Problematizing Disciplinarity, Transdisciplinary Problematics.

PubMed

Osborne, Peter

2015-09-01

This article situates current debates about transdisciplinarity within the deeper history of academic disciplinarity, in its difference from the notions of inter- and multi-disciplinarity. It offers a brief typology and history of established conceptions of transdisciplinarity within science and technology studies. It then goes on to raise the question of the conceptual structure of transdisciplinary generality in the humanities, with respect to the incorporation of the 19th- and 20th-century German and French philosophical traditions into the anglophone humanities, under the name of 'theory'. It identifies two distinct - dialectical and anti-dialectical, or dialectical and transversal - transdisciplinary trajectories. It locates the various contributions to the special issue of which it is the introduction within this conceptual field, drawing attention to the distinct contribution of the French debates about structuralism and its aftermath - those by Serres, Foucault, Derrida, Guattari and Latour, in particular. It concludes with an appendix on Foucault's place within current debates about disciplinarity and academic disciplines.

Hypnosis in palliative care: from clinical insights to the science of self-regulation.

PubMed

Landry, Mathieu; Stendel, Moriah; Landry, Michel; Raz, Amir

2018-01-01

Palliative care spans a wide-ranging spectrum: from pain-management to spiritual support. As the demand for end-of-life care increases, so does the demand for innovative, effective, interventions. Mind-body techniques seem especially advantageous in a palliative context. Here we show that hypnosis serves an excellent adjunct therapy in palliative care to boost the efficacy of standard treatments. With the overarching goal of bridging clinical and scientific insights, we outline how five core principles of hypnosis can benefit the diverse needs of palliative care.

Transdisciplinary approaches enhance the production of translational knowledge.

PubMed

Ciesielski, Timothy H; Aldrich, Melinda C; Marsit, Carmen J; Hiatt, Robert A; Williams, Scott M

2017-04-01

The primary goal of translational research is to generate and apply knowledge that can improve human health. Although research conducted within the confines of a single discipline has helped us to achieve this goal in many settings, this unidisciplinary approach may not be optimal when disease causation is complex and health decisions are pressing. To address these issues, we suggest that transdisciplinary approaches can facilitate the progress of translational research, and we review publications that demonstrate what these approaches can look like. These examples serve to (1) demonstrate why transdisciplinary research is useful, and (2) stimulate a conversation about how it can be further promoted. While we note that open-minded communication is a prerequisite for germinating any transdisciplinary work and that epidemiologists can play a key role in promoting it, we do not propose a rigid protocol for conducting transdisciplinary research, as one really does not exist. These achievements were developed in settings where typical disciplinary and institutional barriers were surmountable, but they were not accomplished with a single predetermined plan. The benefits of cross-disciplinary communication are hard to predict a priori and a detailed research protocol or process may impede the realization of novel and important insights. Overall, these examples demonstrate that enhanced cross-disciplinary information exchange can serve as a starting point that helps researchers frame better questions, integrate more relevant evidence, and advance translational knowledge more effectively. Specifically, we discuss examples where transdisciplinary approaches are helping us to better explore, assess, and intervene to improve human health. Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.

Complex, Dynamic Systems: A New Transdisciplinary Theme for Applied Linguistics?

ERIC Educational Resources Information Center

Larsen-Freeman, Diane

2012-01-01

In this plenary address, I suggest that Complexity Theory has the potential to contribute a transdisciplinary theme to applied linguistics. Transdisciplinary themes supersede disciplines and spur new kinds of creative activity (Halliday 2001 [1990]). Investigating complex systems requires researchers to pay attention to system dynamics. Since…

Evaluation of palliative care nursing education seminars.

PubMed

Ferrell, Betty; Virani, Rose; Paice, Judith A; Coyle, Nessa; Coyne, Patrick

2010-02-01

More than 50 million people die each year around the world. Nurses are crucial in providing care to these individuals and their families as they spend the most time at the bedside with patients and families. Yet many nurses have received little or no education about palliative care. The Open Society Institute (OSI) and the Open Medical Institute (OMI) partnered with End-of-Life Nursing Education Consortium (ELNEC) to develop an international nursing palliative care curriculum. This international curriculum was implemented with two training courses held in Salzburg, Austria in October 2006 (n=38) and April 2008 (n=39) representing 22 Eastern European/Central Asian countries. Participants were asked to establish goals in disseminating the palliative care information when they returned to their country. The participants were mentored/followed for a 12-month period to evaluate their palliative care knowledge as well as challenges encountered. The participants provided excellent ratings for the training courses indicating that the courses were stimulating and met their expectations. The 12-month follow-up demonstrated many challenges (i.e., lack of funds, institutional support, fear of death), in advancing palliative care within each participant's setting/country as well as many examples of successful implementation. There is an urgent need for improved palliative care throughout the world. The ELNEC-International curriculum is designed to address the need for increased palliative care education in nursing. In order to improve the quality of life for those facing life-threatening illnesses around the world, ongoing support is needed for world-wide palliative care educational efforts. Copyright 2009 Elsevier Ltd. All rights reserved.

Implementation of Potential of the Transdisciplinary Approaches in Economic Studies

ERIC Educational Resources Information Center

Stepanova, Tatiana E.; Manokhina, Nadeghda V.; Konovalova, Maria E.; Kuzmina, Olga Y.; Andryukhina, Lyudmila M.

2016-01-01

The relevance of the researched problem is caused by the increasing interest in using potential of transdisciplinary approaches, and mathematical methods, which include the game theory in analysis of public and economic processes. The aim of the article is studying a possibility of implementation of the transdisciplinary approaches in economic…

Problematizing Disciplinarity, Transdisciplinary Problematics

PubMed Central

2015-01-01

This article situates current debates about transdisciplinarity within the deeper history of academic disciplinarity, in its difference from the notions of inter- and multi-disciplinarity. It offers a brief typology and history of established conceptions of transdisciplinarity within science and technology studies. It then goes on to raise the question of the conceptual structure of transdisciplinary generality in the humanities, with respect to the incorporation of the 19th- and 20th-century German and French philosophical traditions into the anglophone humanities, under the name of ‘theory’. It identifies two distinct – dialectical and anti-dialectical, or dialectical and transversal – transdisciplinary trajectories. It locates the various contributions to the special issue of which it is the introduction within this conceptual field, drawing attention to the distinct contribution of the French debates about structuralism and its aftermath – those by Serres, Foucault, Derrida, Guattari and Latour, in particular. It concludes with an appendix on Foucault’s place within current debates about disciplinarity and academic disciplines. PMID:26456992

Transdisciplinary Research and Evaluation for Community Health Initiatives

PubMed Central

Harper, Gary W.; Neubauer, Leah C.; Bangi, Audrey K.; Francisco, Vincent T.

2010-01-01

Transdisciplinary research and evaluation projects provide valuable opportunities to collaborate on interventions to improve the health and well-being of individuals and communities. Given team members’ diverse backgrounds and roles or responsibilities in such projects, members’ perspectives are significant in strengthening a project’s infrastructure and improving its organizational functioning. This article presents an evaluation mechanism that allows team members to express the successes and challenges incurred throughout their involvement in a multisite transdisciplinary research project. Furthermore, their feedback is used to promote future sustainability and growth. Guided by a framework known as organizational development, the evaluative process was conducted by a neutral entity, the Quality Assurance Team. A mixed-methods approach was utilized to garner feedback and clarify how the research project goals could be achieved more effectively and efficiently. The multiple benefits gained by those involved in this evaluation and implications for utilizing transdisciplinary research and evaluation teams for health initiatives are detailed. PMID:18936267

Retrospective analysis of pharmacist interventions in an ambulatory palliative care practice.

PubMed

Ma, Joseph D; Tran, Victor; Chan, Carissa; Mitchell, William M; Atayee, Rabia S

2016-12-01

We have previously reported the development of an outpatient palliative care practice under pharmacist-physician collaboration. The Doris A. Howell Service at the University of California, San Diego Moores Cancer Center includes two pharmacists who participate in a transdisciplinary clinic and provide follow-up care to patients. This study evaluated pharmacist interventions and patient outcomes of a pharmacist-led outpatient palliative care practice. This was a retrospective data analysis conducted at a single, academic, comprehensive cancer center. New (first visit) patient consultations were referred by an oncologist or hematologist to an outpatient palliative care practice. A pharmacist evaluated the patient at the first visit and at follow-up (second, third, and fourth visits). Medication problems identified, medication changes made, and changes in pain scores were assessed. Eighty-four new and 135 follow-up patient visits with the pharmacist occurred from March 2011 to March 2012. All new patients (n = 80) were mostly women (n = 44), had localized disease (n = 42), a gastrointestinal cancer type (n = 21), and were on a long-acting (n = 61) and short-acting (n = 70) opioid. A lack of medication efficacy was the most common problem for symptoms of pain, constipation, and nausea/vomiting that was identified by the pharmacist at all visits. A change in pain medication dose and initiation of a new medication for constipation and nausea/vomiting were the most common interventions by the pharmacist. A statistically significant change in pain score was observed for the third visit, but not for the second and fourth visits. A pharmacist-led outpatient palliative care practice identified medication problems for management of pain, constipation, and nausea/vomiting. Medication changes involved a change in dose and/or initiating a new medication. Trends were observed in improvement and stabilization of pain over subsequent clinic visits. © The

Preparing Emerging Doctoral Scholars for Transdisciplinary Research: A Developmental Approach

PubMed Central

Kemp, Susan P.; Nurius, Paula S.

2015-01-01

Research models that bridge disciplinary, theoretical, and methodological boundaries are increasingly common as funders and the public push for timely, effective, collaborative responses to pressing social and environmental problems. Although social work is inherently an integrative discipline, there is growing recognition of the need to better prepare emerging scholars for sophisticated transdisciplinary and translational research environments. This paper outlines a developmental, competency-oriented approach to enhancing the readiness of doctoral students and emerging scholars in social work and allied disciplines for transdisciplinary research, describes an array of pedagogical tools applicable in doctoral course work and other program elements, and urges coordinated attention to enhancing the field’s transdisciplinary training capacity. PMID:26005286

Measuring societal effects of transdisciplinary research projects: design and application of an evaluation method.

PubMed

Walter, Alexander I; Helgenberger, Sebastian; Wiek, Arnim; Scholz, Roland W

2007-11-01

Most Transdisciplinary Research (TdR) projects combine scientific research with the building of decision making capacity for the involved stakeholders. These projects usually deal with complex, societally relevant, real-world problems. This paper focuses on TdR projects, which integrate the knowledge of researchers and stakeholders in a collaborative transdisciplinary process through structured methods of mutual learning. Previous research on the evaluation of TdR has insufficiently explored the intended effects of transdisciplinary processes on the real world (societal effects). We developed an evaluation framework for assessing the societal effects of transdisciplinary processes. Outputs (measured as procedural and product-related involvement of the stakeholders), impacts (intermediate effects connecting outputs and outcomes) and outcomes (enhanced decision making capacity) are distinguished as three types of societal effects. Our model links outputs and outcomes of transdisciplinary processes via the impacts using a mediating variables approach. We applied this model in an ex post evaluation of a transdisciplinary process. 84 out of 188 agents participated in a survey. The results show significant mediation effects of the two impacts "network building" and "transformation knowledge". These results indicate an influence of a transdisciplinary process on the decision making capacity of stakeholders, especially through social network building and the generation of knowledge relevant for action.

Promoting innovation: Enhancing transdisciplinary opportunities for medical and engineering students.

PubMed

Brazile, Tiffany; Hostetter Shoop, Glenda; McDonough, Christine M; Van Citters, Douglas W

2018-01-30

Addressing current healthcare challenges requires innovation and collaboration. Current literature provides limited guidance in promoting these skills in medical school. One approach involves transdisciplinary training in which students from different disciplines work together toward a shared goal. We assessed the need for such a curriculum at Dartmouth College. We surveyed medical and engineering students' educational values; learning experiences; professional goals; and interest in transdisciplinary education and innovation. Data were analyzed using descriptive statistics. Shared values among student groups included leadership development, innovation, collaboration, and resource sharing. Medical students felt their curriculum inadequately addressed creativity and innovation relative to their engineering counterparts (p < 0.05). Medical students felt less prepared for entrepreneurial activities (p < 0.05), while engineering students indicated a need for basic medical knowledge and patient-oriented design factors. Despite strong interest, collaboration was less than 50% of indicated interest. Medical and engineering students share an interest in the innovation process and need a shared curriculum to facilitate collaboration. A transdisciplinary course that familiarizes students with this process has the potential to promote physicians and engineers as leaders and innovators who can effectively work across industry lines. A transdisciplinary course was piloted in Spring 2017.

Supportive and palliative care for patients with chronic mental illness including dementia.

PubMed

Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline

2014-09-01

People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.

Communication as a core skill of palliative surgical care.

PubMed

Miner, Thomas J

2012-03-01

Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills. Copyright © 2012 Elsevier Inc. All rights reserved.

The development of hospital-based palliative care services in public hospitals in the Western Cape, South Africa.

PubMed

Gwyther, L; Krause, R; Cupido, C; Stanford, J; Grey, H; Credé, T; De Vos, A; Arendse, J; Raubenheimer, P

2018-02-01

With the recent approval of a South African (SA) National Policy Framework and Strategy for Palliative Care by the National Health Council, it is pertinent to reflect on initiatives to develop palliative care services in public hospitals. This article reviews the development of hospital-based palliative care services in the Western Cape, SA. Palliative care services in SA started in the non-governmental sector in the 1980s. The first SA hospital-based palliative care team was established in Charlotte Maxeke Johannesburg Academic Hospital in 2001. The awareness of the benefit of palliative care in the hospital setting led to the development of isolated pockets of excellence providing palliative care in the public health sector in SA. This article describes models for palliative care at tertiary, provincial and district hospital level, which could inform development of hospital-based palliative care as the national policy for palliative care is implemented in SA.

Contextualizing neuro-collaborations: reflections on a transdisciplinary fMRI lie detection experiment

PubMed Central

Littlefield, Melissa M.; Fitzgerald, Des; Knudsen, Kasper; Tonks, James; Dietz, Martin J.

