibility.

'It breaks a narrative of paramedics, that we're lifesavers': A qualitative study of health professionals', bereaved family members' and carers' perceptions and experiences of palliative paramedicine.

BACKGROUND: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. AIM: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. DESIGN: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. SETTING/PARTICIPANTS: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. RESULTS: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). CONCLUSION: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care.

Bridging cultures in palliative care: A qualitative study of the care of Indigenous Australians with advanced illness.

BACKGROUND: Lack of access, late engagement and limited referral for palliative care remain critical issues in supporting Indigenous Australians with life limiting illness. AIM: To explore the experiences and perspectives of Indigenous and non-Indigenous health professionals regarding the provision of palliative care for Indigenous people with advanced disease. DESIGN: Qualitative study involving semi-structured focus groups/interviews with analysis following an inductive thematic approach. SETTING/PARTICIPANTS: A purposive sample (n = 54) of medical, nursing, allied health and Indigenous Hospital Liaison Officers engaged in caring for Indigenous patients at a metropolitan teaching hospital in Australia. RESULTS: Four overarching themes were identified regarding provision of palliative care for Indigenous patients. These were (1) the intersection of cultures - Indigenous peoples, health and palliative care, (2) bridging the cultural divide: the integral role of Indigenous Hospital Liaison Officers, (3) health professionals devolve their responsibility to provide culturally appropriate care and (4) building towards a more holistic, culturally aware provision of palliative care. CONCLUSIONS: For many Indigenous people, the health system may be experienced as inflexible, narrowly focused and even prejudiced and traumatising. For Indigenous patients at the end of life, these challenges are heightened. The Indigenous Hospital Liaison Officers, working at the intersections of these two cultures, are key to negotiating such challenges as they seek opportunities to facilitate communication and understanding between firmly held cultural needs.

Palliative paramedicine: Comparing clinical practice through guideline quality appraisal and qualitative content analysis.

BACKGROUND: Palliative care is an emerging scope of practice for paramedicine. The COVID-19 pandemic has highlighted the opportunity for emergency settings to deliver palliative and end-of-life care to patients wishing to avoid intensive life-sustaining treatment. However, a gap remains in understanding the scope and limitations of current ambulance services' approach to palliative and end-of-life care. AIM: To examine the quality and content of existing Australian palliative paramedicine guidelines with a sample of guidelines from comparable Anglo-American ambulance services. DESIGN: We appraised guideline quality using the AGREE II instrument and employed a collaborative qualitative approach to analyse the content of the guidelines. DATA SOURCES: Eight palliative care ambulance service clinical practice guidelines (five Australian; one New Zealand; one Canadian; one United Kingdom). RESULTS: None of the guidelines were recommended by both appraisers for use based on the outcomes of all AGREE II evaluations. Scaled individual domain percentage scores varied across the guidelines: scope and purpose (8%-92%), stakeholder involvement (14%-53%), rigour of development (0%-20%), clarity of presentation (39%-92%), applicability (2%-38%) and editorial independence (0%-38%). Six themes were developed from the content analysis: (1) audience and approach; (2) communication is key; (3) assessing and managing symptoms; (4) looking beyond pharmaceuticals; (5) seeking support; and (6) care after death. CONCLUSIONS: It is important that ambulance services' palliative and end-of-life care guidelines are evidence-based and fit for purpose. Future research should explore the experiences and perspectives of key palliative paramedicine stakeholders. Future guidelines should consider emerging evidence and be methodologically guided by AGREE II criteria.

Working with palliative care physicians to prepare for voluntary assisted dying legislation.

OBJECTIVE: The Victorian Voluntary Assisted Dying Act 2017 (the Act) exposed a spectrum of opinions regarding euthanasia and physician-assisted suicide amongst Victorian palliative care physicians leading to sometimes acrimonious debate. The profession was unable to articulate a unified role in respect of VAD. METHOD: A collaboration between psychiatry and palliative care led to a series of group discussions in order to prepare for the Act and to re-establish professional cohesion. RESULTS: Although the meetings revealed a plurality of views regarding VAD amongst palliative care physicians, the majority were firmly against the Act. Early meetings revealed strong feelings of shock and an inability to proceed. Previous debates resurfaced between those in support and those not in support of VAD. Over time, there was increased acceptance of the need to adapt to the presence of the Act in order to limit its impact on the robust relationship with the patient central to the practice of palliative care. CONCLUSIONS: The implementation of VAD legislation requires an active process to address the challenges it represents for palliative care physicians. Collaborative facilitated meetings can help re-establish group cohesion through affirming the core principles of palliative care which remain independent of VAD.

