Palliative Care In Australia Research Articles

Strengthening Muslim community leaders’ understanding of palliative care in Australia

Meeting the end-of-life care needs of particular groups in Australia remains challenging, especially those people who are culturally and/or religiously diverse. One such group is those adherents to Islam, whose communities come from many parts of the world. Objective: to develop connections with the Islamic community, to understand their end-of-life care needs. Method over 12 months palliative care staff and members of the Islamic community met to prepare for and deliver a seminar to assist understandings between the Islamic community and palliative care services. Results A seminar, attended by 79 participants, addressed issues like palliative care and Islam; how palliative care works; advance care planning; care coordination; and bereavement. Conclusion Many commonalities emerged, to provide a foundation for further activities; and the process demonstrated the importance of working together, and highlighted opportunities for shared collaborative work.

Perceptions of nurses towards oral health in palliative care: A qualitative study

ABSTRACT Background Oral health problems among people receiving palliative care are common and can significantly affect quality of life. Nurses are at the frontline of palliative care in Australia. However, how optimal oral health care is addressed in clinical practice by palliative nurses is not known. Aim To explore the perceptions of nurses working in Australian palliative care settings to determine the acceptability, challenges and recommendations that need to be considered to develop and implement an oral health care model in palliative care settings. Methods Two focus groups were conducted with community (n = 8) and inpatient nurses (n = 10) working in urban palliative care settings. Findings Four main themes were developed through consensus: 1) Oral health is important in the palliative care setting; 2) Additional training could enhance what nurses already do; 3) Barriers to receiving oral care: a structural issue; 4) Exploring alternative pathways to dental services. Discussion Nurses recognised the importance of oral health in palliative care; however, the paucity of set protocols based on existing guidelines meant that oral care was often unstructured. Systemic factors reduced the number of available options for people receiving palliative care to access professional dental treatment. Although alternative solutions, including teledentistry services, were explored, there were some constraints. Conclusion A palliative care oral health model of care would need to integrate existing formal guidelines into a comprehensive framework specific for palliative care nurses and develop palliative care oral health training for them taking into consideration existing barriers for people to receive professional dental treatment.

Speech-language pathologists and adult palliative care in Australia

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.

Prevalence and severity of sleep difficulty in patients with a CNS cancer receiving palliative care in Australia.

The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty. A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty. Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care. Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.

Future directions for community engagement as a public health approach to palliative care in Australia

The origins of contemporary public health approaches to palliative and end-of-life care can be traced to Victoria, Australia. The work of Allan Kellehear and the palliative care unit at La Trobe University proved seminal, and this continues to grow. But while the growth of compassionate communities continues internationally, both challenges and opportunities remain for communities in Australia. In this context, we discuss future directions for community engagement as a public health approach to palliative care.Drawing from examples of community activities and from the literature, we highlight the use of arts and social media as an emerging strength from which to build. Through the lens of positive education, we propose a positive paradigm for death education in schools to promote positive dying. The relevance and potential contribution of appreciative inquiry is then explored as an asset-based public health approach to support sustainable community development. Collective action towards these future directions will contribute to the continued flourishing of public health approaches to palliative care in Australia.

Developing Organizational Guidelines for the Prevention and Management of Suicide in Clients and Carers Receiving Palliative Care in Australia.

This article describes the process of developing a suicide guideline in palliative care. Little literature was available, but utilizing the partnership model, a working party consulted with each discipline regarding specific requirements. The working party experienced significant challenges in creating policy that would adequately cover the diverse needs of all members of the palliative care team, as it was recognized that all staff needed guidance. The final guideline incorporated specific action plans for each discipline; mandatory training for all staff was endorsed through a recognized suicide alertness training program; advanced training in suicide intervention skills for key clinical staff will be required; and a "Rapid Plan Team" was recommended. This policy development has required significant work and the combined expertise of many disciplines.

Depression means different things: A qualitative study of psychiatrists' conceptualization of depression in the palliative care setting.