2014-01-01

Recent neuroscience initiatives (including the E.U.’s Human Brain Project and the U.S.’s BRAIN Initiative) have reinvigorated discussions about the possibilities for transdisciplinary collaboration between the neurosciences, the social sciences, and the humanities. As STS scholars have argued for decades, however, such inter- and transdisciplinary collaborations are potentially fraught with tensions between researchers. This essay build on such claims by arguing that the tensions of transdisciplinary research also exist within researchers’ own experiences of working between disciplines - a phenomenon that we call “disciplinary double consciousness” (DDC). Building on previous work that has characterized similar spaces (and especially on the Critical Neuroscience literature), we argue that “neuro-collaborations” inevitably engage researchers in DDC - a phenomenon that allows us to explore the useful dissonance that researchers can experience when working between a “home” discipline and a secondary discipline. Our case study is a five-year research project in functional magnetic resonance imaging (fMRI) lie detection involving a transdisciplinary research team made up of social scientists, a neuroscientist, and a humanist. In addition to theorizing neuro-collaborations from the inside-out, this essay presents practical suggestions for developing transdisciplinary infrastructures that could support future neuro-collaborations. PMID:24744713

The Scholars We Need: Preparing Transdisciplinary Professionals by Leveraging the Scholarship of Practice

ERIC Educational Resources Information Center

McDaniels, Melissa; Skogsberg, Erik

2017-01-01

In this chapter we call for immediate action to prepare more dynamic transdisciplinary professionals by leveraging the scholarship of practice. Transdisciplinary refers to contexts both inside and outside of the academy where today's doctoral students will work.

Transdisciplinary Qualities in Practice Doctorates

ERIC Educational Resources Information Center

Costley, Carol; Pizzolato, Nicola

2018-01-01

Doctoral programmes in which candidates research their own practice can be characterised as having transdisciplinary (TD) qualities. While most of the emphasis in the literature and in policy on TD is on research in teams, we argue for an expansion of the scope in the conception and understanding of TD research to include the way it can be…

Communication skills in palliative surgery: skill and effort are key.

PubMed

Miner, Thomas J

2011-04-01

Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills. Copyright © 2011 Elsevier Inc. All rights reserved.

Synecdoche and Surprise: Transdisciplinary Knowledge Production

ERIC Educational Resources Information Center

Dalke, Anne; McCormack, Elizabeth F.

2007-01-01

Using contemporary insights from feminist critical theory and the literary device of synecdoche, we argue that transdisciplinary knowledge is productive because it maximizes serendipity. We draw on student learning experiences in a course on "Gender and Science" to illustrate how the dichotomous frameworks and part-whole correspondences that are…

Solving problems in social-ecological systems: definition, practice and barriers of transdisciplinary research.

PubMed

Angelstam, Per; Andersson, Kjell; Annerstedt, Matilda; Axelsson, Robert; Elbakidze, Marine; Garrido, Pablo; Grahn, Patrik; Jönsson, K Ingemar; Pedersen, Simen; Schlyter, Peter; Skärbäck, Erik; Smith, Mike; Stjernquist, Ingrid

2013-03-01

Translating policies about sustainable development as a social process and sustainability outcomes into the real world of social-ecological systems involves several challenges. Hence, research policies advocate improved innovative problem-solving capacity. One approach is transdisciplinary research that integrates research disciplines, as well as researchers and practitioners. Drawing upon 14 experiences of problem-solving, we used group modeling to map perceived barriers and bridges for researchers' and practitioners' joint knowledge production and learning towards transdisciplinary research. The analysis indicated that the transdisciplinary research process is influenced by (1) the amount of traditional disciplinary formal and informal control, (2) adaptation of project applications to fill the transdisciplinary research agenda, (3) stakeholder participation, and (4) functional team building/development based on self-reflection and experienced leadership. Focusing on implementation of green infrastructure policy as a common denominator for the delivery of ecosystem services and human well-being, we discuss how to diagnose social-ecological systems, and use knowledge production and collaborative learning as treatments.

Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

PubMed

Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

The Complexity of Transdisciplinary Literature Reviews

ERIC Educational Resources Information Center

Montuori, Alfonso

2013-01-01

The transdisciplinary literature review is an opportunity to situate the inquirer in an ecology of ideas. This article explores how we might approach this process from a perspective of complexity, and addresses some of the key challenges and opportunities. Four main dimensions are considered: (a) inquiry-based rather than discipline-based; (b)…

On Achieving Transdisciplinary Outcomes from Synergistic Research Efforts in the Northern Gulf of Mexico

NASA Astrophysics Data System (ADS)

Hagen, S. C.

2017-12-01

Multiple federal initiatives aim to evaluate and enhance sustainability and resilience at the coastal-land margin. Progressive efforts undertaken in the northern Gulf of Mexico for more than ten years have resulted in synergistic research with multiple means of federal support. Major grants include the FEMA Flood Insurance Studies, the NOAA / NOS Ecological Effects of Sea Level Rise Program, as well as the NSF Coastal SEES Program. Through a careful development of a collective enterprise the results from these and other individual programs (e.g., NOAA Sea Grant College, DHS Center of Excellence, NSF Rapid Response) have been elevated to achieve transdisciplinary outcomes. A direct product of the synergy is a system of systems approach to bio-geophysical science with the inclusion of socioeconomic processes.

A Transdisciplinary Training Program for Behavioral Oncology and Cancer Control Scientists

PubMed Central

McDaniel, Anna M.; Champion, Victoria L.; Kroenke, Kurt

2008-01-01

Transdisciplinary health research training has been identified as a major initiative to achieve the vision for research teams of the future as articulated in the NIH Roadmap for Medical Research. To address the need for scientists who can integrate diverse scientific approaches and work in transdisciplinary teams to solve complex health problems, Indiana University has designed an innovative training program that will provide the didactic and research experiences to enable trainees to establish productive careers in behavioral oncology and cancer control research. Development of a successful transdisciplinary training program requires mentorship, research, and a specialized curriculum that encompass a broad range of disciplines. The program capitalizes on a unique set of existing and emerging training opportunities resulting from the collaborative activities of the Indiana University (IU) Simon Cancer Center, the IU Schools of Nursing and Medicine, and multiple research institutes and academic centers located in Indiana and neighboring states. PMID:18501750

Implementing Routine Palliative Care Consultation Before LVAD Implantation: A Single Center Experience.

PubMed

Salomon, Say; Frankel, Hilary; Chuang, Elizabeth; Eti, Serife; Selwyn, Peter

2018-05-01

Left ventricular assist devices (LVADs) are increasingly used to improve quality of life for end-stage heart failure patients. The Joint Commission now requires preimplantation palliative care assessment; however, many palliative care teams have little experience providing this service. To describe the integration of palliative services at one Center of Excellence for Heart and Vascular Care. This is a retrospective chart review of all patients receiving LVADs at a single urban academic medical center from January 2015 to September 2016. Palliative care needs and services provided are described. Two case presentations illustrate the collaboration between the cardiothoracic and palliative care teams. Fifty one patients were included. Of those, 28 received a palliative care consultation during this roll-out period. The rate of consultation rose from 35% to 71% as workflows improved with institutional commitment. Symptom assessment, psychosocial assessment, and advance care planning (ACP) were always performed (n = 28; 100%). More than half of the patients were evaluated for dyspnea (n = 20; 71%), fatigue (n = 18; 64%), and pain (n = 16; 57%). Consults centered around ACP, and very few patients (n = 7; 25%) required palliative care follow-up. Palliative consultation did not delay LVAD placement. Although palliative care consultants provided initial evaluation and management of multiple symptoms, there was not a large ongoing need. Integration of palliative services into the care of patients receiving LVADs can be incorporated into the workflow of the cardiothoracic and palliative care teams, resulting in improved ACP for all patients receiving LVADs and better care coordination for patients at the end of life. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Comfort in palliative sedation (Compas): a transdisciplinary mixed method study protocol for linking objective assessments to subjective experiences.

PubMed

Six, Stefaan; Laureys, Steven; Poelaert, Jan; Bilsen, Johan; Theuns, Peter; Deschepper, Reginald

2018-04-18

In case of untreatable suffering at the end of life, palliative sedation may be chosen to assure comfort by reducing the patient's level of consciousness. An important question here is whether such sedated patients are completely free of pain. Because these patients cannot communicate anymore, caregivers have to rely on observation to assess the patient's comfort. Recently however, more sophisticated techniques from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study is to better understand how unconscious palliative sedated patients experience the last days of their life and to find out if they are really free of pain. In this study we will observe 40 patients starting with initiation of palliative sedation until death. Assessment of comfort based on behavioral observations will be related with the results from a NeuroSense monitor, an EEG-based monitor used for evaluation of the adequacy of anesthesia and sedation in the operating room and an ECG-based Analgesia Nociception Index (ANI) monitor, which informs about comfort or discomfort condition, based on the parasympathetic tone. An innovative and challenging aspect of this study is its qualitative approach; "objective" and "subjective" data will be linked to achieve a holistic understanding of the study topic. The following data will be collected: assessment of pain/comfort by the patients themselves (if possible) by scoring a Visual Analogue Scale (VAS); brain function monitoring; monitoring of parasympathetic tone; caregivers' assessment (pain, awareness, communication); relatives' perception of the quality of the dying process; assessment by 2 trained investigators using observational scales; video and audio registration. Measuring pain and awareness in non-communicative dying patients is both technically and ethically challenging. ANI and EEG have shown to be promising technologies to detect pain that otherwise

Palliative Care

MedlinePlus

... can be provided along with curative treatment. Improves Quality of Life Palliative care teams specialize in treating people suffering ... In short, palliative care will help improve your quality of life. Close Communication The palliative care team will also ...

Transdisciplinary translational behavioral (TDTB) research: opportunities, barriers, and innovations.

PubMed

Czajkowski, Susan M; Lynch, Minda R; Hall, Kara L; Stipelman, Brooke A; Haverkos, Lynne; Perl, Harold; Scott, Marcia S; Shirley, Mariela C

2016-03-01

The translation of basic behavioral science discoveries into practical strategies represents a promising approach to developing more effective preventive interventions to improve health. Since translational research inevitably involves making use of diverse perspectives from multiple disciplines, it is best conducted as a transdisciplinary enterprise. In this paper, we discuss current strategies used by NIH to support transdisciplinary translational behavioral (TDTB) research, summarize successful efforts, and highlight challenges encountered in conducting such work (ranging from conceptual to organizational to methodological). Using examples from NIH-funded projects we illustrate the potential benefits of, and barriers to, pursuing this type of research and discuss next steps and potential future directions for NIH-supported TDTB research.

Sustainability Science as a Transdisciplinary Framework for Institutional Transformation at Unity College

NASA Astrophysics Data System (ADS)

Mulkey, S. S.

2012-12-01

Interdisciplinary programming in higher education is accepted as necessary for effective instructional delivery of complex environmental problems. Difficulties in sharing resources among disciplinary units and the need for students to sequentially access information from different disciplines limit the effectiveness of this approach. In contrast, transdisciplinary programming requires that the perspectives of various disciplines be simultaneously integrated in problem-focused pedagogy. Unity College, an environmental college in Maine, has recently adopted Sustainability Science (sensu U.S. National Academy of Science) as a framework for transdisciplinary pedagogy throughout all of its degree programs. Sustainability Science is a promising alternative framework that focuses on the dynamics of coupled human-natural systems and is defined by the problems that it addresses rather than by the disciplines it employs. Students are empowered to become brokers of knowledge, while faculty perform a curatorial role to provide students with networked resources generally external to the classroom. Although the transdisciplinary framework is effective for delivery of Sustainability Science in upper division and capstone courses, we propose this approach also for elements of our general education curriculum during the first two years of our baccalaureate programs. Classroom time is liberated for experiential student engagement and recitation. Our experience suggests that transdisciplinary programming can provide students with critical thinking skills and thus enhance the postgraduate value of their baccalaureate degree. We are coordinating the development of this distinctive curriculum delivery with a marketing program that will make Unity College accessible to a wider range of clientele. Our implementation of transdisciplinary programming will occur over a four-year period and requires explicit and fundamental change in essentially all aspects of College administration and

Peer-professional workgroups in palliative care: a strategy for advancing professional discourse and practice.

PubMed

Byock, Ira; Twohig, Jeanne Sheils; Merriman, Melanie; Collins, Karyn

2006-08-01

As part of a comprehensive national effort to improve care at the end of life, the Promoting Excellence in End-of-Life Care program of The Robert Wood Johnson Foundation convened "national peer-professional workgroups" of recognized authorities or leaders to advance palliative aspects of practice in their respective specialties or fields. The conveners' goals were to establish research and practice agendas to integrate palliative care within selected fields and health care settings, and to expand delivery of palliative care to special patient populations that have been underserved by palliative care. We hypothesized that leading professionals within specific fields, chartered to achieve clear goals, and then provided with sufficient administrative and logistical support, could develop recommendations for expanding access to, quality of and financing for palliative care within their disciplines. Staff at the national program office of Promoting Excellence in End-of-Life Care convened eight disease-based, specialty-based or issue-based workgroups (the selected workgroup topics were amyotrophic lateral sclerosis, cost accounting, critical care, end-stage renal disease, human immunodeficiency virus/acquired immune deficiency syndrome [HIV/AIDS] disease, Huntington's disease, pediatric care, and surgical palliative care). The national program office implemented a small group process design in convening the groups, and provided coordination, oversight and administrative support, along with funds to support meetings (telephone and in-person). A workgroup "charter" guided groups in determining the scope of efforts and set specific, time-limited goals. From the outset, the workgroups developed plans for dissemination of workgroup recommendations to defined stakeholder audiences, including health care providers, policy-makers, payers, researchers, funders, educators, professional organizations and patient advocacy groups. Groups averaged 25 members and met for an average of

Undertaking Individual Transdisciplinary PhD Research for Sustainable Development: Case Studies from South Africa

ERIC Educational Resources Information Center

van Breda, John; Musango, Josephine; Brent, Alan

2016-01-01

Purpose: This paper aims to improve the understanding of individual transdisciplinary PhD research in a developing country context, focusing on three individual PhD case studies in South Africa. Design/Methodology/Approach: Multiple-case method was used, and three completed transdisciplinary PhD research efforts undertaken at the Stellenbosch…

Transdisciplinary synthesis for ecosystem science, policy and management: The Australian experience.

