BMC Palliat Care 2017 Sep 11;16(1):49. Epub 2017 Sep 11.
Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden.
Background: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. Read More
Background: Family caregiving in the context of advanced disease in particular, can be physically and emotionally taxing. Caregivers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion will develop negative psychological and social outcomes. Although some research has attended to the bereavement experiences of family caregivers who had cared for a person requiring palliative care, a comprehensive qualitative understanding of the impact of caregiving on bereavement has not been articulated. Read More
BMC Palliat Care 2017 Sep 6;16(1):47. Epub 2017 Sep 6.
Universidad de Navarra, ICS, ATLANTES, Campus Universitario, 31080, Pamplona, España.
Background: Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care.
Methods: Qualitative exploratory study based on documentary analysis. Read More
BMC Palliat Care 2017 Sep 4;16(1):46. Epub 2017 Sep 4.
Kaumātua, Te Ārai: Palliative Care and End of Life Research Group, School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.
Background: The World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. Read More
Background: Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers).
Methods: We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U. Read More
BMC Palliat Care 2017 Aug 30;16(1):44. Epub 2017 Aug 30.
Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada.
Background: Measuring the care experience at end-of-life (EOL) to inform quality improvement is a priority in many countries. We validated the CaregiverVoice survey, a modified version of the VOICES questionnaire, completed by bereaved caregivers to capture perceptions of care received in the last three months of a patient's life.
Methods: We conducted a retrospective survey of bereaved caregivers representing palliative care patients who died in a residential hospice and/or received palliative homecare in Ontario, Canada. Read More
BMC Palliat Care 2017 Aug 29;16(1):43. Epub 2017 Aug 29.
School of Medicine, Flinders University South Australia, GPO Box 2100, Adelaide, SA, 5000, Australia.
Background: Completion of Advance Directives (ADs), being financial and healthcare proxy or instructional documents, is relatively uncommon in Australia. Efforts to increase completion rates include online education and prompting which past literature suggests may be effective. The aim of this randomized controlled trial was to assess computer-based online AD information and email prompting for facilitating completion of ADs by Australian Baby Boomers (b. Read More
Background: The Taiwanese government has promoted palliative care consultation services (PCCS) to support terminally ill patients in acute ward settings to receive palliative care since 2005. Such an intervention can enhance the quality of life and dignity of terminally ill patients. However, research focusing on the relationship between the knowledge, attitude and practice of a PCCS using path modelling in nursing staff is limited. Read More
Background: Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. Read More
Background: End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya. Read More
Background: The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research. Read More
Background: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. Read More
Background: Individuals with HIV have a high prevalence of physical and psychological symptoms throughout their disease course. Despite the clinical and public health implications of unresolved pain and symptoms, little is known about the effect of anti-retroviral therapy (ART) on these outcomes. This study aimed to assess the impact on symptom burden for the year after ART initiation in individuals with a CD4 count <200 cells/uL in Uganda. Read More
Background: Inpatient, generalist social workers in discharge planning roles work alongside specialist palliative care social workers to care for patients, often resulting in two social workers being concurrently involved in the same patient's care. Previous studies identifying components of effective collaboration, which impacts patient outcomes, care efficiency, professional job satisfaction, and healthcare costs, were conducted with nurses and physicians but not social workers. This study explores ward social workers' perceptions of what facilitates or hinders collaboration with palliative care social workers. Read More
Background: Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning. Read More
Background: The objective of the Balearic Islands Palliative Care (PC) Program is to improve the quality of PC through a shared model consisting of primary health care professionals, home-based PC teams, and PC units in hospitals. According to the World Health Organization (WHO), patients with advanced cancer and other terminal diseases benefit from early identification and proactive PC. We will evaluate the effectiveness of an intervention in which a PC leader is established in the primary health care center, and assess the effect of this intervention on the early identification of patients in need of PC, the efficient use of health care services, and direct health care costs. Read More
Background: Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. Read More
Background: Maintaining a sense of self-care while providing patient centered care, can be difficult for practitioners in palliative medicine. We aimed to pilot an "on the job" mindfulness and compassion-oriented meditation training for interdisciplinary teams designed to reduce distress, foster resilience and strengthen a prosocial motivation in the clinical encounter.