Medical practitioners conceptualize depression in different ways, which adds to the challenges of its diagnosis and treatment, as well as research in the palliative care setting. Psychiatric assessment is often considered the "gold standard" for diagnosis, therefore how psychiatrists conceptualize depression in this setting is pertinent. Our study aimed to investigate this issue. Psychiatrists working in palliative care in Australia were individually interviewed using a semistructured approach. Nine participants were interviewed to reach data saturation. Interview transcripts were analyzed for themes. Three overarching themes were identified: (1) depression means different things; (2) depression is conceptualized using different models; and (3) depression is the same concept within and outside of the palliative care setting. Participants explicitly articulated the heterogeneous nature of depression and described a different breadths of concepts, ranging from a narrow construct of a depressive illness to a broader one that encompassed depressive symptoms and emotions. However, depressive illness was a consistent concept, and participants considered this in terms of phenotypic subtypes. Participants used three models (spectral, dichotomous, and mixed) to relate various depressive presentations. Psychiatrists did not subscribe to a unitary model of depression but understood it as a heterogeneous concept comprised of depressive illness and other less clearly defined depressive presentations. Given the influence of psychiatric opinion in the area of depression, these findings may serve as a platform for further discussions to refine the concepts of depression in the palliative care setting, which in turn may improve diagnostic and treatment outcomes.

Establishing a nurse practitioner collaborative: evolution, development, and outcomes.

The first Australian palliative care nurse practitioner (NP) was endorsed in 2003. In 2009 the Victoria Department of Health funded the development of the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC). Its aim was to promote the NP role, develop resources, and provide education and mentorship to NPs, nurse practitioner candidates (NPCs), and health service managers. Four key objectives were developed: identify the demographic profile of palliative care NPCs in Victoria; develop an education curriculum and practical resources to support the training and education of palliative care NPCs and NPs; provide mentorship to NPs, NPCs, and service managers; and ensure effective communication with all key stakeholders. An NPC survey was also conducted to explore NPC demographics, models of care, the hours of study required for the role, the mentoring process, and education needs. This paper reports on the establishment of the VPCNPC, the steps taken to achieve its objectives, and the results of the survey. The NP role in palliative care in Australia continues to evolve, and the VPCNPC provides a structure and resources to clearly articulate the benefits of the role to nursing and clinical services.

Neonatal palliative care in action: moving beyond the rhetoric and influencing policy

The purpose of this paper is to move beyond the rhetoric of espousing the importance and timeliness of palliative care for the neonatal population, and to explore how what is known can influence health and social policy. A recent Commonwealth of Australia Senate enquiry into palliative care raised concerns about the current lack of specialist perinatal and neonatal palliative care in Australia. Inherent to the difficulties of moving a neonatal palliative care model forwards are the identified barriers to palliative care practice in the clinical setting, which have been well defined. To inform policy, it is imperative that health professionals in the neonatal discipline are knowledgeable about legislative priorities and the public concerns regarding palliative care for neonates. This paper argues that there are several priorities for moving this model of care forwards, which include legislation that supports access to care such as development and funding support of perinatal hospices, continuity of care, caregiver support, research and in particular education for the health care professionals caring for dying babies and their families. To achieve this, we need to set national research priorities that reflect a truly collaborative partnership. It is time to move beyond the rhetoric.

Piloting the role of a pharmacist in a community palliative care multidisciplinary team: an Australian experience

BackgroundWhile the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs) by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service.MethodsThe study was undertaken (February March 2009-June 2010) in three phases. Development (Phase 1) involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3) of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs.ResultsThe pharmacist screened most patients (88.4%, 373/422) referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52), and a variety of DRPs (113) were detected at this point, the most common being "patient requests drug information" (25%, 28/113) and "condition not adequately treated" (22%, 25/113). The pharmacist made 120 recommendations in relation to her interventions.Fifty percent of online survey respondents (10/20) had interacted 10 or more times with the pharmacist for advice. All felt that the pharmacist's role was helpful, improving their knowledge of the different medications used in palliative care. The six team members who participated in the focus group indicated that there were several benefits of the pharmacist's contributions towards medication screening and review.ConclusionsThe inclusion of a pharmacist in a community palliative care team lead to an increase in the medication-related knowledge and skills of its members, improved patients' medication management, and minimised related errors. The model of care created can potentially be duplicated by other palliative care services, although its cost-effectiveness was unable to be accurately tested within the study.