PubMed

Lynch, A J J; Thackway, R; Specht, A; Beggs, P J; Brisbane, S; Burns, E L; Byrne, M; Capon, S J; Casanova, M T; Clarke, P A; Davies, J M; Dovers, S; Dwyer, R G; Ens, E; Fisher, D O; Flanigan, M; Garnier, E; Guru, S M; Kilminster, K; Locke, J; Mac Nally, R; McMahon, K M; Mitchell, P J; Pierson, J C; Rodgers, E M; Russell-Smith, J; Udy, J; Waycott, M

2015-11-15

Mitigating the environmental effects of global population growth, climatic change and increasing socio-ecological complexity is a daunting challenge. To tackle this requires synthesis: the integration of disparate information to generate novel insights from heterogeneous, complex situations where there are diverse perspectives. Since 1995, a structured approach to inter-, multi- and trans-disciplinary(1) collaboration around big science questions has been supported through synthesis centres around the world. These centres are finding an expanding role due to ever-accumulating data and the need for more and better opportunities to develop transdisciplinary and holistic approaches to solve real-world problems. The Australian Centre for Ecological Analysis and Synthesis (ACEAS ) has been the pioneering ecosystem science synthesis centre in the Southern Hemisphere. Such centres provide analysis and synthesis opportunities for time-pressed scientists, policy-makers and managers. They provide the scientific and organisational environs for virtual and face-to-face engagement, impetus for integration, data and methodological support, and innovative ways to deliver synthesis products. We detail the contribution, role and value of synthesis using ACEAS to exemplify the capacity for synthesis centres to facilitate trans-organisational, transdisciplinary synthesis. We compare ACEAS to other international synthesis centres, and describe how it facilitated project teams and its objective of linking natural resource science to policy to management. Scientists and managers were brought together to actively collaborate in multi-institutional, cross-sectoral and transdisciplinary research on contemporary ecological problems. The teams analysed, integrated and synthesised existing data to co-develop solution-oriented publications and management recommendations that might otherwise not have been produced. We identify key outcomes of some ACEAS working groups

Transdisciplinary assignments in graduate health education as a model for future collaboration.

PubMed

Christie, Catherine; Smith, A Russell; Bednarzyk, Michele

2007-01-01

Transdisciplinary health care continues to be at the forefront of patient treatment in the medical arena, in part due to escalating health care costs, an increasing aging population, and the development of multiple chronic diseases. Gaining the knowledge, experience, and principles associated with transdisciplinary teamwork to successfully prepare for modern-day practice is therefore essential for individuals of various health care professions. This report describes an assignment developed and implemented to facilitate professional interaction between graduate physical therapy, nutrition, and nursing students. The objectives of this assignment were to determine through student evaluation the effects of a transdisciplinary experience on students' understanding of the role of another discipline and students' communication skills across disciplines. When evaluating the assignment, students most often remarked that they developed a greater understanding of the roles of the included disciplines and reported a significant increase in communication skills. However, some students did not concur that this assignment was effective due to the scheduling conflicts and lack of teamwork that can occur during a collaborative project. The students' reports of their experiences in completing the assignment provide valuable insights for implementing and/or updating a preparatory transdisciplinary education component in other settings. Additional research can focus on the challenges faced by the majority of the students venturing into actual health care or "real-world" settings for comparative studies.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

PubMed

Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

2014-01-01

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

Poverty Reduction in India through Palliative Care: A Pilot Project.

PubMed

Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare - a pilot project. EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Poverty of palliative care patients 18% of households enrolled for palliative care earn palliative care patients had lost their livelihoods due to illness26% of patients' families had members who had lost livelihoods due to the illnessBefore palliative care, 80% of households paid for medicine, treatment, laboratory tests and travel to healthcare98% of enrolled households have debts; 59% had sold assets to gain 0-interest loans69% of households took out their debt after their family member fell ill11% of enrolled households receive government

Poverty Reduction in India through Palliative Care: A Pilot Project

PubMed Central

Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare – a pilot project. Settings and Design: EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. Subjects and Methods: EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. Statistical Analysis: An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Results: Poverty of palliative care patients 18% of households enrolled for palliative care earn palliative care patients had lost their livelihoods due to illness26% of patients' families had members who had lost livelihoods due to the illnessBefore palliative care, 80% of households paid for medicine, treatment, laboratory tests and travel to healthcare98% of enrolled households have debts; 59% had sold assets to gain 0-interest loans69% of households

Assessing the Validity of Discourse Analysis: Transdisciplinary Convergence

ERIC Educational Resources Information Center

Jaipal-Jamani, Kamini

2014-01-01

Research studies using discourse analysis approaches make claims about phenomena or issues based on interpretation of written or spoken text, which includes images and gestures. How are findings/interpretations from discourse analysis validated? This paper proposes transdisciplinary convergence as a way to validate discourse analysis approaches to…

Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

PubMed

Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

2012-09-01

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

Blood transfusion practice in the UK and Ireland: a survey of palliative care physicians.

PubMed

Neoh, Karen; Stanworth, Simon; Bennett, Michael I

2018-03-23

Red cell (blood) transfusions are used in palliative care to manage patients with symptomatic anaemia or when patients have lost blood. We aimed to understand current blood transfusion practice among palliative medicine doctors and compare this with National Institute for Health and Care Excellence (NICE) guidance. NICE guidance advocates more restrictive transfusion practice but is based on clinical trials in non-palliative care contexts; the extent to which these findings should be applied to palliative care remains unclear. Four clinical vignettes of common clinical palliative care scenarios were developed. Members of the Association for Palliative Medicine were invited to complete the survey. Results were compared with acceptable responses based on current NICE recommendations and analysed to determine the influence of respondents' gender, experience or work setting. 27% of 1070 members responded. Overall, ideal or acceptable responses were selected by less than half of doctors to all four vignettes. Doctors were more liberal in prescribing blood transfusions than NICE guidance would advocate. Senior doctors were less likely to choose an acceptable response than junior colleagues. Palliative care practice is varied and not consistent with a restrictive blood transfusion policy. More recently trained doctors follow less liberal practices than senior colleagues. More direct evidence of benefits and harms of blood transfusion is needed in palliative care to inform practice. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Palliative Care-Albania.

PubMed

Rama, Rudina; Çarçani, Valbona; Prifti, Fatmir; Huta, Kristo; Xhixha, Ali; Connor, Stephen R

2018-02-01

Sixty percent of cancer patients are diagnosed with advanced stages of disease and those diagnosed in early stages face challenges to receive adequate treatment. Palliative care has had significant developments in recent years in Albania because of a close partnership with the Ministry of Health, local nonprofit organizations, and the Open Society Foundation Albania. In 2011, a five-year action plan for palliative care as one of four parts of the National Cancer Control Plan was approved. At the end of 2014, the first palliative care law was approved by Parliament. Palliative care by-laws, documents, standards, clinical protocols, and guidelines for adults and children have been developed. Training and education are being provided to primary care professionals. Curricula on palliative care have been developed for the faculty of medicine, nursing high schools, and social work. About 80% of essential medications used in palliative care are available in Albania, 50% of these are paid for and have some access restrictions, and meanwhile the opiophobia still remains an enormous barrier. In the last three years, significant progress has been made in service provision. From only one public palliative care service in 2013, there are now eight palliative care services in eight of the 11 regional hospitals. By the end of 2016, it is expected that palliative care services will be available in all regional hospitals in the country. Copyright © 2017. Published by Elsevier Inc.

Current state of psychiatric involvement on palliative care consult services: results of a national survey.

PubMed

Patterson, Kevin R; Croom, Andrea R; Teverovsky, Esther G; Arnold, Robert

2014-06-01

Palliative care consult services have emerged as an excellent resource for physicians seeking help with patients' symptoms. Symptoms include those of a psychiatric nature (e.g., depression, anxiety, delirium); however, little information is known about whether palliative care services include psychiatric input as part of multidisciplinary teams. To explore 1) the current level of collaboration between psychiatrists and palliative care consult services across the U.S. and 2) the factors that support or restrict such involvement. A national survey was developed and distributed electronically to program directors identified in the National Palliative Care Registry maintained by the Center to Advance Palliative Care. Analyses examined trends in psychiatry involvement with hospital-based palliative care teams. The survey had a 59% response rate, with final analyses including surveys completed by 260 palliative care program directors (67% inclusion rate from total respondents). Seventy-two percent of respondents reported some form of involvement with a psychiatrist on their palliative care service, with only 10% of those identifying a psychiatrist as a full- or part-time member of the team. Most respondents reported that they would like psychiatrists to be more involved with the palliative care services (71%). Secondary analyses of qualitative responses identified common impediments to increased psychiatry involvement, which included financial constraints, provider interest, and perceived disciplinary disconnect. There are shared objectives between psychiatry and palliative care; however, currently, co-involvement on treatment teams is quite limited. Future research is needed to identify ways to facilitate the interface of palliative care and psychiatry. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Palliative care and neurology

PubMed Central

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

2014-01-01

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

Multidisciplinary, Interdisciplinary, and Transdisciplinary Collaboration: Implications for Vocational Psychology

ERIC Educational Resources Information Center

Collin, Audrey

2009-01-01

The literature on interdisciplinarity identifies several forms of collaboration: multidisciplinary, transdisciplinary, and interdisciplinary (as bridge building or integration). To assist vocational psychology translate its interdisciplinary discourse into action, this paper uses that literature to identify the benefits, challenges and conditions…

Palliative Care in Kazakhstan.

PubMed

Kunirova, Gulnara; Shakenova, Ainur

2018-02-01

In Kazakhstan, like most ex-Soviet Union countries palliative care began in the late 1990s with the opening of the Almaty Hospice in 1999. Since that time, several palliative care services have opened in urban centers, but there is little coverage in rural areas. Palliative care has grown because of the collaborative work of Parliament leaders, Ministry of Health, local governments officials, Public Health Higher School, National Center for Health Development, academic medical institutions, oncology and palliative care experts, NGOs, Soros Foundation Kazakhstan, and international experts. A National Palliative Care Strategy provides the legislative framework that mandates the components of palliative that must be available at no cost for patients living with cancer. Palliative care courses are provided in several of the medical universities and nursing schools with practical training in local hospices who also offer seminars each year to practicing health care professionals. There is no "palliative care" or "palliative medicine" specialty in the national classifier of specialties. There are a number of palliative care specialists who participated in various training courses outside Kazakhstan. Oral morphine is not registered or available in the country, and patients must depend on injectable opioids or patches. Going forward, additional policies, increased public awareness, education of health care professionals, access to oral opioids, and more inpatient, home care, and day care services are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care Development in Mongolia.

PubMed

Davaasuren, Odontuya; Ferris, Frank D

2018-02-01

Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.

Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

PubMed

Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine

2017-07-02

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

Promoting palliative care worldwide through international nursing education.

PubMed

Malloy, Pam; Paice, Judith; Coyle, Nessa; Coyne, Patrick; Smith, Thomas; Ferrell, Betty

2014-10-01

Many challenges exist when providing international education to those who care for people at the end of life. Though issues related to culture and language may vary, the one commonality that crosses all nations is that its people die. In general, societies seek to provide the best care they are trained to give. Many have few resources to provide this care well. Traditions of the past influence norms and dictate policies and procedures of the present. Since its inception in 2000, the End-of-Life Nursing Education Consortium Project has provided palliative care education to nurses and other members of the interdisciplinary team in six of the seven continents. This article describes the efforts of this project to improve education around the globe, with the goal of providing excellent, compassionate palliative care, irrespective of location, financial status, political views, religion, race, and/or ethnicity. © The Author(s) 2014.

Perceived discontinuities and continuities in transdisciplinary scientific working groups.

PubMed

Crowston, Kevin; Specht, Alison; Hoover, Carol; Chudoba, Katherine M; Watson-Manheim, Mary Beth

2015-11-15

We examine the DataONE (Data Observation Network for Earth) project, a transdisciplinary organization tasked with creating a cyberinfrastructure platform to ensure preservation of and access to environmental science and biological science data. Its objective was a difficult one to achieve, requiring innovative solutions. The DataONE project used a working group structure to organize its members. We use organizational discontinuity theory as our lens to understand the factors associated with success in such projects. Based on quantitative and qualitative data collected from DataONE members, we offer recommendations for the use of working groups in transdisciplinary synthesis. Recommendations include welcome diverse opinions and world views, establish shared communication practices, schedule periodic synchronous face-to-face meetings, and ensure the active participation of bridge builders or knowledge brokers such as librarians who know how to ask questions about disciplines not their own. Copyright © 2015 Elsevier B.V. All rights reserved.

A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices.

PubMed

Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis

2017-04-01

Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.

Palliative Care in Moldova.

PubMed

Gherman, Liliana; Pogonet, Vadim; Soltan, Viorel; Isac, Valerian

2018-02-01

The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Palliative care development in Moldova registered real progress in spite of frequent political changes at governmental levels and difficulties to ensure the continuity of the development process during the last 10 years. However, the unmet need for palliative care for patients with life-limiting illnesses from different disease and age groups remains high. Further effort is needed to increase the availability and access to opioid analgesics and other essential palliative care medications. Government commitment and support, together with adequate funding, trained and educated health care professionals, and easy access to and availability of medicines, are essential to ensure the successful implementation of palliative care services nationwide, and to deliver the most appropriate qualitative palliative care for patients. To speed up palliative care development, a national strategy on palliative care development should be considered. The authors took part and continue to be involved in different ways in palliative care development in the country. Copyright © 2017. Published by Elsevier Inc.

Muslim physicians and palliative care: attitudes towards the use of palliative sedation.

PubMed

Muishout, George; van Laarhoven, Hanneke W M; Wiegers, Gerard; Popp-Baier, Ulrike

2018-05-08

Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms. To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms. Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA). Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation. Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants. Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.

Effectiveness of "palliative care information booklet" in enhancing nurses' knowledge.

PubMed

David, Anita; Banerjee, Sonali

2010-09-01

Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care. In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge. Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest - posttest, pre - experimental design. Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual) and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically. Microsoft Excel and Statistical Package for Social Science package. The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the nurses. The information booklet was effective in enriching the knowledge of nurses on palliative care. Enhancing

Palliative wound care management strategies for palliative patients and their circles of care.

PubMed

Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia

2015-03-01

To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.

Academic Institutions and One Health: Building Capacity for Transdisciplinary Research Approaches to Address Complex Health Issues at the Animal-Human-Ecosystem Interface.

PubMed

Allen-Scott, Lisa K; Buntain, Bonnie; Hatfield, Jennifer M; Meisser, Andrea; Thomas, Christopher James

2015-07-01

To improve health at the human, animal, and ecosystem interface, defined as One Health, training of researchers must transcend individual disciplines to develop a new process of collaboration. The transdisciplinary research approach integrates frameworks and methodologies beyond academic disciplines and includes involvement of and input from policy makers and members of the community. The authors argue that there should be a significant shift in academic institutions' research capacity to achieve the added value of a transdisciplinary approach for addressing One Health problems. This Perspective is a call to action for academic institutions to provide the foundations for this salient shift. The authors begin by describing the transdisciplinary approach, propose methods for building transdisciplinary research capacity, and highlight three value propositions that support the case. Examples are provided to illustrate how the transdisciplinary approach to research adds value through improved sustainability of impact, increased cost-effectiveness, and enhanced abilities to mitigate potentially harmful unintended consequences. The authors conclude with three key recommendations for academic institutions: (1) a focus on creating enabling environments for One Health and transdisciplinary research, (2) the development of novel funding structures for transdisciplinary research, and (3) training of "transmitters" using real-world-oriented educational programs that break down research silos through collaboration across disciplines.

