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BMC Palliative Care

Arno Maetens, Robrecht De Schreye, Kristof Faes, Dirk Houttekier, Luc Deliens, Birgit Gielen, Cindy De Gendt, Patrick Lusyne, Lieven Annemans, Joachim Cohen
BACKGROUND: The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. METHODS: Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies...
October 18, 2016: BMC Palliative Care
Kaisa Rajala, Juho T Lehto, M Saarinen, E Sutinen, T Saarto, M Myllärniemi
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive disease with median survival from 2 to 7 years. Palliative care is an important part of patients´ care as lung transplantation is not an option for the majority of patients. The aim of this study was to describe treatment practices, decision-making and symptoms during end-of-life care of IPF patients. METHODS: We identified 59 deceased patients from a national prospective IPF cohort study (FinnishIPF) and analyzed retrospectively their health care documentation during the 6 months that preceded death...
October 12, 2016: BMC Palliative Care
Miriam Galvin, Bernie Corr, Caoifa Madden, Iain Mays, Regina McQuillan, Virpi Timonen, Anthony Staines, Orla Hardiman
BACKGROUND: Caregiver burden affects the physical, psychological and emotional well-being of the caregiver. The purpose of this analysis was to describe an informal caregiver cohort (n = 81), their subjective assessment of burden and difficulties experienced as a result of providing care to people with Amyotrophic Lateral Sclerosis (ALS). METHODS: Using mixed methods of data collection and analysis, we undertook a comprehensive assessment of burden and difficulties associated with informal caregiving in ALS...
September 5, 2016: BMC Palliative Care
Tuva Sandsdalen, Vigdis Abrahamsen Grøndahl, Reidun Hov, Sevald Høye, Ingrid Rystedt, Bodil Wilde-Larsson
BACKGROUND: Patients' perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients' perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings. METHOD: A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients' Perspective instrument-palliative care (QPP-PC)...
August 24, 2016: BMC Palliative Care
Eduardo Garralda, Jeroen Hasselaar, José Miguel Carrasco, Karen Van Beek, Naouma Siouta, Agnes Csikos, Johan Menten, Carlos Centeno
BACKGROUND: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. METHODS: Systematic review of the literature about IPC published in Spain between 1995 and 2013...
May 13, 2016: BMC Palliative Care
Naouma Siouta, Karen van Beek, Nancy Preston, Jeroen Hasselaar, Sean Hughes, Sheila Payne, Eduardo Garralda, Carlos Centeno, Marlieke van der Eerden, Marieke Groot, Farina Hodiamont, Lukas Radbruch, Csilla Busa, Agnes Csikos, Johan Menten
BACKGROUND: Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. METHODS: Search results were screened by two reviewers...
February 13, 2016: BMC Palliative Care
Samantha Hollingworth, Jianzhen Zhang, Bharat Phani Vaikuntam, Claire Jackson, Geoffrey Mitchell
BACKGROUND: To plan integrated care at end of life for people with either heart failure or lung disease, we used a case conference between the patient's general practitioner (GP), specialist services and a palliative care consultant physician. This intervention significantly reduced hospitalisations and emergency department visits. This paper reports estimates of potential savings of reduced hospitalisation through end of life case conferences in a pilot study. METHODS: We used Australian Refined Diagnosis Related Group codes to obtain data on hospitalisations and costs...
2016: BMC Palliative Care
Xhyljeta Luta, Radoslaw Panczak, Maud Maessen, Matthias Egger, David C Goodman, Marcel Zwahlen, Andreas E Stuck, Kerri Clough-Gorr
BACKGROUND: Institutional deaths (hospitals and nursing homes) are an important issue because they are often at odds with patient preference and associated with high healthcare costs. The aim of this study was to examine deaths in institutions and the role of individual, regional, and healthcare supply characteristics in explaining variation across Swiss Hospital Service Areas (HSAs). METHODS: Retrospective study of individuals ≥66 years old who died in a Swiss institution (hospital or nursing homes) in 2010...
2016: BMC Palliative Care
Jeffrey Goldhagen, Mark Fafard, Kelly Komatz, Terry Eason, William C Livingood
No abstract text is available yet for this article.
2016: BMC Palliative Care
Stefanie Eicher, Nathan Theill, Heike Geschwindner, Caroline Moor, Albert Wettstein, Gabriela Bieri-Brüning, Christoph Hock, Mike Martin, Henrike Wolf, Florian Riese
BACKGROUND: The proportion of older people with advanced dementia who will die in nursing homes is constantly growing. However, little is known about the dying phase, the type of symptoms, the management of symptoms and the quality of life and dying in people with advanced dementia. The ZULIDAD (Zurich Life and Death with Advanced Dementia) study aims at extending the current scientific knowledge by providing first data from Switzerland. METHODS: The ZULIDAD study employs a prospective design to study nursing home residents with advanced dementia for three years or until their death in eleven nursing homes in Zurich...
