Palliative medicine
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Palliative medicine · Oct 2022
Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study.
People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. ⋯ Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.
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Palliative medicine · Oct 2022
'You can't feel what we feel': Multifaceted dyspnoea invisibility in advanced chronic obstructive pulmonary disease examined through interpretative phenomenological analysis.
More than a symptom, dyspnoea is an existential experience shaping the lives of those afflicted, particularly when its persistence despite maximal pathophysiological treatments makes it pervasive. It is, however, insufficiently appreciated by concerned people themselves, family members, healthcare professionals and the public (dyspnoea invisibility), limiting access to appropriate care and support. ⋯ The study confirmed that dyspnoea invisibility is a reality for people with advanced chronic obstructive pulmonary disease. It shows dyspnoea invisibility to be a multifaceted burden. Future research should aim at identifying individual and collective measures to overcome dyspnoea invisibility.
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Palliative medicine · Sep 2022
'It's not just all about the fancy words and the adults': Recommendations for practice from a qualitative interview study with children and young people with a parent with a life-limiting illness.
Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. ⋯ Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children.
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Palliative medicine · Sep 2022
How much information is 'reasonable'? A qualitative interview study of the prescribing practices of palliative care professionals.
Prescribing clinicians have to negotiate ambiguities around information provision and consent for medications on a daily basis, despite the availability of professional guidance. ⋯ Information provision about medication choices and effects is a demanding, ongoing process, requiring nuanced judgements that constitute an unacknowledged yet significant aspect of clinical workload. Although current medical guidelines allow clinical discretion about information provision, this can leave individual clinicians feeling vulnerable. Further evolution of guidelines needs to establish a more sophisticated way to acknowledge professional and legal requirements, whilst also promoting professional autonomy and judgement.
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Palliative medicine · Sep 2022
The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals' and patient and family carers' perspectives.
Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. ⋯ The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.