Palliative Care Clinical Trials: Building Capability and Capacity.

Clinical trials are a key component of expanding the evidence base in palliative care. A key strategic objective of the Victorian Comprehensive Cancer Centre (VCCC), a multisite cancer center alliance, was to increase palliative care clinical trial expertise. The palliative care services within the VCCC alliance presented substantial trial development opportunities with large number of patients and established relationships, but few trial-active centers. Objectives: To establish a multi-site "Building Capability in Palliative Care Clinical Trials" program as a service development, and to assess the strategies, activities, and the outcomes resulting from this program. Methods: A series of strategies and activities were developed linked to the key program objectives of increasing the number of clinical sites and skilled clinicians conducting clinical trials, increasing the number of trials available and patients participating, broadening research opportunities in palliative care, and establishing the program sustainability. Results: In the two years of implementation, the program resulted in the establishment and conduct of several Phase 4 postmarketing pharmacovigilance studies, nine Phase 2 and 3 trials across five palliative care services, and a Phase 1 clinical trial. During the program, 150 patients were recruited to clinical trials, and 258 prospective pharmacovigilance monitoring cases were recorded. Five investigator-initiated trials were developed by clinical trial fellows and achieved competitive (n = 3) or commercial (n = 2) funding. Clinicians reported that undertaking clinical trials had increased attention to the evidence base of care provision, and increased service research activity more broadly. Long-term sustainability remains a challenge, particularly in the context of the COVID-19 pandemic. Conclusions: Clinical trials in palliative care services are feasible, acceptable, and result in increased attention to the evidence base of care. The strategies detailing the framework, activities, and outcomes have been collated to facilitate implementation of clinical trials in other sites and with other trial-naive disciplinary groups.

Palliative care physicians' preparation and planning for the implementation of the Voluntary Assisted Dying Act in Victoria.

BACKGROUND: In November 2017, the Victorian Voluntary Assisted Dying (VAD) Act was passed enabling people with a progressive terminal illness to end their life voluntarily. Heated debate abounded including, to some extent within palliative care, which was also challenged with developing processes around the legislation enactment. AIM: In response, the lead author convened a series of meetings of palliative care physicians to: (i) share ideas about preparations being undertaken within services; and (ii) re-establish professional cohesion following the divide that the legislation had presented. METHODS: A series of three closed meetings were held between the legislation passage and its implementation, with all Victorian palliative care physicians invited to attend. Meetings were facilitated by an experienced psychiatrist from outside the field. RESULTS: These meetings proved very valuable as physicians collectively sought to define and respond to challenges, simultaneously reflecting on the personal and professional implications for individuals and the field. Key areas raised including gauging institutional 'readiness' for the legislation through staff surveys; the educational role of palliative care staff of the legislation implications; communication skills training; the role (if any) of palliative care in the processes of VAD; and the perceptions of palliative care itself in health services and the community. It was during the processes of discussing challenges and sharing solutions that the attendees appeared to reaffirm their professional interconnections. CONCLUSION: A description of the key elements of these discussions may be useful to others who may yet face similar circumstances with the introduction of VAD legislation.

Assessment of potential opioid toxicity and response to naloxone by rapid response teams at an urban Melbourne hospital.

Opioid prescriptions have significantly increased in recent years and are used for a wide variety of indications. Electronic medical records of 45 patients who received naloxone by a rapid response team over an 18-month period were retrospectively reviewed. This study found inconsistencies in the management of possible opioid toxicity with variation in the total naloxone dose and number of doses administered. This highlights the importance of a standardised protocol for recognition and management of opioid overdose.

The experiences of patients with advanced cancer and caregivers presenting to Emergency Departments: A qualitative study.

BACKGROUND: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations. AIM: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers. DESIGN: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame. SETTING/PARTICIPANTS: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed. RESULTS: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options. CONCLUSION: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.

Survivorship of severe medically unexplained symptoms in palliative care.

