BMC palliative care
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BMC palliative care · Nov 2015
Randomized Controlled TrialPragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol.
Care for people with advanced dementia requires a palliative approach targeted to the illness trajectory and tailored to individual needs. However, care in nursing homes is often compromised by poor communication and limited staff expertise. This paper reports the protocol for the IDEAL Project, which aims to: 1) compare the efficacy of a facilitated approach to family case conferencing with usual care; 2) provide insights into nursing home- and staff-related processes influencing the implementation and sustainability of case conferencing; and 3) evaluate cost-effectiveness. ⋯ The IDEAL Project will make an important contribution to the evidence base for dementia-specific case conferencing in nursing homes by considering processes and contextual factors as well as overall efficacy. Its strengths and weaknesses will both lie in its pragmatic design.
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BMC palliative care · Nov 2015
Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands.
Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality palliative care, clinical practice guidelines are needed. The aim of this study is to improve palliative care for children by making high quality care recommendations to recognize and relieve symptoms in paediatric palliative care. ⋯ Hardly any evidence is available for the treatment of symptoms in paediatric palliative care. By combining evidence for adult palliative care and the sparse evidence for paediatric palliative care with expert opinion we defined a unique set of high quality care recommendations to relieve symptoms and lessen the suffering of children in palliative care. These results are an important tool to educate caregivers on how to relieve symptoms in children in paediatric palliative care.
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BMC palliative care · Nov 2015
Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals.
People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. ⋯ The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care.
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BMC palliative care · Oct 2015
Promoting an ethic of engagement in pediatric palliative care research.
This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. ⋯ PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
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BMC palliative care · Oct 2015
Exploring barriers to assessment of bereavement risk in palliative care: perspectives of key stakeholders.
Palliative care standards advocate support for grieving caregivers, given that some bereaved people fail to integrate their loss, experience ongoing emotional suffering and adverse health outcomes. Research shows that bereavement support tends to be delivered on an ad hoc basis without formal assessment of risk or need. To align support with need, assessment of bereavement risk is necessary. The overall aim is to develop a bereavement risk assessment model, based on a three-tiered public health model, congruent with palliative care bereavement standards for use in palliative care in Western Australia. The specific aim of this phase of the study was to explore the perspectives of key stakeholders and to highlight issues in relation to the practice of bereavement risk assessment in palliative care. ⋯ These group discussions provide a data-driven explanation of the issues affecting bereavement risk assessment in palliative care settings. A number of barriers will need to be overcome before assessment can become routine practice. We recommend the development of a brief, pre-death caregiver self-report measure of bereavement risk that may empower caregivers, lead to early intervention, and allow staff to remain focused on patient care, reducing burden on staff and palliative care services.