Palliative Care Services In Australia Research Articles

Evaluation of a nurse practitioner role within a specialist palliative care service in Australia

In Australia, despite the growing need for palliative care, there is a shortage of palliative care professionals. The literature suggests that nurse practitioners (NPs) are well positioned to innovate the current model of palliative medicine. This prospective study evaluates the implementation of a new NP role within an established multidisciplinary palliative care service. In this study, patients under the care of the NP had fewer admissions to an acute hospital compared to the rest of the service (17.0% vs. 27.2%), as well as no acute admissions for terminal care and a greater number of patients who achieved their preferred place of death (87.2% vs. 72.2%). A survey of the multidisciplinary team revealed that the majority of responders (93.3%) felt that the NP role had a positive impact on patient care and was holistic, safe, and met patients’ needs. Neutral or negative survey responses highlighted the need for further education or refinement of the role in areas such as prescribing and ability to refer patients directly to medical specialists. Overall, study results were positive and support the introduction of the NP role into a specialist palliative care service but more research is required to assess the effectiveness of the role.

Study protocol for SKIPMDD: subcutaneous ketamine infusion in palliative care patients with advanced life limiting illnesses for major depressive disorder (phase II pilot feasibility study)

IntroductionMajor depressive disorder (MDD) in people with advanced life-limiting illnesses can have significant impact on the quality-of-life of those affected. The management of MDD in the palliative care setting can...

Preferred Place of Death-A Study of 2 Specialist Community Palliative Care Services in Australia.

Choice and preference are fundamental to person-centered care and supporting personal choice at the end of life should be a priority. This study analyzed the relationship between a person's preferred place of death and other individual variables that might influence their actual place of death by examining the activity of 2 specialist community palliative care services in Australia. This was a cross-sectional study of 2353 people who died between 01 August 2016-31 August 2018; 81% died in their preferred place. Sex, type of life-limiting illness, and length of time in care were the only variables significantly related to dying in one's preferred place. Women were more likely to die in their preferred place than men (84% v 78%) and people with a non-cancer diagnosis were 7% more likely to die in their preferred place than those with cancer, particularly when that place was their private residence (74% v 60%) or Residential Aged Care Facility (98% v 89%). Someone in care for 0-7 days had 4.2 times greater odds of dying in their preferred place (OR = 4.18, 2.20-7.94), and after 21 days in care, people had 4.6 greater odds of having a preference to die in a hospital (OR = 4.63, 3.58-5.99). Both community palliative care services have capacity and a model of care that is responsive to choice. These findings align with known referral patterns and disease trajectories and demonstrate that it is possible to support the majority of people in the care of community palliative care services to die in their preferred place.

Mapping non-malignant respiratory palliative care services in Australia and New Zealand.

Objective Despite needs, people with advanced non-malignant respiratory disease are infrequently referred to palliative care services. Integrated models of palliative care and respiratory service delivery have been advocated to address this inequity of access. This study mapped current ambulatory palliative care service provision for patients with advanced non-malignant respiratory disease in Australia and New Zealand. Methods An online survey was distributed to the palliative care physician membership of the Australian and New Zealand Society of Palliative Medicine. Information was sought regarding access to specific breathlessness and integrated respiratory and palliative care services, and their operation. Data were described using descriptive statistics. Results In all, 133 respondents (93 from Australia, 40 from New Zealand; representing 55 Australian and 26 New Zealand discrete sites) with complete data were available for analysis. More than half the respondents reported seeing patients with advanced non-malignant respiratory disease frequently (56/97; 58%), and 18 of 81 services (22%) reported having breathlessness or integrated respiratory and palliative care services caring for this patient group. Such services were mostly staffed by respiratory and palliative care doctors and nurses and based in the clinic environment, with limited support available outside this setting. Of the 63 respondents without existing breathlessness or integrated services, 49 (78%) expressed interest in their establishment, with limited resources cited as the most common barrier. Conclusions There is limited availability of integrated respiratory and palliative care or specialised breathlessness services in Australia and New Zealand despite widespread support by palliative care physicians. This study provides a snapshot to inform strategic service development. What is known about the topic? People with advanced respiratory disease have very significant morbidity with complex needs equivalent to, and in many cases more intense than, people with end-stage lung cancer; they also have significant mortality. Yet, these people frequently do not access palliative care services. The establishment of integrated respiratory and palliative care services has been advocated as an effective means to overcome the barriers to palliative care access. Such services have demonstrated improved patient and family-reported outcomes, as well as service-level improvements. What does this paper add? This paper maps the availability of integrated respiratory palliative care services in Australia and New Zealand. We reveal that although most palliative care physicians report seeing patients with advanced respiratory disease in practice, just one-fifth of services report having an integrated service approach. There was high interest and enthusiasm for such services (78%), but resources limited their establishment. What are the implications for practitioners? Palliative care services recognise the needs of patients with advanced respiratory disease and the benefits of integrated respiratory and palliative care services to address these needs, but scarcity of resources limits the ability to respond accordingly. This study provides a snapshot of current service level to inform strategic development.