What is palliative care?

MedlinePlus

Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...

Palliative sedation for intolerable suffering.

PubMed

Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2014-07-01

The purpose of this review is to provide an update on palliative sedation in palliative and end-of-life care. Palliative sedation is the medical procedure used to deal with refractory symptoms in advanced cancer patients when all other specific approaches have failed. Palliative sedation, in the strictest sense of the term, is a proportionate (proportionate palliative sedation, PPS) and intrinsically variable procedure used on an individual basis to relieve refractory symptoms in terminally ill patients, without the intention of hastening death. Completely separate from any other end-of-life decision and not intended to hasten death, palliative sedation has been shown not to have a detrimental impact on survival. To maintain palliative sedation as a legitimate clinical procedure from any ethical or clinical point of view, it must be limited to the restricted area for which it was conceived, that is, relief from refractory suffering as deemed necessary by a patient and by an experienced palliative care team. In this way, there is no risk of associating palliative sedation with other end-of-life decisions. Close collaboration is needed between oncologists and palliative care physicians for this clinical procedure.

[Palliative sedation].

PubMed

Verhagen, E H; Hesselmann, G M; Besse, T C; de Graeff, A

2005-02-26

Palliative sedation is the intentional lowering of the level of consciousness ofa patient in the last phase of life by means of the administration of sedatives. The objective of palliative sedation is to relieve severe physical or psychological suffering that is otherwise untreatable. Sedation is used in 12% of all patients dying in the Netherlands. Refractory delirium, dyspnoea or pain are the most common indications. If deep palliative sedation is used, the estimated life expectancy should be a few days to at most one week. Midazolam is used most often for continuous sedation, usually by subcutaneous infusion; if the response is insufficient, a combination of midazolam with levomepromazine or phenobarbital or monotreatment with propofol may be used. If continuous infusion is not desired or feasible, intermittent administration of midazolam, diazepam, lorazepam or chlorpromazine may be considered. Provided that it is used under the right circumstances, palliative sedation does not shorten life.

"What is Palliative Care?"

PubMed

Kozlov, Elissa; Carpenter, Brian D

2017-04-01

Americans rely on the Internet for health information, and people are likely to turn to online resources to learn about palliative care as well. The purpose of this study was to analyze online palliative care information pages to evaluate the breadth of their content. We also compared how frequently basic facts about palliative care appeared on the Web pages to expert rankings of the importance of those facts to understanding palliative care. Twenty-six pages were identified. Two researchers independently coded each page for content. Palliative care professionals (n = 20) rated the importance of content domains for comparison with content frequency in the Web pages. We identified 22 recurring broad concepts about palliative care. Each information page included, on average, 9.2 of these broad concepts (standard deviation [SD] = 3.36, range = 5-15). Similarly, each broad concept was present in an average of 45% of the Web pages (SD = 30.4%, range = 8%-96%). Significant discrepancies emerged between expert ratings of the importance of the broad concepts and the frequency of their appearance in the Web pages ( r τ = .25, P > .05). This study demonstrates that palliative care information pages available online vary considerably in their content coverage. Furthermore, information that palliative care professionals rate as important for consumers to know is not always included in Web pages. We developed guidelines for information pages for the purpose of educating consumers in a consistent way about palliative care.

Palliative Care in Heart Failure.

PubMed

Sood, Abhinav; Dobbie, Krista; Wilson Tang, W H

2018-04-19

This review illustrates the dynamic role of palliative care in heart failure management and encapsulates the commonly utilized pharmacologic and non-pharmacologic therapeutic strategies for symptom palliation in heart failure. In addition, we provide our experience regarding patient care issues common to the domain of heart failure and palliative medicine which are commonly encountered by heart failure teams. Addition of palliative care to conventional heart failure management plan results in improvement in quality of life, anxiety, depression, and spiritual well-being among patients. Palliative care should not be confused with hospice care. Palliative care teams should be involved early in the care of heart failure patients with the aims of improving symptom palliation, discussing goals of care and improving quality of life without compromising utilization of evidence-based heart failure therapies. A consensus on the appropriate timing of involvement and evidence for many symptom palliation therapies is still emerging.

Facilitating Transdisciplinary Sustainable Development Research Teams through Online Collaboration

ERIC Educational Resources Information Center

Dale, Ann; Newman, Lenore; Ling, Chris

2010-01-01

Purpose: The purpose of this paper is to discuss the potential of online communication technologies to facilitate university-led transdisciplinary sustainable development research and lower the ecological footprints of such research projects. A series of case studies is to be explored. Design/methodology/approach: A one year project is conducted…

Experiences of Early Transdisciplinary Teams in Pediatric Community Rehabilitation

ERIC Educational Resources Information Center

Aubin, Tamie; Mortenson, Patricia

2015-01-01

Although a transdisciplinary approach (TA) is considered best practice for children aged 0-3 years, there is limited information for professionals on how to successfully implement TA services. Using qualitative inquiry, in-depth interviews were conducted to explore the experiences of 6 service providers and managers who took part in early…

Transdisciplinary Pedagogical Templates and Their Potential for Adaptive Reuse

ERIC Educational Resources Information Center

Dobozy, Eva; Dalziel, James

2016-01-01

This article explores the use and usefulness of carefully designed transdisciplinary pedagogical templates (TPTs) aligned to different learning theories. The TPTs are based on the Learning Design Framework outlined in the Larnaca Declaration (Dalziel et al. in this collection). The generation of pedagogical plans or templates is not new. However,…

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation.

PubMed

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.

[General practitioner and palliative sedation].

PubMed

Schweitzer, Bart

2014-01-01

Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.

Providing pediatric palliative care: PACT in action.

PubMed

Duncan, Janet; Spengler, Emily; Wolfe, Joanne

2007-01-01

High-quality pediatric palliative care should be an expected standard in the United States, especially since the publication of the numerous position statements such as "Precepts of Palliative Care for Children and Adolescents and Their Families," a joint statement created by the Association of Pediatric Oncology Nurses, the National Association of Neonatal Nurses, and the Society of Pediatric Nurses. Although many barriers still exist, dedicated individuals and teams strive to promote models of excellence and improve care for children with life-threatening conditions and their families. The Pediatric Advanced Care Team, a joint project of Dana-Farber Cancer Institute and Children's Hospital, Boston, is one such interdisciplinary pediatric palliative care consultation service. Founded in 1997, we have grown and learned from formal study and our extensive clinical work with families, children, and our colleagues. This article describes our journey as an interdisciplinary team forging a new service within two renowned medical institutions in which historically the primary emphasis of care has been on cure and innovation. Although these values remain, our work has resulted in an increased acceptance of balancing treatment of the underlying disease or condition along with treatment of the physical, psychosocial, and spiritual needs of the child and family through life or death. One of our goals is to help promote a balance of hope for cure with hope for comfort, dignity, and integrity for every child and family.

Rural Palliative Care in North India: Rapid Evaluation of a Program Using a Realist Mixed Method Approach.

PubMed

Munday, Daniel F; Haraldsdottir, Erna; Manak, Manju; Thyle, Ann; Ratcliff, Cathy M

2018-01-01

Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK. This study aims to evaluate the EHA palliative care project. Rapid evaluation method using a mixed method realist approach at the five project hospital sites. An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site. Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC). Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services. Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.

Engaging Axiology: Enabling MeaningfulTransdisciplinary Collaboration in Adapted Physical Activity.

PubMed

Peers, Danielle

2018-07-01

In this article, I explore the concept of axiology in the context of adapted physical activity research and analyze its connection to the more commonly discussed paradigmatic assumptions of epistemology and ontology. Following methodological scholars, I argue for an acknowledgment of the pivotal role that axiology already plays in adapted physical activity research and for the potential interdisciplinary and transdisciplinary opportunities that could be enabled by engaging with axiology in more explicit ways. I discuss a number of potential axiological gaps between the field of adapted physical activity and disability communities, arguing that such differences may undermine attempts at doing meaningful transdisciplinary research with such communities. I offer strategies for bridging these axiological gaps, encouraging us to work together in axiologically reflexive ways in order to increase meaningful opportunities for more people with disabilities to be engaged in the movement-based activities and communities of their choice.

Uncovering Transdisciplinary Team Project Outcomes through Ripple Effect Mapping

ERIC Educational Resources Information Center

Daniels, Catherine H.; Chalker-Scott, Linda; Martini, Nicole

2016-01-01

The Garden Team at Washington State University is a transdisciplinary, geographically dispersed group of faculty and staff. As with many such teams, member retention requires effort, as busy individuals may not see the overall benefits of active team membership. Ripple effect mapping is a strategy that can illustrate the tangible and often…

Palliative care in Thailand.

PubMed

Krongyuth, Panit; Campbell, Cathy L; Silpasuwan, Pimpan

2014-12-01

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues.

Pediatric Palliative Care at a Glance

MedlinePlus

® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

PubMed Central

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

Palliative Care Development in Kyrgyzstan.

PubMed

Mukambetov, Aibek; Sabyrbekova, Taalaigul; Asanalieva, Lola; Sadykov, Ilim; Connor, Stephen R

2018-02-01

Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program in Osh Cancer Center and was supported by a small group of nurses and one physician from Scotland. In 2010, the Soros Foundation-Kyrgyzstan and the Open Society Foundation's International Palliative Care Initiative began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation. A Ministry of Health working group was established to lead this initiative, and technical assistance was provided by an international palliative care consultant. Work began with a national needs assessment, which identified the existing barriers to the provision of quality palliative care, and recommendations were made to the working group to address these challenges. Today, palliative care is included in many national health care policies and laws, a national palliative care association has been established, undergraduate medical and nursing education include elements of palliative care, oral morphine and fentanyl patches are now available in parts of the country, inpatient services exist in the National Cancer Center in Osh and Bishkek, two tuberculosis hospitals with multidrug resistant/extensively drug resistant, and home care services in Osh and Bishkek. Public information campaigns and advocacy activities continue to increase public awareness about palliative care and press government action. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care Leadership Centers Are Key To The Diffusion Of Palliative Care Innovation.

PubMed

Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E

2018-02-01

Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.

The International Association for Hospice and Palliative Care: Advancing Hospice and Palliative Care Worldwide.

PubMed

De Lima, Liliana; Radbruch, Lukas

2018-02-01

The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible. IAHPC focuses on the advancement of four areas of palliative care: education, access to medicines, health policies, and service implementation. IAHPC works on three levels: at the grass roots, developing resources, and educational strategies that enable health workers to provide cost-effective palliative care; at the national level, working with government representatives to improve national policies to ensure adequate care and access to medicines; and at the international level, advocating with the UN organizations to ensure that access to palliative care and to essential medicines for palliative care and pain treatment is stipulated and incorporated as an obligation of member states. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer.

PubMed

Rassouli, Maryam; Sajjadi, Moosa

2016-04-01

Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.

Transdisciplinary Learning and Teaching as Answers to Urban Sustainability Challenges

ERIC Educational Resources Information Center

Biberhofer, Petra; Rammel, Christian

2017-01-01

Purpose: This paper aims to explain the relevance of science-society interfaces and their potential for higher education institutions to engage stakeholders in supporting sustainable change in cities, via the transdisciplinary learning and teaching approach of the Regional Centre of Expertise on Education for Sustainable Development Vienna.…

Monitoring At-Risk Infant and Toddler Development: A Transdisciplinary Approach.

ERIC Educational Resources Information Center

Costarides, Anna H.; Shulman, Brian B.; Trimm, R. Franklin; Brady, Nancy R.

1998-01-01

Describes the evolution of a transdisciplinary team for assessing infants and toddlers identified as at-risk for developmental delay. The assessment process is outlined and includes information on instruments used in assessing the cognitive, language, and motor development of infants and toddlers. Obstacles encountered with families and methods…

[Satisfaction of principal caregivers of patients followed-up by palliative care teams].

PubMed

Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S

2016-10-01

To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Palliative Care Processes Embedded in the ICU Workflow May Reserve Palliative Care Teams for Refractory Cases.

PubMed

Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig

2018-01-01

Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.

Developing and Sustaining a Career as a Transdisciplinary Nurse Scientist.

PubMed

Hickey, Kathleen T

2018-01-01

The purpose of this article is to provide an overview of strategies to build and sustain a career as a nurse scientist. This article examines how to integrate technologies and precision approaches into clinical practice, research, and education of the next generation of nursing scholars. This article presents information for shaping a sustainable transdisciplinary career. Programs of research that utilize self-management to improve quality of life are discussed throughout the article. The ongoing National Institute of Nursing Research-funded (R01 grant) iPhone Helping Evaluate Atrial Fibrillation Rhythm through Technology (iHEART) study is the first prospective, randomized controlled trial to evaluate whether electrocardiographic monitoring with the AliveCor™ device in the real-world setting will improve the time to detection and treatment of recurrent atrial fibrillation over a 6-month period as compared to usual cardiac care. Opportunities to sustain a career as a nurse scientist and build programs of transdisciplinary research are identified. These opportunities are focused within the area of research and precision medicine. Nurse scientists have the potential and ability to shape their careers and become essential members of transdisciplinary partnerships. Exposure to clinical research, expert mentorship, and diverse training opportunities in different areas are essential to ensure that contributions to nursing science are visible through publications and presentations as well as through securing grant funding to develop and maintain programs of research. Transcending boundaries and different disciplines, nurses are essential members of many diverse teams. Nurse scientists are strengthening research approaches, clinical care, and communication and improving health outcomes while also building and shaping the next generation of nurse scientists. © 2017 Sigma Theta Tau International.

Toward a Transdisciplinary Model of Evidence-Based Practice

PubMed Central

Satterfield, Jason M; Spring, Bonnie; Brownson, Ross C; Mullen, Edward J; Newhouse, Robin P; Walker, Barbara B; Whitlock, Evelyn P

2009-01-01

Context This article describes the historical context and current developments in evidence-based practice (EBP) for medicine, nursing, psychology, social work, and public health, as well as the evolution of the seminal “three circles” model of evidence-based medicine, highlighting changes in EBP content, processes, and philosophies across disciplines. Methods The core issues and challenges in EBP are identified by comparing and contrasting EBP models across various health disciplines. Then a unified, transdisciplinary EBP model is presented, drawing on the strengths and compensating for the weaknesses of each discipline. Findings Common challenges across disciplines include (1) how “evidence” should be defined and comparatively weighted; (2) how and when the patient's and/or other contextual factors should enter the clinical decision-making process; (3) the definition and role of the “expert”; and (4) what other variables should be considered when selecting an evidence-based practice, such as age, social class, community resources, and local expertise. Conclusions A unified, transdisciplinary EBP model would address historical shortcomings by redefining the contents of each model circle, clarifying the practitioner's expertise and competencies, emphasizing shared decision making, and adding both environmental and organizational contexts. Implications for academia, practice, and policy also are discussed. PMID:19523122

Palliative Care.

