Articles: palliative-care.
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BMC palliative care · Apr 2021
The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data.
Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be 'sudden' death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. ⋯ This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians' uncertainties may not always reflect or match up with families' uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.
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Patients in need of palliative care often want to reside at home. Providing palliative care requires resources and a high level of competence in primary care. The Norwegian guideline for palliative care points to the central role of the regular general practitioner (RGP), specifying a high expected level of competence. Guideline implementation is known to be challenging in primary care. This study investigates adherence to the guideline, the RGPs experience with, and view of their role in palliative care. ⋯ This study demonstrated low adherence of the RGPs, to the Norwegian guideline for palliative care. Guideline requirements may not correspond with the methods of general practice, making them difficult to adopt. The RGPs seemed to have too few clinical cases over time to maintain skills at a complex and specialized level. Yet, there seems to be a great potential for the RGP, with the inherent specialist skills of the general practitioner, to be a key worker in the palliative care trajectory.
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Pediatric blood & cancer · Apr 2021
Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home-based end-of-life care.
Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. ⋯ Pediatric palliative care telehealth combined with adult-trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home-based hospice care.
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The will to live (WTL) is an important factor to consider in the context of providing resource-oriented palliative care. Until now, there has been no major review of the existing research on this subject. ⋯ A considerable yet unconnected body of studies assesses the WTL. Its assessment in clinical routine could promote resource-oriented and patient-centered care.