Frameworks for approaching prescribing at the end of life.
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Biomedical subjects
Publications and source records attributed to David C Currow.
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Complex societal factors unrelated to evidence of efficacy influence the increasing use of complementary and alternative therapies, which can be viewed as one form of health consumerism. The "therapeutic footprint" is a conceptual model that "plots" medical therapies and complementary and alternative therapies in relationship to one another and to their levels of risk and supporting evidence, acknowledging that medical therapies also entail risks. Philosophies about management of risk and adverse effects differ between complementary and alternative therapies and standard medical care, due to fundamental differences between professionalism within medicine and the demands of health consumerism. In standard medical care, patients' risks are mediated prior to treatment via the doctor-patient relationship and informed consent. With complementary and alternative therapies, protection mechanisms for consumers come into effect mainly after a problem has occurred. Understanding this difference helps doctors whose patients are using complementary or alternative therapies to define the boundaries between these therapies and professional medicine and provide appropriate disclosure of risks. Discussing complementary and alternative therapies and how they differ from standard medical care can provide opportunities to explore patients' concerns and improve the therapeutic relationship.
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End-of-life care must be informed by methodologically rigorous, high-quality research, but well-documented barriers make the conduct of palliative care clinical trials difficult. With careful consideration to study design and procedures, these barriers are surmountable. This paper discusses the approach used in a large scale, randomised, controlled trial of service-based interventions in a regional palliative care service in South Australia, and the impact of this trial on palliative care research more broadly, the changes to the service in which it was conducted, and on health policy beyond palliative care. The Palliative Care Trial evaluated three interventions in a 2 x 2 x 2 factorial cluster randomised design: case conferences, general practitioner education, and patient education. Main outcomes were performance status, pain intensity, and resource utilisation. A total of 461 patients were enrolled in the study. Pre-study planning and piloting is crucial, and accurately estimated withdrawal and death rates in the study. Other study design elements that facilitated this research included assessment of three interventions at one time, a dedicated recruitment role, a single clinical triage point, embedding data collection into routine clinical assessments, and meaningful outcome measures. Recruitment and retention of participants is possible if barriers are systematically identified and addressed. This study challenged and developed the research culture within our clinical team and subsequently translated into further research.
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The Guidelines for a Palliative Approach in Residential Aged Care (Australian Government Department of Health and Ageing, 2004) are the result of the synthesis of evidence from three disciplines: geriatrics, gerontology and palliative care. Each paradigm challenges and informs the others, together developing a balanced and enriched understanding of palliative aged care. The guidelines address the challenges of the clinical and service delivery contexts of palliative care in residential aged care facilities, including the impact of complex, co-morbid illnesses with unpredictable trajectories; shorter, more dependent inpatient stays; and an evolving accreditation process.
BACKGROUND: People with a life limiting illness may have unpredictable exacerbations of their symptoms requiring after hours care by general practitioners using medications that are readily accessible. All doctors are provided with injectable 'doctor's bag' emergency drugs for use in such a crisis. OBJECTIVE: This article aims to: identify which medications from the doctor's bag can be used in the palliative care crises that are most frequently encountered, present the best possible evidence for these indications, and to provide GPs caring for palliative care patients after hours with management strategies so, whenever appropriate, they can continue to be managed at home. DISCUSSION: The clinical context, including disease trajectory and patient and caregivers' wishes, must be assessed in palliative care crises. Having excluded reversible problems, symptoms can be treated using doctor's bag medications. Attention must be given to route of administration, duration of effect, and appropriate doses for effective palliation.
BACKGROUND: There is a disparity of availability and cost of drugs in the community for palliative care patients through the Pharmaceutical Benefits Scheme (PBS) compared to those available to inpatients in public hospitals. METHODS: The Joint Therapeutics Committee of the Australian and New Zealand Society of Palliative Medicine, Palliative Care Australia and the Clinical Oncological Society of Australia surveyed palliative care practitioners in Australia to compile a list of drugs they considered essential. RESULTS: Drugs nominated generally had good levels of evidence for use in palliative care, although many practitioners still used some without evidence of benefit. DISCUSSION: We are now working with the Commonwealth Department of Health and Ageing to agree on a list of drugs for specific palliative care indications. As a result, the first ever section in the PBS for a specific patient population has been created. There is a need for high quality studies in palliative care to determine the best drugs to add to the list.