Renal palliative care in Australia: Time to engage

Renal palliative care in Australia: Time to engage

Has undergraduate education prepared occupational therapy students for possible practice in palliative care?

It has been argued that the unique nature of the occupational therapy role in palliative care (PC) warrants dedicated attention in undergraduate programmes to improve the confidence of occupational therapy graduates to work in this setting. Nevertheless, little is known about either the present PC education or the preparedness of graduates to work in this field. In addressing each of these issues, this study also sought information to guide the development of occupational therapy-specific undergraduate teaching resources. Survey information was gathered from two participant groups: (i) six occupational therapy schools from Australia and New Zealand and (ii) 24 occupational therapists employed in PC in Australia and New Zealand. Two different surveys were used, targeting issues specific to each of these two groups. Where possible, data were analysed quantitatively, whereas open-ended questions were interpreted thematically. Occupational therapy schools reported 2-10 hours of PC-specific content and requested teaching resources specific to the occupational therapy role. Less than half of the clinicians (45.8%) recalled receiving undergraduate content in PC, and 75% reported having felt unprepared to work in this field. Clinicians who had received PC-specific content at university felt more prepared to work in this field than those who had not. Several recommendations for teaching PC were made. The link between the extent of PC education received and perceived readiness to work in this field, together with the relatively small amount of dedicated undergraduate PC-specific content, supports the need to optimise teaching in this unique field.

A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care

Clinical trials in palliative care (PC), especially randomised controlled trials (RCTs), are notoriously difficult to complete. One perceived challenge is gatekeeping, the reluctance of some healthcare professionals (HCPs) to refer patients for research studies. This study aimed to identify the extent of gatekeeping from palliative RCTs. An anonymous questionnaire was sent to 597 HCPs with an interest in PC in Australia and New Zealand to assess their willingness to refer patients for RCTs. Respondents considered key issues that might affect their decision, documented willingness to refer to RCTs of increasing complexity in a hypothetical pain situation and documented the degree of patient inconvenience considered acceptable. Demographic data were collected. One hundred ninety-eight questionnaires were returned (33%), 122 from doctors and 76 from other HCPs. Very few were willing to refer to complicated studies involving many extra tests and/or hospital visits. Non-medical HCPs were less interested than doctors in studies that involved randomisation, placebo controls or double-blind methodology. The majority would refer patients for non-pharmacological studies, but were less willing to refer for pharmacological studies with possible side effects. Non-medical HCPs were less willing than doctors to refer to trials that involved patient inconvenience. Two factors predicted for greater willingness to refer: previous research experience and male gender. The survey revealed an unwillingness on the part of many HCPs to refer patients for RCTs in PC. It identifies trial-related factors that may encourage or discourage referral. Gatekeeping has the potential block recruitment and introduce a selection bias.

Palliative Care Training: A Survey of Physicians in Australia and Europe

The purpose of this paper is to present data about the level and background characteristics of physicians' training in palliative care in Australia (AU), Belgium (BE), Denmark (DK), Italy (IT), The Netherlands (NL), Sweden (SE) and Switzerland (CH) (n = 16,486). The response rate to an anonymous questionnaire differed between countries (39%-68%). In most countries approximately half of all responding physicians had any formal training in palliative care (median: 3-10 days). Exceptions were NL (78%) and IT (35%). The most common type of training was a postgraduate course. Physicians in nursing home medicine (only in NL), geriatrics, oncology (not in NL), and general practice had the most training. In all seven countries, physicians with such training discussed options for palliative care and options to forgo life-sustaining treatment more often with their patients than did physicians without. Irrespective of earlier palliative care training, 87%-98% of the physicians wanted extended training.