Economic and clinical outcomes of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service.

Objective The aim of this study was to assess the clinical, economic and personal impacts of the nurse practitioner-led Sydney Adventist Hospital Community Palliative Care Service (SanCPCS) Methods Parallel economic analysis of usual care was conducted prospectively with patients from the enhanced SanCPCS. A convenient retrospective sample from the initial service was used to determine the impact of the enhanced service on patient care. A time series survey was used with patients and carers from within the expanded service group in order to measure patient outcomes and values as they approached death. Results Patients of the SanCPCS were less likely to die in hospital and had fewer hospital admissions. In addition, the service halved the estimated hospitalisation cost per patient, but the length of hospital stay was not affected by the service. The SanCPCS was more beneficial for women in terms of fewer hospital admissions and lower costs. Patients' choices regarding place of care and death and what was 'important' to them changed over time. For instance, patients tended to prefer being at home as they approached death, and being pain free doubled in importance. Conclusions Nurse practitioner-led community palliative care services have the potential to result in significant economic and personal benefits for patients and their families in need of such care. What is known about the topic? National trends show an emphasis on community services with the aim of promoting and supporting the choice of dying at home, and this coincides with drives to reduce hospital costs and length of stay. Community-based palliative care services may offer substantial economic and clinical benefits. What does this paper add? The SanCPCS was the first nurse practitioner-led community-based palliative care service in Australia. The expansion of this service led to significantly fewer admissions and deaths in hospital, and halved the estimated hospitalisation cost per patient. What are implications for practitioners? Nurse practitioner-led models for care in the out-patient or community setting are a logical direction for palliative services through the engagement of specialised providers uniquely trained to support, nurture, guide and educate patients and their carers.

Regular, sustained-release morphine for chronic breathlessness: a multicentre, double-blind, randomised, placebo-controlled trial

IntroductionMorphine may decrease the intensity of chronic breathlessness but data from a large randomised controlled trial (RCT) are lacking. This first, large, parallel-group trial aimed to test the efficacy and...

A nurse practitioner-led community palliative care service in Australia.

Patients want community-based palliative care, but there was no continuity of care for patients at the Sydney Adventist Hospital to receive palliative and end-of-life care within a community setting. A nurse practitioner (NP)-led community palliative care service was developed. To present the background, design, function, and essential elements of the Sydney Adventist Hospital Community Palliative Care Service (SanCPCS). Semi-structured and cyclical discussions with key informants alongside internal document reviews. This is the first description of an NP-led community palliative care service model. The NP role ensured specialist training and extended clinical practice within the community setting. The SanCPCS delivers accessible, continuous, community-based palliative care throughout the patient's palliative and end-of-life journey. NP-led models for palliative and end-of-life care in the outpatient or community setting are a logical direction to meet patient need.

‘Death is difficult in any language’: A qualitative study of palliative care professionals’ experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds

Background: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. Aim: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture. Design: An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research. Setting/participants: Four focus groups held with palliative care staff (n = 28) in a single specialist palliative care service in Australia. Results: The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences. Conclusion: Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.

The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers.

This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

Unmet Needs of the Indian Family Members of Terminally Ill Patients Receiving Palliative Care Services

Indian family caregivers experience significant stress when caring for relatives with a life-limiting illness. The introduction of home palliative care services in Australia has increased the burden on families, and caregivers are at risk of physical, psychological, and social problems. The aim of t

Knowledge of Palliative Care: An Indian's Perspective

Background: Globally, the demand for palliative care services is markedly increased for the past decade due to emerging chronic diseases and ageing population. As a result, the health system needs to recognise and meet the needs of the people with life limiting illness. Palliative care is a specialised discipline of health care with the aim of providing care for the patient with terminal illness. Furthermore, there is evidence that minority ethnic groups have lack of knowledge on palliative care services in Australia. Purpose: To explore the issues in accessing palliative care services in Australia and provide recommendations to improve access. Methods & design: The research design chosen was constructivist grounded theory approach. Ethics approval was obtained from the study setting and from the university. Data collection was carried out in two phases. Semi-structured interview guide was used to collect the data. An in-depth interview was conducted and each interview lasts for 45 min to one and half hours. Snow ball sampling technique was done to recruit the participants. The inclusion criteria were: first generation Indian migrants; who understands, read and write English; Indian people receiving or already received palliative care services. Data was analysed by using grounded theory analytic technique. Findings: After analysing the data, two major themes were identified: knowledge about health care services, and knowledge on palliative care services. Conclusion: Although palliative care services are delivered effectively across Australia, still there are issues in accessing palliative care services among minority ethnic groups. Therefore, identifying these gaps and fulfilling these needs are the major focus in the Australia health care system.