PURPOSE: The research developed and validated palliative care search filters for use in the general biomedical literature. METHODS: Four general medical journals were hand-searched to identify articles relevant to palliative care, forming a "gold standard" reference set. Searches comprising Medical Subject Headings (MeSH) and text-words were created for use in Ovid MEDLINE, and retrieved references were compared to the gold standard. Sensitivity, specificity, accuracy, and precision rates were calculated. RESULTS: By hand-searching 20,501 articles published in the 4 journals during the 3-year study period (1999-2001), reviewers identified 773 items relevant to palliative care (3.8%). A master search combining 9 MeSH descriptors with 3 text-words achieved 45.4% sensitivity, 99.3% specificity, 73% precision, and 97.3% accuracy. Efforts to increase the sensitivity by modifying 3 relevant published but unvalidated searches did not improve the yield, except in 1 case which resulted in an improved sensitivity of 56.9% but was offset by reduced specificity (92.1%), precision (22%), and accuracy (90.8%). CONCLUSIONS: The study confirmed that literature relevant to palliative care is difficult to identify in general medical journals. While the filter developed in this research represents the best trade-off between sensitivity, specificity, accuracy, and precision, the sensitivity is unacceptably low. Further research, such as frequency analysis of text-words and MeSH terms, is required to increase the sensitivity of searching in this subset of the literature.
BACKGROUND: The Karnofsky Performance Status (KPS) is a gold standard scale. The Thorne-modified KPS (TKPS) focuses on community-based care and has been shown to be more relevant to palliative care settings than the original KPS. The Australia-modified KPS (AKPS) blends KPS and TKPS to accommodate any setting of care. METHODS: Performance status was measured using all three scales for palliative care patients enrolled in a randomized controlled trial in South Australia. Care occurred in a range of settings. Survival was defined from enrollment to death. RESULTS: Ratings were collected at 1600 timepoints for 306 participants. The median score on all scales was 60. KPS and AKPS agreed in 87% of ratings; 79% of disagreements occurred within 1 level on the 11-level scales. KPS and TKPS agreed in 76% of ratings; 85% of disagreements occurred within one level. AKPS and TKPS agreed in 85% of ratings; 87% of disagreements were within one level. Strongest agreement occurred at the highest levels (70-90), with greatest disagreement at lower levels (< or =40). Kappa coefficients for agreement were KPS-TKPS 0.71, KPS-AKPS 0.84, and AKPS-TKPS 0.82 (all p < 0.001). Spearman correlations with survival were KPS 0.26, TKPS 0.27 and AKPS 0.26 (all p < 0.001). AKPS was most predictive of survival at the lower range of the scale. All had longitudinal test-retest validity. Face validity was greatest for the AKPS. CONCLUSION: The AKPS is a useful modification of the KPS that is more appropriate for clinical settings that include multiple venues of care such as palliative care.
The demand for palliative care is increasing, yet there are few data on the best models of care nor well-validated interventions that translate current evidence into clinical practice. Supporting multidisciplinary patient-centered palliative care while successfully conducting a large clinical trial is a challenge. The Palliative Care Trial (PCT) is a pragmatic 2 x 2 x 2 factorial cluster randomized controlled trial that tests the ability of educational outreach visiting and case conferencing to improve patient-based outcomes such as performance status and pain intensity. Four hundred sixty-one consenting patients and their general practitioners (GPs) were randomized to the following: (1) GP educational outreach visiting versus usual care, (2) Structured patient and caregiver educational outreach visiting versus usual care and (3) A coordinated palliative care model of case conferencing versus the standard model of palliative care in Adelaide, South Australia (3:1 randomization). Main outcome measures included patient functional status over time, pain intensity, and resource utilization. Participants were followed longitudinally until death or November 30, 2004. The interventions are aimed at translating current evidence into clinical practice and there was particular attention in the trial's design to addressing common pitfalls for clinical studies in palliative care. Given the need for evidence about optimal interventions and service delivery models that improve the care of people with life-limiting illness, the results of this rigorous, high quality clinical trial will inform practice. Initial results are expected in mid 2005.
BACKGROUND: Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. RESULTS: To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. CONCLUSION: CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence.
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This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.
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