PubMed

Swetz, Keith M; Kamal, Arif H

2018-03-06

Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.

Vitamin "G"arden: a qualitative study exploring perception/s of horticultural therapy on a palliative care ward.

PubMed

Masel, Eva Katharina; Trinczek, Helena; Adamidis, Feroniki; Schur, Sophie; Unseld, Matthias; Kitta, Anna; Kirchheiner, Kathrin; Steininger, Birgit; Meixner-Katzmann, Karoline; Watzke, Herbert Hans

2018-06-01

In a palliative care setting, the preservation of quality of life is of particular importance. Horticultural therapy (HT) is reported as an excellent way to improve physical as well as psychological well-being, reduce levels of anxiety and depression, and promote social interaction. The use of horticultural interventions in palliative care has not yet been explored. The aim of this study was to explore the effects of HT in patients and team members on a palliative care ward. This study was based on a qualitative methodology, comprising 20 semistructured interviews with 15 advanced cancer patients participating in HT and with 5 members of the palliative care team. Interviews were analyzed using NVivo 10 software based on thematic analysis. The results revealed the following themes: (1) well-being, (2) variation of clinical routine, (3) creation, and (4) building relationships. Patients experienced positive stimulation through HT, were distracted from daily clinical routines, enjoyed creative work, and were able to build relationships with other patients. HT was also welcomed by the members of the palliative care team. Thirty-six percent of the patients did not meet the inclusion criteria, and 45% could not participate in the second or third HT session. Our study showed that the availability of HT was highly appreciated by the patients as well as by the palliative care team. Nevertheless, the dropout rate was high, and therefore, it might be more feasible to integrate green spaces into palliative care wards.

Validation of quality indicators for the organization of palliative care: a modified RAND Delphi study in seven European countries (the Europall project).

PubMed

Woitha, Kathrin; Van Beek, Karen; Ahmed, Nisar; Jaspers, Birgit; Mollard, Jean M; Ahmedzai, Sam H; Hasselaar, Jeroen; Menten, Johan; Vissers, Kris; Engels, Yvonne

2014-02-01

Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparative manner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliative care settings exists. To develop and validate a set of structure and process indicators for palliative care settings in Europe. A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of 110 quality indicators. In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries. In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: the definition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructure to deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative care services (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safety procedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator). The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure and compare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliative care, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project.

Single-port videoscopic splanchnotomy for palliation of refractory chronic pancreatitis.

PubMed

Kuijpers, Michiel; Klinkenberg, Theo J; Bouma, Wobbe; Beese, Ulrich; DeJongste, Mike J; Mariani, Massimo A

2016-04-01

Interrupting the afferent signals that travel through the splanchnic nerves by multiportal thoracoscopic splanchnotomy can offer effective palliation in chronic pancreatitis. However, obtained results weaken after time, possibly necessitating repeat procedures. Given the palliative nature of this procedure, potential for iatrogenic damage should be kept at a minimum. So, in order to minimize invasiveness while optimizing repeatability, we sought to create an easily reproducible single-access port operative strategy. Four patients suffering from intractable pain due to chronic pancreatitis for >10 years (12.8 ± 5.9) underwent a single-port unilateral R5-R11 splanchnotomy. Postoperative recovery was uneventful. No operative complications were observed. All 4 patients experienced excellent pain relief with a significant improvement of Visual Analogue Scale pain scores (8.8 ± 1.0 preoperatively to 3.0 ± 1.2 postoperatively, P = 0.003). We report the first series of single-port video-assisted thoracoscopic surgical (VATS) splanchnotomy for palliation of intractable pain due to chronic pancreatitis. From this small study, single-port VATS splanchnotomy seems to be a safe and effective alternative to multiportal or open procedures. © The Author 2016. Published by Oxford University Press on behalf of the European Association for Cardio-Thoracic Surgery. All rights reserved.

International recommendations for outpatient palliative care and prehospital palliative emergencies – a prospective questionnaire-based investigation

PubMed Central

2013-01-01

Background To determine the international recommendations and current practices for the treatment and prevention of palliative emergencies. The primary goal of the study was to gather information from experts on their nationally practised concepts. Methods One hundred and fifty self-report surveys were distributed by email to selected leading experts (palliative and emergency medical care) in Europe, North and South America, Africa, Asia, and Australia. An expert in this context was defined as an author of an article that was ranked by three reviewers as relevant to outpatient palliative and emergency medical . Results The total response rate was 61% (n = 92 experts). Survey responses were obtained from 35 different countries. The following standards in the treatment of palliative emergencies were recommended: (1) early integration of “Palliative Care Teams” (PCTs) and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, drug boxes, and “Do not attempt resuscitation” orders and (4) emergency medical training (physicians and paramedics). Conclusions This study detected structurally and nationally differences in outpatient palliative care regarding the treatment of palliative emergencies. Accordingly, these differences should be discussed and adapted to the respective specifications of individual single countries. A single established outpatient palliative emergency medical care concept may be the basis for an overall out-of-hospital palliative care system. PMID:23432905

What is Pediatric Palliative Care?

MedlinePlus

... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...

Family inspiration for my career(s) in transdisciplinary science

USGS Publications Warehouse

Plumlee, Geoffrey S.

2014-01-01

I have been fortunate to spend the last 31 years working for an organization that has allowed me to make multiple career shifts across earth science disciplines and to collaborate with people in fields well beyond the earth sciences. Many inspirational colleagues have guided me along this transdisciplinary science path, but perhaps my biggest source of inspiration has been my family.

Transdisciplinary Teaching for Sustainable Development in a Whole School Project

ERIC Educational Resources Information Center

Nordén, Birgitta

2018-01-01

The study investigates the transdisciplinary teaching of education for sustainable development (ESD) with a global dimension at an upper secondary school in Sweden. The purpose was to analyse and describe variations in how nine teachers in different subject matters experienced collaborative teaching in the context of a whole school educational…

Assessing Institutional Frameworks of Inter- and Transdisciplinary Research and Education

ERIC Educational Resources Information Center

Weiss, Gerhard; Steiner, Regina; Eckmullner, Otto

2011-01-01

This paper presents a concept for analysing the bearing of institutional settings on inter- and transdisciplinary research and education for sustainable development and applies it to a concrete case example. It asks in how far the funding programme requirements and the institutional project arrangements impacted on the research process and project…

Languages and Education in Africa a Comparative and Transdisciplinary Analysis

ERIC Educational Resources Information Center

Brock-Utne, Birgit, Ed.; Skattum, Ingse, Ed.

2009-01-01

The theme of this book cuts across disciplines. Contributors to this volume are specialized in education and especially classroom research as well as in linguistics, most being transdisciplinary themselves. Around 65 sub-Saharan languages figure in this volume as research objects: as means of instruction, in connection with teacher training,…

Tensions between opening up and closing down moments in transdisciplinary water research

NASA Astrophysics Data System (ADS)

Krueger, Tobias; Maynard, Carly; Carr, Gemma; Bruns, Antje; Mueller, Eva; Lane, Stuart

2016-04-01

Research on water is carried out by many disciplines that do not really talk to each other much, despite critical interactions of multiple social and biophysical processes in shaping how much and what kind of water is where, at what time and for whom. What is more, water has meaning to more than those who are scientists. And scientists are not so removed from the things they study as one might commonly believe. All these observations call for a transdisciplinary research agenda that brings together different scientific disciplines with the knowledge that other groups in society hold and that tries to be aware of its own limitations. The transdisciplinary perspective is especially pertinent to the scientific decade 2013-2022 of the International Association of Hydrological Sciences (IAHS) on change in hydrology and society, 'Panta Rhei,' for a balanced conceptualization and study of human-water relations. Transdisciplinarity is inherently about opening up traditional modes of knowledge production; in terms of framing the research problem, the methodology and the knowledge that is considered permissible. This should open up the range of options for management intervention, too. While decisions on how to intervene will inevitably close down the issue periodically, the point here is to leave alternative routes of action open long enough, or reopen them again, so as to counter unsustainable and inequitable path-dependencies and lock-ins. However, opening up efforts are frequently in conflict with factors that work to close down knowledge production. Among those are framings, path-dependencies, vested interests, researchers' positionalities, power, and scale. In this presentation, based on Krueger et al. (2016), we will reflect on the tensions between opening up and closing down moments in transdisciplinary water research and draw important practical lessons. References Krueger, T., Maynard, C.M., Carr, G., Bruns, A., Mueller, E.N. and Lane, S.N. (forthcoming in 2016) A

Caregiver resilience in palliative care: a research protocol.

PubMed

Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria

2016-02-01

To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. This is a multicentre cross-sectional study. We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. © 2015 John Wiley & Sons Ltd.

Grief and Palliative Care: Mutuality

PubMed Central

Moon, Paul J

2013-01-01

Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and palliative care related to end-of-life circumstances. Specifically, the complementarity of grief and palliative care, as well as a controvertible view thereof, will be considered. PMID:25278758

Nurturing transdisciplinary research - lessons from live experiments in prioritising and supporting novel risk science (Invited)

NASA Astrophysics Data System (ADS)

Rees, J.; Armstrong, C.; Barclay, J.; Moores, A.; Whitaker, D.

2013-12-01

The benefits of specialization over the last 150 years have meant that science has evolved within several distinct disciplines, such as physical, social or environmental. These have generated their own cultures, languages, agendas, institutions, measures of success and cohorts of suitably branded scientists. However, we increasingly see that society and the environment are exposed to many complex, interdependent and rapidly changing risks - not only from natural hazards, but also those associated with fast expanding and ageing populations, highly interconnected and interdependent economies, rapid climate change, and increasingly limited resources. Risks derived from such interacting drivers commonly generate non-linear effects or repercussions and future risks may be very different to those of today; significantly, they span many traditional science disciplines. We thus need to have a fresh look at transdisciplinary risk science, bring in novel ideas and new blood. But what are the best practical ways of sowing the seeds and fertilizing such approaches? The presentation describes novel practical steps to achieve this, all related to building and resourcing transdisciplinary research which incorporates natural hazard science within the UK over the last 5 years. These comprise instruments to prioritise science gaps and provide funding for transdisciplinary research by a) Academic research funders - the Research Councils UK (RCUK) Risk Research Network and current research programmes; b) Government and non-governmental research funders - the Living with Environmental Change Initiative, and the UK Flooding and coastal erosion risk management research strategy - and the UK Collaborative for Development Science sponsored Disasters Research Group; and c) Business funding - through integrated risk modelling for the insurance industry. Whilst young, all these initiatives are healthy and seek to build a portfolio of small scale initiatives that will breed success and develop

The Application of a Transdisciplinary Model for Early Intervention Services

ERIC Educational Resources Information Center

King, Gillian; Strachan, Deborah; Tucker, Michelle; Duwyn, Betty; Desserud, Sharon; Shillington, Monique

2009-01-01

This article reviews the literature on the transdisciplinary approach to early intervention services and identifies the essential elements of this approach. A practice model describing the implementation of the approach is then presented, based on the experiences of staff members in a home visiting program for infants that has been in existence…

Concordance in the Assessment of Effectiveness of Palliative Care between Patients and Palliative Care Nurses in Malaysia: A Study with the Palliative Care Outcome Scale

PubMed Central

Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean

2017-01-01

Context: The Palliative Care Outcome Scale (POS) is an easy-to-use assessment tool to evaluate the effectiveness of palliative care. There is no published literature on the use of POS as an assessment tool in Malaysia. Aim: To define the concordance in the assessment of quality of life between patients with advanced cancers and their palliative care nurses using a Malay version of the POS. Settings and Design: This study was conducted in the palliative care unit of the Hospital Tuanku Ja'afar Seremban, Malaysia, from February 2014 to June 2014. Subjects and Methods: We adapted and validated the English version of the 3-day recall POS into Malay and used it to define the concordance in the assessment of quality of life between patients and palliative care nurses. Forty patients with advanced stage cancers and forty palliative care nurses completed the Malay POS questionnaire. Statistical Analysis Used: The kappa statistical test was used to assess the agreement between patients and their palliative care nurses. Results: Slight to fair concordance was found in all items, except for one item (family anxiety) where there was no agreement. Conclusions: The Malay version of the POS was well accepted and reliable as an assessment tool for evaluation of the effectiveness of palliative care in Malaysia. Slight to fair concordance was shown between the patients and their palliative care nurses, suggesting the needs for more training of the nurses. PMID:28216862

International palliative care: Middle East experience as a model for global palliative care.

PubMed

Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael

2015-05-01

Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. Copyright © 2015 Elsevier Inc. All rights reserved.

Palliative care content on cancer center websites.

PubMed

Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

2018-03-01

Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

Increasing sustainable stormwater management adaption through transdisciplinary research

NASA Astrophysics Data System (ADS)

Wingfield, Thea; Potter, Karen; Jones, Gareth; Spees, Jack; Macdonald, Neil

2016-04-01

The Ribble Rivers Trust leads a partnership of land and water management organisations that use a holistic approach to water management in the Ribble catchment. They are interested in incorporating sustainable stormwater systems, into their program of delivery with a view to ensuring that their activities to improve the environments and habitats of the catchment also contribute to reducing flood risk. A methodology, to locate interventions that would slow water within the catchment are identified; however partner buy in, institutional caution and economic barriers are felt to be hindering delivery. In response a transdisciplinary research project in which both the academics of the University of Liverpool and the practitioners of The Ribble Rivers Trust are active investigators has been established. The project aims to increase the uptake of sustainable stormwater management techniques through the analysis of the institutional, experiential and governance processes and their interactions with the physical hydrological processes governing stormwater systems. Research that is transdisciplinary must integrate academic knowledge with practitioner, local understanding and practice. Furthermore methodologies belonging to different academic fields must be blended together to collect, analyse and interpret data in order to examine complex problems through different disciplinary lenses in an integrated way. This approach has been developed in response to the complex relationships of cause and effect of contemporary inter-related economic, environmental and societal challenges. There have been a number of challenges to overcome as transdisciplinary researchers, the first and most important was to understand the different research philosophies and theoretical assumptions behind various natural science and social science research methods. Without this understanding research methodologies could be flawed and would not be effectively integrated and the data would not be

The Worldwide Hospice Palliative Care Alliance.