Methods: Our objective was to explore the feasibility and effectiveness of this newly developed training. Read More
Background: A compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections. Read More
Background: There is limited population-level research on end-of-life care in Australia that considers health care use and costs across hospital and community sectors. The aim of this study was to quantify health care use and costs in the last 6 months of life in a cohort of elderly Australian decedents and to examine the factors associated with end-of-life resource use and costs.
Methods: A retrospective cohort study using routinely collected health data from Australian Government Department of Veterans' Affairs clients. Read More
Background: This study aimed to examine the status of undergraduate palliative care education among Japanese medical students using data from a survey conducted in 2015.
Methods: A questionnaire was originally developed, and the survey forms were sent to universities. The study's objectives, methods, disclosure of results, and anonymity were explained to participating universities in writing. Read More
Background: Few services are available to support rural older adults living at home with advancing chronic illness. The objective of this project was to pilot a nurse-led navigation service to provide early palliative support for rural older adults and their families living at home with advancing chronic illness.
Methods: Twenty-five older adults and 11 family members living with advancing chronic illness received bi-weekly home visits by a nurse navigator over a 2-year period. Read More
Background: Hospital-based Palliative Care Consultation Teams (PCCTs) have a consulting role to specialist services at their request. Referral of patients is often late. Early palliative care in oncology has shown its effectiveness in improving quality of life, thereby questioning the "on request" model of PCCTs. Read More
Background: Dyspnoea is a disabling symptom in patients admitted with heart failure (HF) and respiratory diseases (RD). The main aim of this study is to evaluate its intensity at admission and discharge and the relation with quality of life. We also describe its management, intensity, and evolution in HF and RD. Read More
Background: As in other areas of health delivery, there is a need to ensure that end-of-life care is guided by patient centred research. A systematic review was undertaken to examine the quantity and quality of data-based research aimed at improving the (a) processes and (b) outcomes associated with delivering end-of-life care in hospital settings.
Methods: Medline, EMBASE and Cochrane databases were searched between 1995 and 2015 for data-based papers. Read More
Background: The purpose of this study was to compare the differences across occupational groups related to their end-of-life care-specific educational needs and reported intensity of interprofessional collaboration in long-term care (LTC) homes.
Methods: A cross-sectional survey, based on two questionnaires, was administered at four LTC homes in Ontario, Canada using a modified Dilman's approach. The first questionnaire, End of Life Professional Caregiver Survey, included three domains: patients and family-centered communication, cultural and ethical values, effective care delivery. Read More
Background: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. Read More
Background: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.
Methods: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). Read More
Background: The practice of continuous deep sedation is a challenging clinical intervention with demanding clinical and ethical decision-making. Though current research indicates that healthcare professionals' involvement in such decisions is associated with emotional stress, little is known about sedation-related emotional burden. This study aims to systematically review the evidence on the impact of the inpatient practice of continuous deep sedation until death on healthcare professionals' emotional well-being. Read More
Background: Confinement to an in-patient hospital ward impairs patients' sense of social support and connectedness. Providing the means, through communication technology, for patients to maintain contact with friends and family can potentially improve well-being at the end of life by minimizing social isolation and facilitating social connection. This study aimed to explore the feasibility of introducing internet-based communication and information technologies for in-patients and their families and to describe their experience in using this technology. Read More
Background: When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.