OBJECTIVES: Patients who articulate their psychological distress primarily through physical symptoms (referred to as medically unexplained symptoms (MUS)) pose a challenge to the skills of most clinicians, including palliative care physicians. The philosophical underpinnings of palliative care with a stated focus on symptom management and care of the person in their psychosociospiritual context lend itself to the care of these patients. The aim of this study was to investigate the characteristics to improve identification of this patient group within palliative care. METHODS: Here, we report a case series of 6 patients with severe MUS who were referred to palliative care. We use illustrative case vignettes, examine clinical and demographic characteristics and review the perspectives of the multidisciplinary team to identify the common threads. RESULTS: This case series highlights the complexities and challenges that are inherent in providing assessment and care for patients with MUS that present to palliative care. Characteristics that were identified included the clustering of 'trigger' symptoms, backgrounds of multiple chronic illnesses and relationship dysfunction. Patient outcomes in this group were universally poor, including the death of 2 patients. CONCLUSIONS: Knowledge of this patient group is vital given the likely increase in prevalence of MUS as palliative care broadens its focus earlier in the trajectory of illness. The strengths of palliative care, including psychosociospiritual assessment, multidisciplinary input and communication skills holds the potential to accurately identify patients with MUS and allow the opportunity for specialist psychiatric input with the hope of improving outcomes for patients and their families.

Presentation patterns and outcomes of patients with cancer accessing care in emergency departments in Victoria, Australia.

PURPOSE: People with cancer attend emergency departments (EDs) for many reasons. Improved understanding of the specific needs of these patients may assist in optimizing health service delivery. ED presentation and hospital utilization characteristics were explored for people with cancer and compared with those patients without cancer. METHODS: This descriptive, retrospective, multicentre cohort study used hospital administrative data. Descriptive and inferential statistics were used to summarise and compare ED presentation characteristics amongst cancer and non-cancer groups. Predictive analyses were used to identify ED presentation features predictive of hospital admission for cancer patients. Outcomes of interest were level of acuity, ED and inpatient length of stay, re-presentation rates and admission rates amongst cancer patients and non-cancer patients. RESULTS: ED (529,377) presentations occurred over the 36 months, of which 2.4% (n = 12,489) were cancer-related. Compared with all other attendances, cancer-related attendances had a higher level of acuity, requiring longer management time and length of stay in ED. Re-presentation rates for people with cancer were nearly double those of others (64 vs 33%, p < 0.001), with twice the rate of hospital admission (90 vs 46%, p < 0.001), longer inpatient length of stay (5.6 vs 2.8 days, p < 0.001) and had higher inpatient mortality (7.9 vs 1.0%, p < 0.001). Acuity and arriving by ambulance were significant predictors of hospital admission, with cancer-related attendances having ten times the odds of admission compared to other attendances (OR = 10.4, 95% CI 9.8-11.1). CONCLUSIONS: ED presentations by people with cancer represent a more urgent, complex caseload frequently requiring hospital admission when compared to other presentations, suggesting that for optimal cancer care, close collaboration and integration of oncology, palliative care and emergency medicine providers are needed to improve pathways of care.

Managing the advanced cancer patient in the Australian emergency department environment: findings from a national survey of emergency department clinicians.

BACKGROUND: Delivery of care to people with advanced cancer in the emergency department (ED) is complicated by competing service demands, workloads and physical design constraints. We explored emergency clinicians' attitudes to the ED environment when caring for patients who present with advanced cancer, and how these attitudes are affected by access to palliative care services, palliative care education, staff type, ED experience and patient demographic, hospital type and region. METHODS: We electronically surveyed clinicians from the College of Emergency Nursing Australasia, Australian College of Emergency Nursing and Australasian College for Emergency Medicine working in an Australian ED. RESULTS: Respondents were 444 doctors and 237 nurses. They reported overcrowding, noise, lack of time and privacy as barriers to care. Most (93.3%) agreed/strongly agreed that the dying patient should be allocated private space in ED. 73.6% (451) felt unable to provide a desired level of care to advanced cancer patients in ED. Clinician attitudes were affected by staff type, experience, ED demographic and hospital type, but not education in palliative care. CONCLUSIONS: ED environments place pressure on clinicians delivering care to people with advanced cancer. Integrating palliative care services in ED and redesigning EDs to better match its multifaceted functions should be considered.

Physician-assisted suicide and/or euthanasia: Pragmatic implications for palliative care [corrected].

OBJECTIVE: Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues--and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community. METHOD: We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized. RESULTS: We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered. SIGNIFICANCE OF RESULTS: Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.

What's in a name? A qualitative exploration of what is understood by "palliative care" in the emergency department.