PubMed

Connor, Stephen R; Gwyther, Elizabeth

2018-02-01

The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was established in 2008 following a series of international gatherings that highlighted the important need for palliative care to be included in global policy and health planning. The vision of the WHPCA is a world with universal access to hospice and palliative care. Its mission is to foster, promote and influence the delivery of affordable, quality palliative care. This article describes the evolution of the WHPCA and what it has been able to accomplish in the eight years since its formation. These accomplishments include effective advocacy with United Nations bodies, acceptance as a non-governmental organization in official relations with the World Health Organization and the UN Economic and Social Council, publication of many position papers on critical aspects of palliative care, publication of the Global Atlas of Palliative Care at the End of Life, development of toolkits for palliative care development, publication of the international edition of ehospice, and management of World Hospice and Palliative Care Day each year. Some of the many challenges to the growth and development of palliative care globally are described along with future plans. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion.

PubMed

Juth, Niklas; Lindblad, Anna; Lynöe, Niels; Sjöstrand, Manne; Helgesson, Gert

2010-09-13

The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.

[Palliative sedation at a university palliative care unit--a descriptive analysis].

PubMed

Hopprich, A; Günther, L D; Laufenberg-Feldmann, R; Reinholz, U; Weber, M

2016-04-01

Palliative sedation (pS) is indicated in the presence of end-stage disease with treatment-refractory symptoms not tolerable for the patient. We investigated the practice of pS at a university palliative care unit. Before starting pS the following data were documented: indication and decision making, type of sedation, life expectancy evaluated by the physician using the palliative prognostic index. Over the time of pS communication skills, depth of sedation, relief in symptoms, substitution of fluid and nutrition and used medications were collected. During evaluation time 99 patients died. 34 patients received pS (34 %). All patients suffered from cancer. Indications for palliative sedation were: terminal restlessness (56 %), dyspnea (39 %), pain (32 %), psychological distress (15 %), agitated delir (9 %), vomiting (3 %) and bleeding (3 %) (multiple nominations possible). In 31 cases (91 %) nurses were included for decision making. In 33 cases continuous sedation were initiated immediately (median duration 27.5 hours). The most applied medication was midazolam (94 %), sometimes combined with neuroleptics (44 %) and propofol (15 %). 91 % of the patients additionally received opioids. Artificial fluid was substituted in two cases. Palliative sedation started in the median 27.5 hours before death. The final physician assessment revealed complete symptom relief in 12 patients (35 %), very strong symptom relief in 20 patients (59 %) and moderate symptom relief in 2 patients (6 %). pS was successfully used as last resort for relief of treatment-refractory symptoms in one third of decedents at the investigated palliative care unit. © Georg Thieme Verlag KG Stuttgart · New York.

A transdisciplinary approach for supporting the integration of ecosystem services into land and water management

NASA Astrophysics Data System (ADS)

Fatt Siew, Tuck; Döll, Petra

2015-04-01

Transdisciplinary approaches are useful for supporting integrated land and water management. However, the implementation of the approach in practice to facilitate the co-production of useable socio-hydrological (and -ecological) knowledge among scientists and stakeholders is challenging. It requires appropriate methods to bring individuals with diverse interests and needs together and to integrate their knowledge for generating shared perspectives/understanding, identifying common goals, and developing actionable management strategies. The approach and the methods need, particularly, to be adapted to the local political and socio-cultural conditions. To demonstrate how knowledge co-production and integration can be done in practice, we present a transdisciplinary approach which has been implemented and adapted for supporting land and water management that takes ecosystem services into account in an arid region in northwestern China. Our approach comprises three steps: (1) stakeholder analysis and interdisciplinary knowledge integration, (2) elicitation of perspectives of scientists and stakeholders, scenario development, and identification of management strategies, and (3) evaluation of knowledge integration and social learning. Our adapted approach has enabled interdisciplinary and cross-sectoral communication among scientists and stakeholders. Furthermore, the application of a combination of participatory methods, including actor modeling, Bayesian Network modeling, and participatory scenario development, has contributed to the integration of system, target, and transformation knowledge of involved stakeholders. The realization of identified management strategies is unknown because other important and representative decision makers have not been involved in the transdisciplinary research process. The contribution of our transdisciplinary approach to social learning still needs to be assessed.

Implementation of a Transdisciplinary Team for the Transition Support of Medically and Socially Complex Youth.

PubMed

Ciccarelli, Mary R; Gladstone, Erin B; Armstrong Richardson, Eprise A J

2015-01-01

This article reports the ongoing work of a statewide transition support program which serves youth ages 11 to 22 with medically complex conditions and socially complex lives. Seven years of transition support services have led to program evolution demonstrated via a descriptive summary of the patients along with both families' and primary care providers' responses to satisfaction surveys. An illustrative case is used to highlight the types of expertise needed in specialized transition service delivery for patients with significant complexity. The team's analysis of their transdisciplinary work processes further explains the work. Nearly three hundred youth with complex needs are served yearly. Families and primary care providers express high satisfaction with the support of the services. The case example shows the broad array of transition-specific services engaged beyond the usual skill set of pediatric or adult care coordination teams. Transdisciplinary team uses skills in collaboration, support, learning, and compromise within a trusting and respectful environment. They describe the shared responsibility and continuous learning of the whole team. Youth with complex medical conditions and complex social situations are at higher risk for problems during transition. Serving this population with a transdisciplinary model is time consuming and requires advanced expertise but, with those investments, we can meet the expectations of the youth, their families and primary care providers. Successful transdisciplinary teamwork requires sustained and focused investment. Further work is needed to describe the complexity of this service delivery along with distinct transition outcomes and costs comparisons. Copyright © 2015 Elsevier Inc. All rights reserved.

Palliative sedation in nursing anesthesia.

PubMed

Wolf, Michael T

2013-04-01

Palliative sedation is a technique of providing a sedative for end-of-life care to patients with intractable pain. The literature discusses the techniques and use of palliative sedation. Numerous articles have been written regarding the issues surrounding its use, but no literature has discussed the prescription or administration of palliative sedation by a nurse anesthetist. By understanding the concept and ethics involved in its use and providing nursing care that is theory based, the author argues that the involvement of nursing anesthesia is appropriate and within the scope of practice. Few other healthcare disciplines can provide the patient care and empirical knowledge that is imperative in the care of the dying patient. This article discusses the concept and ethics of palliative sedation and presents a case of providing palliative sedation to a terminally ill patient by an experienced nurse anesthetist. Palliative sedation should be understood, embraced, and utilized as an area of expertise suited for nursing anesthesia.

Barriers to Access to Palliative Care

PubMed Central

Hawley, Pippa

2017-01-01

Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439

Transdisciplinary Collaborations for Sustainability Education: Institutional and Intragroup Challenges and Opportunities

ERIC Educational Resources Information Center

Evans, Tina Lynn

2015-01-01

This article takes as its point of departure the many converging crises of sustainability and the responsibility of higher education institutions and faculty members to participate in mitigating these crises to any extent possible. The author characterizes sustainability education as transdisciplinary praxis, explores the institutional and…

Top 10 things palliative care clinicians wished everyone knew about palliative care.

PubMed

Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C

2013-08-01

With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. Copyright © 2013 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.

Bridging basic and clinical science with policy studies: The Partners with Transdisciplinary Tobacco Use Research Centers experience.

PubMed

Kobus, Kimberly; Mermelstein, Robin

2009-05-01

The Partners with Transdisciplinary Tobacco Use Research Centers (TTURCs) initiative was a transdisciplinary team-building program, funded by the Robert Wood Johnson Foundation, to expand the policy research capacity of the TTURCs. EXPANSION INTO POLICY RESEARCh: Policy research activities at the TTURCs fell into four broad domains: (a) health services research, (b) examination of the business case for cessation treatment and funding, (c) collaborative teams with key stakeholders, and (d) direct assessment of smoking-related policies. Examples of each domain are presented. Goals of the initiative included efforts to foster collaborative, transdisciplinary research, to bring new investigators into the field, to develop programs of policy research, to answer next-step translational questions, and to enhance awareness of policy relevance. Success at meeting each of these goals is discussed. We offer recommendations for incorporating programs of policy research into full-spectrum transdisciplinary research initiatives, including the roles of research teams, senior researchers, infrastructure, stakeholders, and communications activities. The TTURC Partners initiative represented a first-generation effort to fill the gap between scientific discovery and research translation through expansion into policy studies. While all aspects of the effort were not equally successful, the effort demonstrated that it is possible to develop successful collaborations that extend more basic and applied research into studies that examine their policy and practice implications.

Enabling University Educators to Equip Students with Inter- and Transdisciplinary Competencies

ERIC Educational Resources Information Center

Di Giulio, Antonietta; Defila, Rico

2017-01-01

Purpose: Inter- and transdisciplinarity are core concepts in almost all education for sustainable development (ESD) competence frameworks and curricula. To equip students with inter- and transdisciplinary competencies is highly demanding for educators. Educators must not only know how to teach students such competencies, but need to be experienced…

Sustainable malaria control: transdisciplinary approaches for translational applications

PubMed Central

2012-01-01

With the adoption of the Global Malaria Action Plan, several countries are moving from malaria control towards elimination and eradication. However, the sustainability of some of the approaches taken may be questionable. Here, an overview of malaria control and elimination strategies is provided and the sustainability of each in context of vector- and parasite control is assessed. From this, it can be concluded that transdisciplinary approaches are essential for sustained malaria control and elimination in malaria-endemic communities. PMID:23268712

Frequently Asked Questions (Palliative Care: Conversations Matter)

MedlinePlus

... NINR Home About Email Search En Español Palliative Care - Top Menu Show — Palliative Care - Top Menu Hide — ... and Frequently Asked Questions What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ...

Palliative Care in Cancer

MedlinePlus

... palliative care team works in conjunction with your oncology care team to manage your care and maintain ... among family member, caregivers, and members of the oncology care team. When is palliative care used in ...

Palliative care - managing pain

MedlinePlus

... this page: //medlineplus.gov/ency/patientinstructions/000532.htm Palliative care - managing pain To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

Strategies for transdisciplinary research on peri-urban groundwater management in the Ganges delta

NASA Astrophysics Data System (ADS)

Hermans, Leon; Thissen, Wil; Gomes, Sharlene; Banerjee, Poulomi; Narain, Vishal; Salehin, Mashfiqus; Hasan, Rezaul; Barua, Anamika; Alam Khan, Shah; Bhattacharya, Samir; Kempers, Remi; Banerjee, Parthasarathi; Hossain, Zakir; Majumdar, Binoy; Hossain, Riad

2016-04-01

Transdisciplinary science transcends disciplinary boundaries. The reasons to engage in transdisciplinary science are many and include the desire to nurture a more direct relationship between science and society, as well as the desire to explain phenomena that cannot be explained by any of the existing disciplinary bodies of knowledge in isolation. Both reasons also reinforce each other, as reality often features a level of complexity that demands and inspires the combination of scientific knowledge from various disciplines. The challenge in transdisciplinary science, however, is not so much to cross disciplinary boundaries, but to ensure an effective connection between disciplines. This contribution reports on the strategy used in a transdisciplinary research project to address groundwater management in peri-urban areas in the Ganges delta. Groundwater management in peri-urban areas in rapidly urbanizing deltas is affected by diverse forces such as rapid population growth, increased economic activity and changing livelihood patterns, and other forces which result in a growing pressure on available groundwater resources. Understanding the intervention possibilities for a more sustainable groundwater management in these peri-urban areas requires an understanding of the dynamic interplay between various sub-systems, such as the physical groundwater system, the water using activities in households and livelihoods, and the institutional system of formal and informal rules that are used by various parties to access groundwater resources and to distribute the associated societal and economic costs and benefits. The ambition in the reported project is to contribute both new scientific knowledge, as well as build capacity with peri-urban stakeholders to improve the sustainability and equitability of local groundwater management. This is done by combining science and development activities, led by different organizations. The scientific component further consists of three

Sustainability Transdisciplinary Education Model: Interface of Arts, Science, and Community (STEM)

ERIC Educational Resources Information Center

Clark, Barbara; Button, Charles

2011-01-01

Purpose: The purpose of this paper is to describe the components of a sustainability transdisciplinary education model (STEM), a contemporary approach linking art, science, and community, that were developed to provide university and K-12 students, and society at large shared learning opportunities. The goals and application of the STEM curriculum…

Eliminating Health Disparities Through Transdisciplinary Research, Cross-Agency Collaboration, and Public Participation

PubMed Central

Spengler, Robert F.; Wagner, Robin M.; Melanson, Cindi; Skillen, Elizabeth L.; Mays, Robert A.; Heurtin-Roberts, Suzanne; Long, Judith A.

2009-01-01

Despite efforts to the contrary, disparities in health and health care persist in the United States. To solve this problem, federal agencies representing different disciplines and perspectives are collaborating on a variety of transdisciplinary research initiatives. The most recent of these initiatives was launched in 2006 when the Centers for Disease Control and Prevention's Office of Public Health Research and the Department of Health and Human Services’ Office of Minority Health brought together federal partners representing a variety of disciplines to form the Federal Collaboration on Health Disparities Research (FCHDR). FCHDR collaborates with a wide variety of federal and nonfederal partners to support and disseminate research that aims to reduce or eliminate disparities in health and health care. Given the complexity involved in eliminating health disparities, there is a need for more transdisciplinary, collaborative research, and facilitating that research is FCHDR's mission. PMID:19762652

Palliative Care: Delivering Comprehensive Oncology Nursing Care.

PubMed

Dahlin, Constance

2015-11-01

To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.

Extending specialist palliative care to all?

PubMed

Field, D; Addington-Hall, J

1999-05-01

How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five potential barriers to extending specialist palliative care services to non-cancer patients in Britain. These are the skill base of current specialists in palliative care, difficulties in identifying candidates for specialist palliative care, the views of potential users of these services, resource implications and vested interests in present health service arrangements.

European Society for Medical Oncology (ESMO) position paper on supportive and palliative care.

PubMed

Jordan, K; Aapro, M; Kaasa, S; Ripamonti, C I; Scotté, F; Strasser, F; Young, A; Bruera, E; Herrstedt, J; Keefe, D; Laird, B; Walsh, D; Douillard, J Y; Cervantes, A

2018-01-01

Oncology has come a long way in addressing patients' quality of life, together with developing surgical, radio-oncological and medical anticancer therapies. However, the multiple and varying needs of patients are still not being met adequately as part of routine cancer care. Supportive and palliative care interventions should be integrated, dynamic, personalised and based on best evidence. They should start at the time of diagnosis and continue through to end-of-life or survivorship. ESMO is committed to excellence in all aspects of oncological care during the continuum of the cancer experience. Following the 2003 ESMO stand on supportive and palliative care (Cherny N, Catane R, Kosmidis P. ESMO takes a stand on supportive and palliative care. Ann Oncol 2003; 14(9): 1335-1337), this position paper highlights the evolving and growing gap between the needs of cancer patients and the actual provision of care. The concept of patient-centred cancer care is presented along with key requisites and areas for further work. © The Author 2017. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Challenges for Multilevel Health Disparities Research in a Transdisciplinary Environment

PubMed Central

Holmes, John H.; Lehman, Amy; Hade, Erinn; Ferketich, Amy K.; Sarah, Gehlert; Rauscher, Garth H.; Abrams, Judith; Bird, Chloe E.