Methods: In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. Read More
Background: It is estimated that 19 to 83% of people with dementia suffer from pain that is inadequately treated in the last months of life. A large number of healthcare workers who care for these people in nursing homes lack appropriate expertise and may therefore not always recognise, assess and treat pain in those with dementia who have complex problems on time, properly and efficiently. The aim of this intervention trial is to identify care needs of people with dementia suffering from pain living in a nursing home. Read More
Background: Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care. Read More
Background: Despite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation. Read More
Background: Though most models of palliative care specifically include spiritual care as an essential element, secular health care organizations struggle with supporting spiritual care for people who are dying and their families. Organizations often leave responsibility for such care with individual care providers, some of whom are comfortable with this role and well supported, others who are not. This study looked to hospice programs founded and operated on specific spiritual foundations to identify, if possible, organizational-level practices that support high-quality spiritual care that then might be applied in secular healthcare organizations. Read More
Background: Caregiving is strenuous and it may be associated with adverse psychological outcomes. During the palliative care trajectory, there are unique opportunities for providing support and preventing poor bereavement outcome. However, the tasks of palliative care staff in relation to caregivers are often unclear in the daily practice. Read More
Background: A continuous subcutaneous infusion (CSCI) delivered via syringe pump is a method of drug administration used to maintain symptom control when a patient is no longer able to tolerate oral medication. Several classes of drugs, such as opioids, antiemetics, anticholinergics, antipsychotics and benzodiazepines are routinely administered by CSCI alone or in combinations. Previous studies attempting to identify the most-common CSCI combinations are now several years old and no longer reflect current clinical practice. Read More
Background: Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both). Read More
Background: Little is known about palliative care professionals' attitudes towards guidelines. In 2015, the German Association for Palliative Medicine (DGP) published an evidence based guideline for palliative care in adults with incurable cancer. Before publication we conducted a national survey among members of the DGP to detect possible barriers and facilitators for its implementation. Read More
Background: It has been found that including volunteers in palliative care is a positive contribution to seriously ill patients. It is, however, recommended that the volunteers are trained and supported. The aim of this study was to describe a group of trained and supported volunteers' lived experiences as volunteers in palliative care within the community health care services. Read More
Background: Salvage chemotherapy is the mainstay of treatment for metastatic gastric cancer (mGC). This study aimed to clarify the effects of palliative gastrectomy (PG) and identify prognostic factors in mGC patients undergoing PG.
Methods: This was a retrospective review of 333 mGC patients receiving PG or a non-resection procedure (NR) between 2000 and 2010. Read More
Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. Read More
Background: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children's hospice. Read More
Background: Geographical accessibility is important in accessing healthcare services. Measuring it has evolved alongside technological and data analysis advances. High correlations between different methods have been detected, but no comparisons exist in the context of palliative and end of life care (PEoLC) studies. Read More
Background: Recognising dying is an essential clinical skill for general and palliative care professionals alike. Despite the high importance, both identification and good clinical care of the dying patient remains extremely difficult and often controversial in clinical practice. This study aimed to answer the question: "What factors influence medical and nursing staff when recognising dying in end-stage cancer and heart failure patients?"
Methods: This study used a descriptive approach to decision-making theory. Read More
Background: Over the past decades there has been a significant increase in the number of published clinical trials in palliative care. However, empirical evidence suggests that there are methodological problems in the design and conduct of studies, which raises questions about the validity and generalisability of the results and of the strength of the available evidence. We sought to evaluate the methodological characteristics and assess the quality of reporting of clinical trials in palliative care. Read More
Background: Education in palliative medicine (PM) at medical schools reveals wide variation despite the increasing importance of palliative care. Many universities present poor description of the benefits and detailed content of the total curriculum in PM. Using the recommendations of European Association for Palliative Care (EAPC) as a reference, we evaluated the content and outcomes of the curriculum in PM at the University of Tampere, Finland. Read More
Background: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child.
Methods: Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions. Read More
Background: An advance directive (AD) is a written or verbal document that legally stipulates a person's health care preference while they are competent to make decisions for themselves and is used to guide decisions on life-sustaining treatment in the event that they become incapacitated. AD can take the form of a living will, a limitation of care document, a do-not-resuscitate order, or an appointment of a surrogate by durable power of attorney. The completion rate of AD varies from region to region, and it is influenced by multiple factors. Read More