Palliative medicine
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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.
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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.
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Palliative medicine · Jul 2023
ReviewAn examination and proposed theoretical model of risk and protective factors for bereavement outcomes for family members of individuals who engaged in medical aid in dying: A systematic review.
Medical Aid in Dying is an end-of-life option that allows a physician to provide a patient with a prescription to end their life. Though Medical Aid in Dying intends to reduce suffering for a patient, opponents argue Medical Aid in Dying may increase suffering for the family members during bereavement. To better understand the bereavement outcomes for family members/friends following Medical Aid in Dying, an exhaustive review of the risk and protective factors for bereavement outcomes is warranted. ⋯ This study provides equivocal results about the effects of Medical Aid in Dying on family members following the loss. The theoretical model outlines potential risk and protective factors. This model provides a greater understanding of possible universal risk and protective factors for family members of individuals who engaged in Medical Aid in Dying.
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Palliative medicine · Jul 2023
How patients with advanced cancer conceptualize prognosis: A phenomenological qualitative inquiry.
Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define "prognosis." ⋯ Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.
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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.