2008-01-01

Numerous factors play a part in health disparities. Although health disparities are manifested at the level of the individual, other contexts should be considered when investigating the associations of disparities with clinical outcomes. These contexts include families, neighborhoods, social organizations, and healthcare facilities. This paper reports on health disparities research as a multilevel research domain from the perspective of a large national initiative. The Centers for Population Health and Health Disparities (CPHHD) program was established by the NIH to examine the highly dimensional, complex nature of disparities and their effects on health. Because of its inherently transdisciplinary nature, the CPHHD program provides a unique environment in which to perform multilevel health disparities research. During the course of the program, the CPHHD centers have experienced challenges specific to this type of research. The challenges were categorized along three axes: sources of subjects and data, data characteristics, and multilevel analysis and interpretation. The CPHHDs collectively offer a unique example of how these challenges are met; just as importantly, they reveal a broad range of issues that health disparities researchers should consider as they pursue transdisciplinary investigations in this domain, particularly in the context of a large team science initiative. PMID:18619398

Palliative sedation in end-of-life care.

PubMed

Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2013-07-01

The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.

A Review of Palliative Sedation.

PubMed

Bobb, Barton

2016-09-01

Palliative sedation has become a standard practice to treat refractory symptoms at end-of-life. Dyspnea and delirium are the two most commonly treated symptoms. The medications used in palliative sedation are usually benzodiazepines, barbiturates, antipsychotics, and/or anesthetics. Some ethical considerations remain, especially surrounding the use of palliative sedation in psychological distress and existential suffering. Copyright © 2016 Elsevier Inc. All rights reserved.

Translation and Testing of the Italian Version of FAMCARE-2: Measuring Family Caregivers' Satisfaction With Palliative Care.

PubMed

D'Angelo, Daniela; Punziano, Antonella Cinzia; Mastroianni, Chiara; Marzi, Annamaria; Latina, Roberto; Ghezzi, Valerio; Piredda, Michela; De Marinis, Maria Grazia

2017-05-01

Family satisfaction is an important outcome of palliative care and is a critical measure for health care professionals to address when assessing quality of care. The FAMCARE-2 is a widely used measure of family satisfaction with the health care received by both patient and family in palliative care. In this study, a team of Italian researchers culturally adapted the FAMCARE-2 to the Italian language and psychometrically tested the instrument by measuring satisfaction of 185 family caregivers of patients admitted into two palliative care services. FAMCARE-2 showed excellent levels of internal consistency (Cronbach's α coefficient = .96) and test-retest reliability ( r = .98, p < .01). The confirmatory factor analysis showed a single-factor structure with good fit. Satisfaction levels were significantly correlated with family caregivers being females with less education, patient length of care, and place of assistance and death. This scale can help health care professionals identify which aspects of care need improvement and enable family caregivers to manage their challenging role.

Expert knowledge in palliative care on the World Wide Web: palliativedrugs.org.

PubMed

Gavrin, Jonathan

2009-01-01

In my last Internet-related article, I speculated that social networking would be the coming wave in the effort to share knowledge among experts in various disciplines. At the time I did not know that a palliative care site on the World Wide Web (WWW), palliativedrugs.com, already provided the infrastructure for sharing expert knowledge in the field. The Web site is an excellent traditional formulary but it is primarily devoted to "unlicensed" ("off-label") use of medications in palliative care, something we in the specialty often do with little to support our interventions except shared knowledge and experience. There is nothing fancy about this Web site. In a good way, its format is a throwback to Web sites of the 1990s. In only the loosest sense can one describe it as "multimedia." Yet, it provides the perfect forum for expert knowledge and is a "must see" resource. Its existing content is voluminous and reliable, filtered and reviewed by renowned clinicians and educators in the field. Although its origin and structure were not specifically designed for social or professional networking, the Web site's format makes it a natural way for practitioners around the world to contribute to an ever-growing body of expertise in palliative care.

Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN).

PubMed

Yamaguchi, Takashi; Kuriya, Meiko; Morita, Tatsuya; Agar, Meera; Choi, Youn Seon; Goh, Cynthia; Lingegowda, K B; Lim, Richard; Liu, Rico K Y; MacLeod, Roderick; Ocampo, Rhodora; Cheng, Shao-Yi; Phungrassami, Temsak; Nguyen, Yen-Phi; Tsuneto, Satoru

2017-03-01

Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Palliative Sedation in Patients With Cancer.

PubMed

Maltoni, Marco; Setola, Elisabetta

2015-10-01

Palliative sedation involves the use of sedative medication to relieve refractory symptoms in patients by reducing their level of consciousness. Although it is considered an acceptable clinical practice from most ethical points of view, palliative sedation is still a widely debated procedure and merits better understanding. The relevant medical literature pertaining to palliative sedation was analyzed and reviewed from various technical, relational, and bioethical perspectives. Proportionate palliative sedation is considered to be the most clinically appropriate modality for performing palliative sedation. However, guidelines must be followed to ensure that it is performed correctly. Benzodiazepines represent the first therapeutic option and careful monitoring of dosages is essential to avoid oversedation or undersedation. Proportionate palliative sedation is used to manage and relieve refractory symptoms in patients with cancer during their last days or hours of life. Evidence suggests that its use has no detrimental effect on survival. A different decision-making process is used to manage the withdrawal of hydration than the process used to determine whether proportionate palliative sedation is appropriate. Communication between patients, their relatives, and the health care staff is important during this medical intervention.

Japanese Bereaved Family Members' Perspectives of Palliative Care Units and Palliative Care: J-HOPE Study Results.

PubMed

Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo

2016-06-01

The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care. © The Author(s) 2015.

Palliation: Hilar cholangiocarcinoma

PubMed Central

Goenka, Mahesh Kr; Goenka, Usha

2014-01-01

Hilar cholangiocarcinomas are common tumors of the bile duct that are often unresectable at presentation. Palliation, therefore, remains the goal in the majority of these patients. Palliative treatment is particularly indicated in the presence of cholangitis and pruritus but is often also offered for high-grade jaundice and abdominal pain. Endoscopic drainage by placing stents at endoscopic retrograde cholangio-pancreatography (ERCP) is usually the preferred modality of palliation. However, for advanced disease, percutaneous stenting has been shown to be superior to endoscopic stenting. Endosonography-guided biliary drainage is emerging as an alternative technique, particularly when ERCP is not possible or fails. Metal stents are usually preferred over plastic stents, both for ERCP and for percutaneous biliary drainage. There is no consensus as to whether it is necessary to place multiple stents within advanced hilar blocks or whether unilateral stenting would suffice. However, recent data have suggested that, contrary to previous belief, it is useful to drain more than 50% of the liver volume for favorable long-term results. In the presence of cholangitis, it is beneficial to drain all of the obstructed biliary segments. Surgical bypass plays a limited role in palliation and is offered primarily as a segment III bypass if, during a laparotomy for resection, the tumor is found to be unresectable. Photodynamic therapy and, more recently, radiofrequency ablation have been used as adjuvant therapies to improve the results of biliary stenting. The exact technique to be used for palliation is guided by the extent of the biliary involvement (Bismuth class) and the availability of local expertise. PMID:25232449

Palliative care and palliative radiation therapy education in radiation oncology: A survey of US radiation oncology program directors.

PubMed

Wei, Randy L; Colbert, Lauren E; Jones, Joshua; Racsa, Margarita; Kane, Gabrielle; Lutz, Steve; Vapiwala, Neha; Dharmarajan, Kavita V

The purpose of this study was to assess the state of palliative and supportive care (PSC) and palliative radiation therapy (RT) educational curricula in radiation oncology residency programs in the United States. We surveyed 87 program directors of radiation oncology residency programs in the United States between September 2015 and November 2015. An electronic survey on PSC and palliative RT education during residency was sent to all program directors. The survey consisted of questions on (1) perceived relevance of PSC and palliative RT to radiation oncology training, (2) formal didactic sessions on domains of PSC and palliative RT, (3) effective teaching formats for PSC and palliative RT education, and (4) perceived barriers for integrating PSC and palliative RT into the residency curriculum. A total of 57 responses (63%) was received. Most program directors agreed or strongly agreed that PSC (93%) and palliative radiation therapy (99%) are important competencies for radiation oncology residents and fellows; however, only 67% of residency programs had formal educational activities in principles and practice of PSC. Most programs had 1 or more hours of formal didactics on management of pain (67%), management of neuropathic pain (65%), and management of nausea and vomiting (63%); however, only 35%, 33%, and 30% had dedicated lectures on initial management of fatigue, assessing role of spirituality, and discussing advance care directives, respectively. Last, 85% of programs reported having a formal curriculum on palliative RT. Programs were most likely to have education on palliative radiation to brain, bone, and spine, but less likely on visceral, or skin, metastasis. Residency program directors believe that PSC and palliative RT are important competencies for their trainees and support increasing education in these 2 educational domains. Many residency programs have structured curricula on PSC and palliative radiation education, but room for improvement exists in

Challenges of Using Methadone in the Indian Pain and Palliative Care Practice.

PubMed

Viswanath, Vidya; Palat, Gayatri; Chary, Srini; Broderick, Ann

2018-01-01

Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs), the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome. As compelling as the need for methadone is, many challenges await. This article outlines the challenges of procuring methadone and also discusses the challenges specific to methadone. Balancing the availability and diversion in a setting of opioid phobia, implementing the amended laws to improve availability and accessibility in a country with diverse health-care practices are the major challenges in implementing methadone for relief of pain. The unique pharmacology of the drug requires meticulous patient selection, vigilant monitoring, and excellent communication and collaboration with a multidisciplinary team and caregivers. The psychological acceptance of the patient, the professional training of the team and the place where care is provided are also challenges which need to be overcome. These challenges could well be the catalyst for a more diligent and vigilant approach to opioid prescribing practices. Start low, go slow could well be the way forward with caregiver education to prescribe methadone safely in the Indian palliative care setting.

Does educating patients about the Early Palliative Care Study increase preferences for outpatient palliative cancer care? Findings from Project EMPOWER.

PubMed

Hoerger, Michael; Perry, Laura M; Gramling, Robert; Epstein, Ronald M; Duberstein, Paul R

2017-06-01

Randomized controlled trials, especially the Early Palliative Care Study (Temel et al., 2010), have shown that early outpatient palliative cancer care can improve quality of life for patients with advanced cancer or serious symptoms. However, fear and misconceptions drive avoidance of palliative care. Drawing from an empowerment perspective, we examined whether educating patients about evidence from the Early Palliative Care Study would increase preferences for palliative care. A sample of 598 patients with prostate, breast, lung, colon/rectal, skin, and other cancer diagnoses completed an Internet-mediated experiment using a between-group prepost design. Intervention participants received a summary of the Early Palliative Care Study; controls received no intervention. Participants completed baseline and posttest assessments of preferences of palliative care. Analyses controlled for age, gender, education, cancer type, presence of metastases, time since diagnosis, and baseline preferences. As hypothesized, the intervention had a favorable impact on participants' preferences for outpatient palliative cancer care relative to controls (d = 1.01, p < .001), while controlling for covariates. Intervention participants came to view palliative care as more efficacious (d = 0.79, p < .001) and less scary (d = 0.60, p < .001) and exhibited stronger behavioral intentions to utilize outpatient palliative care if referred (d = 0.60, p < .001). Findings were comparable in patients with metastatic disease, those with less education, and those experiencing financial strain. Educating patients about the Early Palliative Care Study increases preferences for early outpatient palliative care. This research has implications for future studies aimed at improving quality of life in cancer by increasing palliative care utilization. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Developing a costing framework for palliative care services.

PubMed

Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R

2014-10-01

Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Perioperative Palliative Care Considerations for Surgical Oncology Nurses.

PubMed

Sipples, Rebecca; Taylor, Richard; Kirk-Walker, Deborah; Bagcivan, Gulcan; Dionne-Odom, J Nicholas; Bakitas, Marie

2017-02-01

To explore the opportunities to incorporate palliative care into perioperative oncology patient management and education strategies for surgical oncology nurses. Articles related to palliative care and surgical oncology to determine the degree of integration, gaps, and implications for practice. Although evidence supports positive patient outcomes when palliative care is integrated in the perioperative period, uptake of palliative care into surgical settings is slow. Palliative care concepts are not adequately integrated into surgical and nursing education. With appropriate palliative care education and training, surgical oncology nurses will be empowered to foster surgical-palliative care collaborations to improve patient outcomes. Copyright © 2016 Elsevier Inc. All rights reserved.

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation.

PubMed

Janssens, Rien; van Delden, Johannes J M; Widdershoven, Guy A M

2012-11-01

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

Early Palliative Care-Health services research and implementation of sustainable changes: the study protocol of the EVI project.

PubMed

Meffert, Cornelia; Gaertner, Jan; Seibel, Katharina; Jors, Karin; Bardenheuer, Hubert; Buchheidt, Dieter; Mayer-Steinacker, Regine; Viehrig, Marén; Paul, Christina; Stock, Stephanie; Xander, Carola; Becker, Gerhild

2015-05-29

International medical organizations such as the American Society of Medical Oncology recommend early palliative care as the "gold standard" for palliative care in patients with advanced cancer. Nevertheless, even in Comprehensive Cancer Centers, early palliative care is not yet routine practice. The main goal of the EVI project is to evaluate whether early palliative care can be implemented-in the sense of "putting evidence into practice"-into the everyday clinical practice of Comprehensive Cancer Centers. In addition, we are interested in (1) describing the type of support that patients would like from palliative care, (2) gaining information about the effect of palliative care on patients' quality of life, and (3) understanding the economic burden of palliative care on patients and their families. The EVI project is a multi-center, prospective cohort study with a sequential control group design. The study is a project of the Palliative Care Center of Excellence (KOMPACT) in Baden-Württemberg, Germany, which was recently established to combine the expertise of five academic, specialist palliative care departments. The study is divided into two phases: preliminary phase (months 1-9) and main study phase (months 10-18). In each of all five participating academic Comprehensive Cancer Centers, an experienced palliative care physician will be hired for 18 months. During the preliminary phase, the physician will be allowed time to establish the necessary structures for early palliative care within the Comprehensive Cancer Center. In the main study phase, patients with metastatic cancer will be offered a consultation with the palliative care physician within eight weeks of diagnosis. After the initial consultation, follow-up consultations will be offered as needed. The study is built upon a convergent parallel design. In the quantitative arm, patients will be surveyed in both the preliminary and main study phase at three points in time (baseline, 12 weeks, 24 weeks

Transdisciplinary science: a path to understanding the interactions among ocean acidification, ecosystems, and society

USGS Publications Warehouse

Yates, Kimberly K.; Turley, Carol; Hopkinson, Brian M.; Todgham, Anne E.; Cross, Jessica N.; Greening, Holly; Williamson, Phillip; Van Hooidonk, Ruben; Deheyn, Dimitri D.; Johnson, Zachary

2015-01-01

The global nature of ocean acidification (OA) transcends habitats, ecosystems, regions, and science disciplines. The scientific community recognizes that the biggest challenge in improving understanding of how changing OA conditions affect ecosystems, and associated consequences for human society, requires integration of experimental, observational, and modeling approaches from many disciplines over a wide range of temporal and spatial scales. Such transdisciplinary science is the next step in providing relevant, meaningful results and optimal guidance to policymakers and coastal managers. We discuss the challenges associated with integrating ocean acidification science across funding agencies, institutions, disciplines, topical areas, and regions, and the value of unifying science objectives and activities to deliver insights into local, regional, and global scale impacts. We identify guiding principles and strategies for developing transdisciplinary research in the ocean acidification science community.

