Palliative medicine
-
Palliative medicine · Jul 2023
ReviewNeuropalliative care for progressive neurological diseases: A scoping review on models of care and priorities for future research.
Neuropalliative care is a newly-defined subspeciality bringing specific aspects of fields of neurology and palliative care together to better meet the complex care needs of people with progressive neurological diseases. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. ⋯ Most models of neuropalliative care described in the international literature are predominantly outpatient, multidisciplinary and integrative. Clinicians typically utilise existing neurology and palliative care infrastructure to provide care. More high-quality research and outcome tools are needed to guide the design of evidence-based palliative care for people with progressive neurological diseases.
-
Palliative medicine · Jul 2023
Serious illness care quality during COVID-19: Identifying improvement opportunities in narrative reports from a National Bereaved Family Survey.
COVID-19 significantly impacted care delivery to seriously ill patients, especially around including family and caregivers in patient care. ⋯ The findings from this quality improvement project are applicable during a pandemic, but also translate to improving the care of seriously ill patients in other circumstances, such as when family members or caregivers are geographically distant from a loved one during the last weeks of life.
-
Palliative medicine · Jul 2023
Observational StudyIatrogenic suffering at the end of life: An ethnographic study.
Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people's actual experiences of suffering in this clinical setting. ⋯ Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care.
-
Palliative medicine · Jul 2023
ReviewThe emotional effects on professional interpreters of interpreting palliative care conversations for adult patients: A rapid review.
Professional interpreters working in palliative contexts improve patient care. Whilst literature identifies psychological distress in other healthcare professionals, research into emotional effects on professional interpreters in this highly emotive setting is limited. Isolating emotional responses may enable targeted interventions to enhance interpreter use and improve wellbeing. Timely evidence is needed to urgently familiarise the profession with issues faced by these valuable colleagues, to affect practice. ⋯ Professional interpreters experience myriad emotional responses to palliative conversations. Role clarity, collaborative working and formal training may alleviate negative effects.
-
Palliative medicine · Jul 2023
'It is easier to not allow them to see your disability straight away, to see you as a person': An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy.
Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. ⋯ An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy.