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BMC Palliative Care

Shane Sinclair, Priya Jaggi, Thomas F Hack, Susan E McClement, Shelley Raffin-Bouchal, Pavneet Singh
BACKGROUND: A lack of evidence and psychometrically sound measures of compassion necessitated the development of the first known, empirically derived, theoretical Patient Compassion Model (PCM) generated from qualitative interviews with advanced cancer inpatients. We aimed to assess the credibility and transferability of the PCM across diverse palliative populations and settings. METHODS: Semi-structured, audio-recorded qualitative interviews were conducted with 20 patients with life-limiting diagnoses, recruited from 4 settings (acute care, homecare, residential care, and hospice)...
September 13, 2018: BMC Palliative Care
Alexandra K Superdock, Raymond C Barfield, Debra H Brandon, Sharron L Docherty
BACKGROUND: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important...
September 12, 2018: BMC Palliative Care
Lucas Pieper, Julia Wager, Boris Zernikow
BACKGROUND: Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use...
September 10, 2018: BMC Palliative Care
Harriëtte J van Esch, Lia van Zuylen, Esther Oomen-de Hoop, Agnes van der Heide, Carin C D van der Rijt
BACKGROUND: Death rattle (DR), caused by mucus in the respiratory tract, occurs in about half of patients who are in the dying phase. Relatives often experience DR as distressing. Anticholinergics are recommended to treat DR, although there is no evidence for the effect of these drugs. Anticholinergic drugs decrease the production of mucus but do not affect existing mucus. We therefore hypothesize that these drugs are more effective when given prophylactically. METHODS: We set up a randomized double-blind, placebo-controlled, multi-center study evaluating the efficacy of prophylactically given subcutaneous scopolaminebutyl for the prevention of DR in the dying phase...
September 7, 2018: BMC Palliative Care
Alexandre de Nonneville, Théo Chabal, Anthony Marin, Jean Marc La Piana, Marie Fichaux, Véronique Tuzzolino, Florence Duffaud, Pascal Auquier, Augustin Boulanger, Karine Baumstark, Sébastien Salas
BACKGROUND: Opinion about euthanasia has been explored among the general population and recently in patients receiving palliative care. 96% of the French population declared themselves in favor of euthanasia while less of 50% of palliative care patients are. The aim of the present study was to explore and identify potential determinant factors associated with favorable or unfavorable opinion about euthanasia in a French population of cancer patients receiving palliative care. METHODS: We performed a cross-sectional study among patients in two palliative care units...
August 29, 2018: BMC Palliative Care
Naoki Sakakibara, Takahiro Higashi, Itsuku Yamashita, Tetsusuke Yoshimoto, Motohiro Matoba
BACKGROUND: The Pain Management Index (PMI) is widely used in the assessment of pain management, and negative scores are traditionally considered to indicate inadequate pain management. However, it is not known whether negative PMI scores are always problematic. METHODS: In this prospective observational study, we examined the data of 1156 patients with cancer and pain who were hospitalized in a cancer care hospital in Japan from July 2012 to January 2015 and compared the proportion of patients with PI across various PMI scores in this cohort...
August 24, 2018: BMC Palliative Care
N Siouta, P Clement, B Aertgeerts, K Van Beek, J Menten
BACKGROUND: Patients with Chronic Heart Failure (CHF) and patients with Chronic Obstructive Pulmonary Disease (COPD) share similar symptom burden with cancer patients, however, they are unlikely to receive palliative care (PC) services. This article examines the perceptions of health care professionals and the current practices of integrated palliative care (IPC) in Belgium. METHODS: Cardiologists and pulmonologists, working in primary care hospitals in Belgium, participated in this study with semi-structured interviews based on IPC indicators...
August 24, 2018: BMC Palliative Care
Anastasia K Kalpakidou, Chris Todd, Vaughan Keeley, Jane Griffiths, Karen Spencer, Victoria Vickerstaff, Rumana Z Omar, Patrick Stone
BACKGROUND: More accurate methods of prognostication are likely to lead to improvements in the quality of care of patients approaching the ends of their lives. The Prognosis in Palliative care Scales (PiPS) are prognostic models of survival. The scores are calculated using simple clinical data and observations. There are two separate PiPS models; PiPS-A for patients without blood test results and PiPS-B for patients with blood test results. Both models predict whether a patient is likely to live for "days", "weeks" or "months" and have been shown to perform as well as clinicians' estimates of survival...
August 13, 2018: BMC Palliative Care
Christy Noble, Laurie Grealish, Andrew Teodorczuk, Brenton Shanahan, Balaji Hiremagular, Jodie Morris, Sarah Yardley
BACKGROUND: There is a pressing need to improve end-of-life care in acute settings. This requires meeting the learning needs of all acute care healthcare professionals to develop broader clinical expertise and bring about positive change. The UK experience with the Liverpool Care of the Dying Pathway (LCP), also demonstrates a greater focus on implementation processes and daily working practices is necessary. METHODS: This qualitative study, informed by Normalisation Process Theory (NPT), investigates how a tool for end-of-life care was embedded in a large Australian teaching hospital...