BACKGROUND: The understanding of what palliative care is, and which patients may benefit from palliative care, has important implications for optimal patient care in all areas of health provision. AIM: To explore the understanding of palliative care by healthcare professionals caring for patients with advanced cancer attending emergency departments. DESIGN: Qualitative study, with two phases: the first, a series of focus groups with healthcare professionals from various disciplines and settings caring for patients with advanced cancer presenting to emergency departments; the second, semi-structured telephone interviews with emergency healthcare professionals across Australian States and Territories, including outside metropolitan centers. The data were audio-recorded and transcribed, with analysis undertaken using a qualitative thematic analysis. SETTING/PARTICIPANTS: Saturation of themes was reached after 8 focus groups (22 emergency nurses, 21 emergency physicians, 6 oncologists, 6 hospital palliative care clinicians, and 28 community palliative care clinicians) and 11 telephone interviews (8 emergency physicians and 3 emergency nurses), a total of 94 participants. RESULTS: The overarching theme was that healthcare professionals held contradictory understandings of palliative care and its application in the emergency department; subthemes highlighted these inconsistencies when the term "palliative" is used, in understandings of and engagement with palliative care services and in perceptions about the practical utility of palliative care. CONCLUSION: There are entrenched contradictions and tensions surrounding the term "palliative care"; confronting these is likely to require more than re-branding, and will promote better care for this vulnerable patient group in the emergency department.

"Better pathways of care": suggested improvements to the emergency department management of people with advanced cancer.

OBJECTIVE: It is difficult to provide optimal care to people with advanced cancer presenting to emergency departments (EDs). Recent data suggest that the ED environment, the skills and priorities of treating staff, and the lack of clear communication related to goals of care contribute to the difficulty. By exploring the views of emergency, palliative care (PC), and oncology clinicians on the care of these patients, this study aimed to describe potential solutions. METHODS: This qualitative study involved focus groups with clinicians at two major hospitals and two community PC services in Melbourne, Australia, and semistructured telephone interviews with emergency clinicians from all other Australian states and territories. Discussions were recorded and transcribed verbatim. Thematic analysis identified ways to improve or enhance care. RESULTS: Throughout discussions with 94 clinicians, a number of possible improvements to care were raised; these were broadly grouped into service areas: clinical care, pathways, information access, and education. CONCLUSION: The provision of care to patients with advanced cancer in the ED occurs across sites, across disciplines, and across teams. To make improvements to care, we must address these complexities. The improvements suggested in this study place the patient (and the patient's family) at the centre of care.

Investigating trends in discharge destinations and impact on allied health service utilization in an Australian hospice.

Australia's population is aging and increasing. The palliative care needs of the population are also increasing in parallel, with more patients being referred to services for a broad range of reasons including symptom management, psychosocial support, and end-of-life care. Our study looks at how this manifests at on inpatient hospice in Melbourne, Australia, in terms of discharge destinations and allied health service utilization. We noted a trend in more discharges to residential care facilities, which appeared more likely for those patients who were admitted for assessment or had longer length of stay. Patients who were admitted for assessment also appeared in overall to utilize allied health services more than those admitted for end-of-life care. This information will help tailor resource allocation according to the current trends.

Caught in the middle: tensions around the emergency department care of people with advanced cancer.

BACKGROUND: People with advanced cancer frequently present to hospital EDs. International studies report conflicting attitudes towards providing such care and difficulties with communication. The experience of Australian clinicians, however, is not described. OBJECTIVE: The present study aims to identify issues important to emergency, palliative care (PC) and oncology clinical staff in managing people with advanced cancer presenting to EDs. METHODS: We qualitatively explored views of Australian clinicians working in emergency medicine, PC and oncology, via focus groups at two major hospitals and two community PC services in Melbourne, Victoria, and emergency clinicians from all other Australian states and territories via semi-structured telephone interviews. Purposive sampling for both groups ensured representation of experience, discipline and region of work. The focus groups and interviews were audio-recorded, transcribed and a thematic analysis identified issues important to participants. RESULTS: The overarching theme was EDs being 'caught in the middle' when providing care to patients with advanced cancer in the physical environment (privacy, noise, lack of information and delay and lack of defined pathways), the available resources (access block and overcrowding, time pressures, competition with other emergencies, lack of alternatives) and the roles and expectations of the staff providing care (seniority and comfort with dying, views of dying in the ED, expertise and comfort in caring for those with advanced illness). CONCLUSION: Despite limitations in the ED environment and resources, clinicians in oncology, PC and emergency medicine support the important role the ED plays in providing the necessary access and expertise for people with advanced cancer.