Development of a State-Wide Pediatric Palliative Care Service in Australia: Referral and Outcomes over Two Years

Pediatric palliative care is an evolving specialty that aims to improve the lives of children with a life-limiting condition. As an emerging specialty, there is much to be learned about service provision and the expected outcomes that can be achieved. Additionally, quantification of the needs for pediatric palliative care is complicated by the uncertainty of defining the population that requires care. Our aim was to define the characteristics of the population cared for by a newly formed state-wide service in Queensland, Australia, and describe the development of the service over a 24-month period. Data on all referrals and outcomes were collected. Descriptive statistics were used to describe patterns including the variation in outcomes between children with oncology and non-oncology diagnoses. Other factors influencing the development of the service including involved health professionals and the model of the Australian health care system are also described. Over a 24-month period, 150 patients were referred of whom 117 subsequently died. There was a wide range of diseases and ages, and significantly, 58% of children were from regional or rural locations where there are can be limited access to specialist pediatric services. The average length of service was 83 days. A variety of factors were identified as being important for providing optimal care including ensuring equity in access, timing of referral, and continuity of care. The importance of a population-based approach to pediatric palliative care in a state that is geographically large and diverse like Queensland is highlighted. This article may provide valuable information to other health care providers who care for children with life-limiting illnesses.

Health care professionals' perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory

Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care. Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory. Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs. Significance of the results: Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

Using aggregated single patient (N-of-1) trials to determine the effectiveness of psychostimulants to reduce fatigue in advanced cancer patients: a rationale and protocol

BackgroundIt is estimated that 29% of deaths in Australia are caused by malignant disease each year and can be expected to increase with population ageing. In advanced cancer, the prevalence of fatigue is high at 70–90%, and can be related to the disease and/or the treatment. The negative impact of fatigue on function (physical, mental, social and spiritual) and quality of life is substantial for many palliative patients as well as their families/carers.Method/designThis paper describes the design of single patient trials (n-of-1 s or SPTs) of a psychostimulant, methylphenidate hydrochloride (MPH) (5 mg bd), compared to placebo as a treatment for fatigue, with a population estimate of the benefit by the aggregation of multiple SPTs. Forty patients who have advanced cancer will be enrolled through specialist palliative care services in Australia. Patients will complete up to 3 cycles of treatment. Each cycle is 6 days long and has 3 days treatment and 3 days placebo. The order of treatment and placebo is randomly allocated for each cycle. The primary outcome is a reduction in fatigue severity as measured by the Functional Assessment of Cancer Therapy-fatigue subscale (FACIT-F). Secondary outcomes include adverse events, quality of life, additional fatigue assessments, depression and Australian Karnovsky Performance Scale.DiscussionThis study will provide high-level evidence using a novel methodological approach about the effectiveness of psychostimulants for cancer-related fatigue. If effective, the findings will guide clinical practice in reducing this prevalent condition to improve function and quality of life.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12609000794202

Using Palliative Care Assessment Tools to Influence and Enhance Clinical Practice

The Palliative Care Outcomes Collaboration focuses on supporting palliative care services in Australia to measure service- and patient-level outcomes, and to use these data to drive continuous quality improvement. The introduction of a suite of clinical assessment tools nationally has resulted in important enhancements to care provision at individual service level. Improved communication, enhanced assessment of patient needs, and improved identification of triggers for the need to change care plans or for referral have resulted from this change.