August 8, 2018: BMC Palliative Care
Tae-Kyu Jang, Dae-Yeon Kim, Shin-Wha Lee, Jeong-Yeol Park, Dae-Shik Suh, Jong-Hyeok Kim, Yong-Man Kim, Young-Tak Kim, Joo-Hyun Nam
BACKGROUND: Palliative chemotherapy should be used with caution when attempting to alleviate symptoms in patients with end-stage cancer. However, palliative chemotherapy continues to be utilized in cancer patients during their last stages of life. In this study, we analyzed the pattern of chemotherapy administered during the last 6 months of life in patients with end-stage gynecologic cancer who were treated with active palliative chemotherapy for the past 10 years. METHOD: We retrospectively analyzed the data for patients with gynecologic cancer who died after undergoing active palliative chemotherapy without receiving hospice management at Asan Medical Center from 2006 to 2015...
August 7, 2018: BMC Palliative Care
Elizabeth Somes, Joanna Dukes, Adreanne Brungardt, Sarah Jordan, Kristen DeSanto, Christine D Jones, Urvi Jhaveri Sanghvi, Khadijah Breathett, Jacqueline Jones, Hillary D Lum
BACKGROUND: Laypersons including volunteers, community health navigators, or peer educators provide important support to individuals with serious illnesses in community or healthcare settings. The experiences of laypersons in communication with seriously ill peers is unknown. METHODS: We performed an ENTREQ-guided qualitative meta-synthesis. We conducted a systematic search of MEDLINE, PsycINFO, CINAHL, Cochrane Library, and AMED to include qualitative studies with data regarding communication and laypersons in advance care planning, palliative care, or end-of-life settings...
August 6, 2018: BMC Palliative Care
Anne Ebenau, Boukje Dijkstra, Marianne Stal-Klapwijk, Chantal Ter Huurne, Ans Blom, Kris Vissers, Marieke Groot
BACKGROUND: The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals' responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals', patients' and proxies' perspective...
August 3, 2018: BMC Palliative Care
Tao Wang, Alex Molassiotis, Betty Pui Man Chung, Jing-Yu Tan
BACKGROUND: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment. METHODS: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included...
July 23, 2018: BMC Palliative Care
Reetta P Piili, Juho T Lehto, Tiina Luukkaala, Heikki Hinkka, Pirkko-Liisa I Kellokumpu-Lehtinen
BACKGROUND: Characteristics of the physician influence the essential decision-making in end-of-life care. However, the effect of special education in palliative medicine on different aspects of decision-making in end-of-life care remains unknown. The aim of this study was to explore the decision-making in end-of-life care among physicians with or without special competency in palliative medicine (cPM). METHODS: A questionnaire including an advanced lung cancer patient-scenario with multiple decision options in end-of-life care situation was sent to 1327 Finnish physicians...
July 18, 2018: BMC Palliative Care
Britt Viola Danielsen, Anne Marit Sand, Jan Henrik Rosland, Oddvar Førland
BACKGROUND: Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The aim of this study was to achieve more insight, through home care nurses and general practitioners, of conditions that facilitate or hamper more time at home and more home deaths for patients with terminal disease and short life expectancy. METHODS: We used a qualitative research design with four focus groups with a total of 19 participants, of either home care nurses or general practitioners, using semi-structured question guides...
July 18, 2018: BMC Palliative Care
Barbara A Jack, Tracy K Mitchell, Mary R O'Brien, Sergio A Silverio, Katherine Knighting
BACKGROUND: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place...
July 13, 2018: BMC Palliative Care
Katharina Fetz, Hendrik Vogt, Thomas Ostermann, Andrea Schmitz, Christian Schulz-Quach
BACKGROUND: The implementation of standardised, valid and reliable measurements in palliative care is subject to practical and methodological challenges. One aspect of ongoing discussion is the value of systematic proxy-based assessment of symptom burden in palliative care. In 2011, an expert-developed proxy-based instrument for the assessment of symptom burden in palliative patients, the Palliative Symptom Burden Score (PSBS), was implemented at the Specialised Palliative Care Unit of the University Medical Centre in Dusseldorf, Germany...
July 7, 2018: BMC Palliative Care
Anne Black, Tamsin McGlinchey, Maureen Gambles, John Ellershaw, Catriona Rachel Mayland
BACKGROUND: There is limited understanding of the 'lived experience' of palliative care patient within the acute care setting. Failing to engage with and understand the views of patients and those close to them, has fundamental consequences for future health delivery. Understanding 'patient experience' can enable care providers to ensure services are responsive and adaptive to individual patient need. METHODS: The aim of this study was to explore the 'lived experience' of a group of patients with palliative care needs who had recently been in-patients in one acute hospital trust in the north-west of England...
July 6, 2018: BMC Palliative Care
Emma Kirby, Zarnie Lwin, Katherine Kenny, Alex Broom, Holi Birman, Phillip Good
BACKGROUND: The end of life represents a therapeutic context that acutely raises cultural and linguistic specificities, yet there is very little evidence illustrating the importance of such dynamics in shaping choices, trajectories and care practices. Culture and language interplay to offer considerable potential challenges to both patient and provider, with further work needed to explore patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives...
July 2, 2018: BMC Palliative Care
Sandra Martins Pereira, Joana Araújo, Pablo Hernández-Marrero
BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants. METHODS: An action-research study was conducted at a local community parish in Portugal in November 2015...
June 29, 2018: BMC Palliative Care
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