The care of patients whose illnesses cannot be cured places many stresses on health professionals (both generalist and specialist), and more importantly on patients and families. The complexities for all concerned in the process of referral to palliative care services should not be underestimated, however there is evidence that the referral process could be better handled by all health professionals. With greater understanding of the dynamics of care, the crisis of living with an incurable illness and dying can be lessened for patients. This article reports on a qualitative research project undertaken at a large metropolitan palliative care service and its referring public hospital. Patients and nurses were interviewed to identify issues relating to the care of patients and families newly referred to palliative care. The findings of this research identify themes in relation to the transition of patients from acute curative to palliative care services, e.g. pace and timing of the transition, fear and (mis)understanding, accepting palliative care, information and education on palliative care, and peer support and supervision for palliative care nurses.
BackgroundWith over half of expected deaths occurring in acute hospitals, and a workforce not trained to care for them, good quality end-of-life care in these settings is hard to achieve. The National Consensus Statement on Essential Elements for Safe and High-Quality End-of-Life Care has been translated into e-learning modules by the End of Life Essentials project, and this study aims to demonstrate how clinicians interpret the Consensus Statement in their day-to-day practice by answering the question at the end of each module: ‘Tomorrow, the one thing I can change to more appropriately provide end-of-life care is…’MethodsThe modules were developed by a palliative care educator with the support of a peer review group and were piloted with 35 health professionals. Pre-post module evaluation data were collected and during a 10-month period from 2016 to 2017 a total of 5181 individuals registered for the project accessing one or more of the six modules. The data from 3201 free-text responses to the post hoc practice change question have been analysed, and themes generated.FindingsFive themes are derived from the data: communication, emotional insight, professional mindset, person-centred care and professional practice.ConclusionLearners who have completed End of Life Essentials have shared the ways they state they can change their practice tomorrow which may well be appreciated as a clinical response to the work by the Australian Commission on Safety and Quality in Health Care in leading and coordinating national improvements in quality and safety in healthcare in Australia. While intent cannot guarantee practice change, theory on intention—behaviour relations indicate that intentions have a strong association with behaviour. This indicates that the modules have the ability to influence end-of-life care in acute hospitals.
Chronic complex illness/multimorbidity is a leading cause of death worldwide. Many people with chronic complex illnesses die in hospital, with the overall quality of end-of-life care requiring substantial improvement, necessitating an increase in the knowledge of the health professionals caring for them. End-of-Life-Essentials (EOLE) offers online education modules for health professionals working in acute hospitals, including one on chronic complex illness. A quantitative pre–post-evaluation analysis was undertaken on data from learners (n = 1489), who completed a questionnaire related to knowledge gained from module completion between December 2018 and November 2019. A qualitative post-evaluation analysis was also conducted using data on learner responses to a question posed between May and November 2019. Results showed a significant positive impact on learners’ knowledge, skill, attitude, and confidence in providing end-of-life care to patients living with chronic complex illness. The majority (82.9%, n = 900) intended to change their practice after module completion. A total of n = 559 qualitative comments were analysed thematically, with three major themes emerging: Patient centred care and care planning, Discussion of prognosis, and Valued communication skills. This evaluation has demonstrated that healthcare professionals could benefit from this education to improve quality of care of the dying.
Health outcomes are being promoted as a necessary evaluation measure in health care services. Less often discussed is the notion that health outcomes are artificially designated endpoints and that different people in the health system have different ideas of what the outcomes ought to be. Whose evidence is acceptable and relevant in constructing a framework of health outcomes in palliative care? This paper presents the findings of a research project undertaken in New South Wales, Australia, on health outcomes as evaluated by patients and caregivers. A wide range of health care professionals also participated. Patients and caregivers valued outcomes or endpoints in palliative care that were not necessarily brought about by expert clinical intervention. By adopting too narrow an interpretation of outcomes we risk sacrificing that which is uniquely valuable in palliative care services.
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