Background:The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap.Aim and design:This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families.Data sources:Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers.Results:Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients.Conclusion:This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.
BackgroundPopulation ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia.MethodA rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006).ResultsOf 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time.ConclusionModels of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia’s health system.
Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.
Previously there has been commitment to the idea that Indigenous curricula should be taught by Indigenous academic staff, whereas now there is increasing recognition of the need for all academic staff to have confidence in enabling Indigenous cultural competency for nursing and other health professional students. In this way, Indigenous content can be threaded throughout a curriculum and raised in many teaching and learning situations, rather than being siloed into particular subjects and with particular staff. There are many sensitivities around this change, with potential implications for Indigenous and non-Indigenous students and staff, and for the quality of teaching and learning experiences. This paper reports on a collaborative process that was used to reconceptualise how Indigenous health care curricula would be positioned throughout a programme and who would or could work with students in this area. Effective leadership, establishing a truly collaborative environment, acknowledging fears and perceived inadequacies, and creating safe spaces for sharing and learning were crucial in effecting this change.
Background: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. Aim: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. Design: An exploratory qualitative study using semi-structured interviews. Setting/participants: Participants were recruited through five hospitals in New South Wales, Australia. Results: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. Conclusions: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.
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