Palliative care teams and management levers

This paper is the third in a series that will examine the management of innovation by multidisciplinary patient care teams in palliative care in Australia and reports on the existence and use of organisational levers to enable and influence required characteristic behaviours in the teams. These levers work in concert with organisational capabilities to resource the required behaviours. Interviews with management teams in three Australian palliative care case study organisations confirm the existence and use of organisational levers. It appears that levers are available organisationally and utilised where necessary but fall into three distinct groups, those utilised by any person or group needing them, those utilised more specifically by management teams and those utilised by multidisciplinary patient care teams. It is noted that these groups are dependent on the existence of the levers for the optimisation of their efforts.

Community Palliative Care in Australia

Globally, the provision of health care has made an increasing move towards community‐based care over the past decade. Early discharge programs, hospital‐in‐the‐home and community rehabilitation are concepts that have been espoused as solutions to the increasing demands on inpatient facilities. Although there can be no doubt that reduced length of hospital stays has benefits to the health‐care system, questions still remain as to whether the services provided in the community are adequate to meet the needs of the patients who are now encouraged to utilize the community health‐care services. This study examines the deficits between the need for services and the services provided from the perspective of community palliative care in Australia.

Communication issues for the interdisciplinary community palliative care team.

This paper discusses the findings of a critical study that examined the communication patterns between nurses and general practitioners (GPs) providing palliative care in Australia. Interviews and focus groups involved 40 palliative care nurses who worked in the three settings of care: community, hospice and hospital. Issues that impeded effective communication strategies between palliative care nurses and GPs were networking, case management, multiple service providers, lack of standardized documentation and formal tracking of clients, along with difficulties in transmission of relevant practice knowledge. Supporting strategies for effective formal modes of communicating and reporting are described.

The future of palliative care nursing research in Australia.

Nursing research in palliative care is becoming more important as cost effectiveness and evidence-based practice are becoming mandatory. Fifty-nine published and unpublished projects relating to nursing research on palliative care in Australia between 1990 and 1996 were reviewed. Findings indicated that nurses working in palliative care in Australia are interested in researching a range of topics using varied methods. The nurses' primary interests appear to be their own professional issues and management of the patient's pain. Little research on families/carers of palliative care patients was evident. There is a need for future research to focus on projects that justify the nurse's role in the palliative care team, show that nursing interventions for symptom control affect patient outcomes and prove nurses are integral to the psychosocial and spiritual wellbeing of the patient and family during the palliative care journey.

Development of a distance education palliative care programme for allied health professionals in Australia

A postal survey of allied health professionals working in hospice and palliative care in Australia was conducted in 1995. Its aims were to investigate the education presently provided for allied health professionals in this field and the interest of these workers in further education. A total of 223 questionnaires were returned. One hundred and sixty‐five respondents stated that no specific education for allied health professionals was provided in their workplace. Almost all considered that there was a need for more palliative care education for allied health professionals. Seventy‐five per cent said they were interested in distance education in palliative care. The implications of these findings for further training are discussed, as well as the development of a post‐graduate distance education package.

National survey of drug use in palliative care.

The objective was to compile data on therapeutic approaches employed in palliative care in Australia, including practices relating to combining drugs in syringe drivers for administration by subcutaneous infusion. A questionnaire, with a reply-paid envelope, was sent to 130 teaching hospitals and palliative care services throughout Australia. Ninety-six responses were received (74% response rate). Drugs commonly administered in palliative care included oral morphine (97% of respondents), subcutaneous morphine (76%), oral metoclopramide (82%), subcutaneous metoclopramide (41%), oral dexamethasone (70%), oral haloperidol (50%), subcutaneous haloperidol (43%), oral prochlorperazine (47%), oral codeine (38%) and subcutaneous midazolam (36%). Drugs frequently combined in syringe drivers for subcutaneous infusion included morphine plus metoclopramide (67%), morphine plus midazolam (66%), and all three of these drugs (35%). Only 48% of the palliative care services had a policy on combining drugs in syringe drivers for administration by subcutaneous infusion and 34% had an upper limit on the number of drugs combined in syringe drivers. Twenty-nine per cent of respondents had encountered problems (e.g. incompatibilities) when combining drugs in syringe drivers for administration by subcutaneous infusion. This study has revealed considerable variation in the practice of therapeutics and the combining of drugs in syringe drivers for administration by subcutaneous infusion in palliative care.