Palliative medicine
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Palliative medicine · Jan 2021
Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare.
Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. ⋯ Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.
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Palliative medicine · Jan 2021
End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis.
Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis. ⋯ The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.
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Palliative medicine · Jan 2021
ReviewThe palliative care needs and experiences of people with advanced head and neck cancer: A scoping review.
The palliative care needs of people with advanced head and neck cancer pose unique complexities due to the impact the illness has on eating, speaking, appearance and breathing. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. ⋯ This scoping review demonstrates the complexity of care for people with advanced head and neck cancer and the issues related to the current healthcare systems. Focus on appropriate referral criteria, increased integration and coordination of care and robust evaluation of specific care components seems key. Linkage between research and service design delivery across teams, disciplines and care settings seems pertinent.
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Palliative medicine · Jan 2021
ReviewThe support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review.
Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. ⋯ Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
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Palliative medicine · Jan 2021
Physicians' predictions of long-term survival and functional outcomes do not influence the decision to admit patients with advanced disease to intensive care: A prospective study.
Long-term survival and functional outcomes should influence admission decisions to intensive care, especially for patients with advanced disease. ⋯ ICU admissions of patients with advanced disease were determined by short-term survival benefit, and not by long-term prognosis. Advance care planning and developing decision-aid tools for triage could help limit potentially inappropriate admissions to intensive care.