2016: BMC Palliative Care
Susan Fryer, Gary Bellamy, Tessa Morgan, Merryn Gott
BACKGROUND: In most developed countries, Health Care Assistants comprise a significant, and growing, proportion of the residential aged care workforce. Despite the fact that they provide the majority of direct care for residents, little is known about a key care aspect of their work, namely their experience of caring for dying residents. METHODS: Twenty-six Health Care Assistants working in aged residential care facilities in Auckland, New Zealand participated in six focus group discussions...
2016: BMC Palliative Care
Nathan Davies, Rammya Mathew, Jane Wilcock, Jill Manthorpe, Elizabeth L Sampson, Kethakie Lamahewa, Steve Iliffe
No abstract text is available yet for this article.
2016: BMC Palliative Care
Jeanette Ziehm, Erik Farin, Katharina Seibel, Gerhild Becker, Stefan Köberich
BACKGROUND: Even though struggling with similar symptom burden, patients with chronic heart failure (CHF) receive less palliative care than patients suffering from malignant diseases. Researchers have found that this might be related to lack of knowledge about palliative care, insufficient interprofessional communication as well as the cyclic course of disease which makes accurate prognosis difficult. However, research findings have shown that patients with CHF benefit from palliative care...
2016: BMC Palliative Care
Isabel Kiesewetter, Christian Schulz, Claudia Bausewein, Rita Fountain, Andrea Schmitz
BACKGROUND: Medical errors have been recognized as a relevant public health concern and research efforts to improve patient safety have increased. In palliative care, however, studies on errors are rare and mainly focus on quantitative measures. We aimed to explore how palliative care patients perceive and think about errors in palliative care and to generate an understanding of patients' perception of errors in that specialty. METHODS: A semistructured qualitative interview study was conducted with patients who had received at least 1 week of palliative care in an inpatient or outpatient setting...
2016: BMC Palliative Care
Juliano Ferreira Arcuri, Ebun Abarshi, Nancy J Preston, Jenny Brine, Valéria Amorim Pires Di Lorenzo
BACKGROUND: Respiratory secretions impact negatively on palliative patients. Unfortunately, a gold standard therapy is not yet available. The purpose of this study was to identify which interventions are in use to control respiratory secretions in patients with chronic disease with a poor prognosis and verify their effects on outcomes relevant for palliative care patients. METHODS: A systematic review of the literature with narrative summary was conducted. We searched eight electronic databases in April (6th), 2016...
2016: BMC Palliative Care
Jeffrey Goldhagen, Mark Fafard, Kelly Komatz, Terry Eason, William C Livingood
BACKGROUND: Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes...
2016: BMC Palliative Care
Nathan Davies, Rammya Mathew, Jane Wilcock, Jill Manthorpe, Elizabeth L Sampson, Kethakie Lamahewa, Steve Iliffe
BACKGROUND: The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. METHODS: An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals...
2016: BMC Palliative Care
Adriana Coelho, Vitor Parola, Miguel Escobar-Bravo, João Apóstolo
BACKGROUND: Palliative care aims to provide maximum comfort to the patient. However it is unknown what factors facilitate or hinder the experience of comfort, from the perspective of inpatients of palliative care units. This lack of knowledge hinders the development of comfort interventions adjusted to these patients. The aim of this research is to describe the comfort and discomfort experienced by inpatients at palliative care units. METHODS: A phenomenological descriptive study was undertaken...
2016: BMC Palliative Care
Steve Iliffe, Nathan Davies, Jill Manthorpe, Peter Crome, Sam H Ahmedzai, Myrra Vernooij-Dassen, Yvonne Engels
BACKGROUND: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. METHODS: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings...
2016: BMC Palliative Care
Claire Lewis, Joanne Reid, Zara McLernon, Rory Ingham, Marian Traynor
BACKGROUND: The concerns of undergraduate nursing and medical students' regarding end of life care are well documented. Many report feelings of emotional distress, anxiety and a lack of preparation to provide care to patients at end of life and their families. Evidence suggests that increased exposure to patients who are dying and their families can improve attitudes toward end of life care. In the absence of such clinical exposure, simulation provides experiential learning with outcomes comparable to that of clinical practice...
2016: BMC Palliative Care
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