Current Funding and Financing Issues in the Australian Hospice and Palliative Care Sector

This article overviews current funding and financing issues in the Australian hospice and palliative care sector. Within Australia, the major responsibilities for managing the health care system are shared between two levels of government. Funding arrangements vary according to the type of care. The delivery of palliative care services is a State/Territory responsibility. Recently, almost all States/Territories have developed overarching frameworks to guide the development of palliative care policies, including funding and service delivery structures. Palliative care services in Australia comprise a mix of specialist providers, generalist providers, and support services in the public, nongovernment, and private sectors. The National Palliative Care Strategy is a joint strategy of the Commonwealth and States that commenced in 2002 and includes a number of major issues. Following a national study in 1996, the Australian National Subacute and Nonacute Patient (AN-SNAP) system was endorsed as the national casemix classification for subacute and nonacute care. Funding for palliative care services varies depending on the type of service and the setting in which it is provided. There is no national model for funding inpatient or community services, which is a State/Territory responsibility. A summary of funding arrangements is provided in this article. Palliative care continues to evolve at a rapid rate in Australia. Increasingly flexible evidence-based models of care delivery are emerging. This article argues that it will be critical for equally flexible funding and financing models to be developed. Furthermore, it is critical that palliative care patients can be identified, classified, and costed. Casemix classifications such as AN-SNAP represent an important starting point but further work is required.

A means to an end: a web-based client management system in palliative care

Home-based palliative care (hospice) services require comprehensive and fully integrated information systems to develop and manage the various aspects of their business, incorporating client data and management information. These systems assist in maintaining the quality of client care as well as improved management efficiencies. This article reports on a large not-for-profit home-based palliative care service in Australia, which embarked on a project to develop an electronic data management system specifically designed to meet the needs of the palliative care sector. This web-based client information management system represents a joint venture between the organization and a commercial company and has been a very successful project.

Palliative Care Work, Between Death and Discharge

This paper discusses a small study that was undertaken in a palliative care unit (PCU) to demonstrate reasons for the lengthy patient turnover time after the death of a patient. The study arose from a managerial challenge about the PCU's efficiency in comparison to other settings of care. While palliative care services in Australia are loosely funded on a per diem rate, casemix funding models for inpatient services in other settings reward efficiency in terms of length of stay (1). The aim of the study was to undertake a post-death survey, from the nursing perspective, of activities and the time required to deliver follow-up care, as required, to the deceased patient and his/her family. Details of the post-death episode for all patients who died in the PCU over two time periods were collected using a newly designed tool. This paper does not argue for the incorporation of post-death nursing work as a measure of efficiency or quality; rather, it is a demonstration of the type of work and the time involved in carrying out post-death work. This nursing work is an essential but hidden and generally unacknowledged element of palliative care and, not surprisingly, there is a dearth of literature describing the role of the nurse in providing care of the family and others after the patient has died. This project has provided important information about the factors that protract after-death care, and gives some insight into the role of the nurse after a death occurs in a PCU.

An Australian casemix classification for palliative care: technical development and results.

To develop a palliative care casemix classification for use in all settings including hospital, hospice and home-based care. 3866 palliative care patients who, in a three-month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. Each day of care was costed using actual cost data from each study site. Regression tree analysis was used to group episodes of care with similar costs and clinical characteristics. In the resulting classification, the Australian National Sub-acute and Non-acute Patient (AN-SNAP) Classification Version 1, the branch for classifying inpatient palliative care episodes (including hospice care) has 11 classes and explains 20.98% of the variance in inpatient palliative care phase costs using trimmed data. There are 22 classes in the ambulatory palliative care branch that explains 17.14% variation in ambulatory phase cost using trimmed data. The term 'subacute' is used in Australia to describe health care in which the goal--a change in functional status or improvement in quality of life--is a better predictor of the need for, and the cost of, care than the patient's underlying diagnosis. The results suggest that phase of care (stage of illness) is the best predictor of the cost of Australian palliative care. Other predictors of cost are functional status and age. In the ambulatory setting, symptom severity and the model of palliative care are also predictive of cost. These variables are used in the AN-SNAP Version 1 classification to create 33 palliative care classes. The classification has clinical meaning but the overall statistical performance is only moderate. The structure of the classification allows for it to be improved over time as models of palliative care service delivery develop.

An Australian casemix classification for palliative care: lessons and policy implications of a national study.

To provide a nontechnical discussion of the development of a palliative care casemix classification and some policy implications of its implementation. 3866 palliative care patients who, in a three month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. A statistical summary of the clinical variables was compiled as the first stage of the analysis. Palliative care phase was found to be a good predictor of resource use, with patients fairly evenly distributed across the five categories. Clients treated in an inpatient setting had poorer function and higher symptom severity scores than those treated in an ambulatory setting, a result that is not surprising in this Australian setting. Implementation of the resultant AN-SNAP classification has been proceeding since 1998 in some Australian jurisdictions. The development and implementation of a classification such as AN-SNAP provides the possibility of having a consistent approach to collecting palliative care data in Australia as well as a growing body of experience on how to progressively improve the classification over time.