Palliative medicine
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Palliative medicine · Dec 2021
The impact of digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care: A systematic review and narrative synthesis.
Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychological wellbeing. However, the extent to which the psychological outcomes of digital health interventions are assessed is currently unknown. ⋯ Despite the design and development of digital health interventions that span the technological landscape, little research has assessed their psychosocial impact in the paediatric palliative care community. Whilst the evidence base around the role of these interventions continues to grow, their impact on children and their families must not be overlooked.
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Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. ⋯ End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.
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Palliative medicine · Dec 2021
Operationalizing legal rights in end-of- life decision-making: A qualitative study.
For a patient's legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. ⋯ In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.
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Palliative medicine · Dec 2021
Case ReportsMonitoring the depth of palliative sedation by video-pupillometry: A case report.
Palliative sedation is sometimes interrupted by undesired arousals. Pupillometry has been used in anesthesiology to monitor pain and sedation but has never been used during palliative sedation. ⋯ Prospective studies are needed to confirm our findings. Pupillometry's acceptability should also be questioned from patient's, families', and caregivers' perspectives.
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Palliative medicine · Dec 2021
A good death in the child with life shortening illness: A qualitative multiple-case study.
Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear. ⋯ Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.