Surgeons' Perceived Barriers to Palliative and End-of-Life Care: A Mixed Methods Study of a Surgical Society.

PubMed

Suwanabol, Pasithorn A; Reichstein, Ari C; Suzer-Gurtekin, Z Tuba; Forman, Jane; Silveira, Maria J; Mody, Lona; Morris, Arden M

2018-06-01

Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care. To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs. This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions. Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons. Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified. Among 131 Internet survey respondents (response rate 16.5%), 76.1% reported no formal education in palliative care, and specifically noted inadequate training in techniques to forgo life-sustaining measures (37.9%) and communication (42.7%). Over half (61.8%) of surgeons cited unrealistic expectations among patients and families as a barrier to care, which also limited discussion of palliation. At the system level, absence of documentation, appropriate processes, and culture hindered the initiation of palliative care. Thematic analysis of open-ended questions confirmed and extended these findings through the following major barriers to palliative and end-of-life care: (1) surgeon knowledge and training; (2) communication challenges; (3) difficulty with prognostication; (4) patient and family factors encompassing unrealistic expectations and discordant preferences; and (5) systemic issues including culture and lack of documentation and appropriate resources. Generalizability is limited by the small sample size inherent to Internet surveys, which may contribute to selection bias

Looking to the Future: Producing Transdisciplinary Professionals for Leadership in Early Childhood Settings

ERIC Educational Resources Information Center

Cartmel, Jennifer; Macfarlane, Kym; Nolan, Andrea

2013-01-01

This paper reports on an Australian initiative "Developing and Sustaining Pedagogical Leadership in Early Childhood Education and Care Professionals," where academics and professionals shared knowledge, experience and research about transdisciplinary practice. The project aimed to develop an understanding of the strategies and skills…

Palliative sedation versus euthanasia: an ethical assessment.

PubMed

ten Have, Henk; Welie, Jos V M

2014-01-01

The aim of this article was to review the ethical debate concerning palliative sedation. Although recent guidelines articulate the differences between palliative sedation and euthanasia, the ethical controversies remain. The dominant view is that euthanasia and palliative sedation are morally distinct practices. However, ambiguous moral experiences and considerable practice variation call this view into question. When heterogeneous sedative practices are all labeled as palliative sedation, there is the risk that palliative sedation is expanded to include practices that are actually intended to bring about the patients' death. This troublesome expansion is fostered by an expansive use of the concept of intention such that this decisive ethical concept is no longer restricted to signify the aim in guiding the action. In this article, it is argued that intention should be used in a restricted way. The significance of intention is related to other ethical parameters to demarcate the practice of palliative sedation: terminality, refractory symptoms, proportionality, and separation from other end-of-life decisions. These additional parameters, although not without ethical and practical problems, together formulate a framework to ethically distinguish a more narrowly defined practice of palliative sedation from practices that are tantamount to euthanasia. Finally, the article raises the question as to what impact palliative sedation might have on the practice of palliative care itself. The increasing interest in palliative sedation may reemphasize characteristics of health care that initially encouraged the emergence of palliative care in the first place: the focus on therapy rather than care, the physical dimension rather than the whole person, the individual rather than the community, and the primacy of intervention rather than receptiveness and presence. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Dental Disease in Infants and Toddlers: A Transdisciplinary Health Concern and Approach

ERIC Educational Resources Information Center

Finn, Emanuel; Wolpin, Scott

2005-01-01

This article describes the consequences of dental disease among children under age 3. "Early childhood carries" (ECC) is preventable but is still a major public health problem--especially in poor and medically underserved communities--due to lack of awareness about prevention. The authors explain that in transdisciplinary care, practitioners work…

Transdisciplinary collaboration of academia and practice in the area of serious mental illness.

PubMed

Connolly, P M

1995-12-01

The Transdisciplinary Collaboration Project at San Jose State University in San Jose, California, focuses on providing high-quality services for persons with serious mental illness living in the community while preparing future mental health professionals to practise in an environment of cultural diversity and cost containment. Rehospitalization and emergency psychiatric services were decreased and community tenure increased at two board and care sites. The total cost savings for 1 year for 25 individuals was $373,830. Nursing, communication disorders, occupational therapy, social work, and therapeutic recreation students and faculty provided over 5000 hours of direct care during the 1993-95 academic years. Studies on client and student satisfaction revealed high levels of satisfaction. Unique components of the project include university organized transdisciplinary seminars for students, agency personnel and, when appropriate, residents, faculty practice, faculty led groups, employment for former clients/consumers and faculty consultation services.

A Transdisciplinary Approach to Public Health Law: The Emerging Practice of Legal Epidemiology

PubMed Central

Burris, Scott; Ashe, Marice; Levin, Donna; Penn, Matthew; Larkin, Michelle

2017-01-01

Public health law has roots in both law and science. For more than a century, lawyers have helped develop and implement health laws; over the past 50 years, scientific evaluation of the health effects of laws and legal practices has achieved high levels of rigor and influence. We describe an emerging model of public health law that unites these two traditions. This transdisciplinary model adds scientific practices to the lawyerly functions of normative and doctrinal research, counseling, and representation. These practices include policy surveillance and empirical public health law research on the efficacy of legal interventions and the impact of laws and legal practices on health and health system operation. A transdisciplinary model of public health law, melding its legal and scientific facets, can help break down enduring cultural, disciplinary, and resource barriers that have prevented the full recognition and optimal role of law in public health. PMID:26667606

A Transdisciplinary Approach to Public Health Law: The Emerging Practice of Legal Epidemiology.

PubMed

Burris, Scott; Ashe, Marice; Levin, Donna; Penn, Matthew; Larkin, Michelle

2016-01-01

Public health law has roots in both law and science. For more than a century, lawyers have helped develop and implement health laws; over the past 50 years, scientific evaluation of the health effects of laws and legal practices has achieved high levels of rigor and influence. We describe an emerging model of public health law that unites these two traditions. This transdisciplinary model adds scientific practices to the lawyerly functions of normative and doctrinal research, counseling, and representation. These practices include policy surveillance and empirical public health law research on the efficacy of legal interventions and the impact of laws and legal practices on health and health system operation. A transdisciplinary model of public health law, melding its legal and scientific facets, can help break down enduring cultural, disciplinary, and resource barriers that have prevented the full recognition and optimal role of law in public health.

A palliative care needs assessment of rural hospitals.

PubMed

Fink, Regina M; Oman, Kathleen S; Youngwerth, Jeanie; Bryant, Lucinda L

2013-06-01

Palliative care services are lacking in rural hospitals. Implementing palliative care services in rural and remote areas requires knowledge of available resources, specific barriers, and a commitment from the hospital and community. The purpose of the study was to determine awareness, knowledge, barriers, and resources regarding palliative care services in rural hospitals. A descriptive survey design used an investigator-developed needs assessment to survey 374 (40% response rate) health care providers (chief executive officers, chiefs of medical staff, chief nursing officers, and social worker directors) at 236 rural hospitals (<100 beds) in seven Rocky Mountain states. Significant barriers to integrating palliative care exist: lack of administrative support, mentorship, and access to palliative care resources; inadequate basic knowledge about palliative care strategies; and limited training/skills in palliative care. Having contractual relationships with local hospices is a key facilitator. Respondents (56%) want to learn more about palliative care, specifically focusing on pain management, communication techniques, and end-of-life care issues. Webinar and online courses were suggested as strategies to promote long distance learning. It is imperative for quality of care that rural hospitals have practitioners who are up to date on current evidence and practice within a palliative care framework. Unique challenges exist to implementing palliative care services in rural hospitals. Opportunities for informing rural areas focus around utilizing existing hospice resources and relationships, and favoring Web-based classes and online courses. The development of a multifaceted intervention to facilitate education about palliative care and cultivate palliative care services in rural settings is indicated.

Practical Tips and Techniques on the Process of Transdisciplinary Sea Level Rise Research

NASA Astrophysics Data System (ADS)

DeLorme, D.; Hagen, S. C.; Kidwell, D.; Stephens, S. H.

2015-12-01

There is increasing awareness of the need for transdisciplinary science to address complex climate change issues, yet practical guidance is lacking. This presentation describes the iterative planning, implementation, and evaluation process of an ongoing transdisciplinary sea level rise (SLR) research project. Observations, reflections, and recommendations from firsthand experience are shared, illustrated with examples, and placed within a transdisciplinary research framework. The NOAA-sponsored project, Ecological Effects of Sea Level Rise in the Northern Gulf of Mexico (EESLR-NGOM) is a six-year regional study involving a team of biology, ecology, civil/coastal engineering, and communication scholars working with government agency personnel and industry professionals; supervising students and post-doctoral researchers; and engaging a group of non-academic stakeholders (i.e., coastal resource managers). EESLR-NGOM's focus is on detailed assessment and process-based modeling to project SLR impacts on northern Gulf of Mexico coastal wetland habitats and flood plains. This presentation highlights collaboration, communication, and project management considerations, and explains knowledge co-production from a dynamic combination of natural and social scientific methods (secondary data analysis, computer modeling, field observations, field and laboratory experiments, focus group interviews, surveys) and interrelated stakeholder engagement mechanisms (advisory committee, project flow chart, workshops, focus groups, webinars) infused throughout the EESLR-NGOM project to improve accessibility and utility of the scientific results and products. Attention is also given to project evaluation including monitoring, multiple quantitative and qualitative measures, and recognition of challenges and limitations. This presentation should generate productive dialogue and direction for similar endeavors to find transformative solutions to pressing problems of climate change.

Community Palliative Care Nurses' Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care.

PubMed

Chong, LeeAi; Abdullah, Adina

2017-03-01

The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.

Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

PubMed

Weissman, David E; Morrison, R Sean; Meier, Diane E

2010-02-01

Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

The process of palliative sedation as viewed by physicians and nurses working in palliative care in Brazil.

PubMed

Spineli, Vívian Marina Calixto Damasceno; Kurashima, Andrea Yamaguchi; De Gutiérrez, Maria Gaby Rivero

2015-10-01

Our aim was to describe the process of palliative sedation from the point of view of physicians and nurses working in palliative care in Brazil. Ours was a descriptive study conducted between May and December of 2011, with purposeful snowball sampling of 32 physicians and 29 nurses working in facilities in Brazil that have adopted the practice of palliative care. The symptoms prioritized for an indication of palliative sedation were dyspnea, delirium, and pain. Some 65.6% of respondents believed that the survival time of a patient in the final phase was not a determining factor for the indication of this measure, and that the patient, family, and healthcare team should participate in the decision-making process. For 42.6% of these professionals, the opinion of the family was the main barrier to an indication of this therapy. The opinion of the physicians and nurses who participated in this study converged with the principal national and international guidelines on palliative sedation. However, even though it is a therapy that has been adopted in palliative care, it remains a controversial practice.

[Multiprofessional cooperation in palliative care].

PubMed

Falckenberg, Maja

2007-04-01

"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.

Update in Hospice and Palliative Care.

PubMed

Taylor, Richard A; Smith, Cardinale B; Coats, Heather; Gelfman, Laura P; Dionne-Odom, J Nicholas

2017-11-01

The objective of this update, presented at the 2017 Annual Assembly of the American Association of Palliative and Hospice Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of research from the prior year that has the potential for marked impact on hospice and palliative clinical practice. Eight reports of original research published between January 1, 2016 and December 31, 2016 were identified through a systematic PubMed search using the terms "hospice" and "palliative care," a hand search of 22 leading healthcare journals, and discussion with experts in the field. Candidate articles were ranked based on the study's methodological quality, appeal to a breadth of palliative care clinicians across different settings, and potential clinical practice impact. We summarize the eight articles with the highest ratings and give recommendations for clinical practice.

A systems science perspective and transdisciplinary models for food and nutrition security

PubMed Central

Hammond, Ross A.; Dubé, Laurette

2012-01-01

We argue that food and nutrition security is driven by complex underlying systems and that both research and policy in this area would benefit from a systems approach. We present a framework for such an approach, examine key underlying systems, and identify transdisciplinary modeling tools that may prove especially useful. PMID:22826247

Assessing the validity of discourse analysis: transdisciplinary convergence

NASA Astrophysics Data System (ADS)

Jaipal-Jamani, Kamini

2014-12-01

Research studies using discourse analysis approaches make claims about phenomena or issues based on interpretation of written or spoken text, which includes images and gestures. How are findings/interpretations from discourse analysis validated? This paper proposes transdisciplinary convergence as a way to validate discourse analysis approaches to research. The argument is made that discourse analysis explicitly grounded in semiotics, systemic functional linguistics, and critical theory, offers a credible research methodology. The underlying assumptions, constructs, and techniques of analysis of these three theoretical disciplines can be drawn on to show convergence of data at multiple levels, validating interpretations from text analysis.

Palliative care - shortness of breath

MedlinePlus

... this page: //medlineplus.gov/ency/patientinstructions/000471.htm Palliative care - shortness of breath To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

PubMed

Ela, Sara; Espinosa, Jose; Martínez-Muñoz, Marisa; Lasmarías, Cristina; Beas, Elba; Mateo-Ortega, Dolors; Novellas, Anna; Gómez-Batiste, Xavier

2014-04-01

The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

Cybersemiotics: a transdisciplinary framework for information studies.

PubMed

Brier, S

1998-04-01

This paper summarizes recent attempts by this author to create a transdisciplinary, non-Cartesian and non-reductionistic framework for information studies in natural, social, and technological systems. To confront, in a scientific way, the problems of modern information technology where phenomenological man is dealing with socially constructed texts in algorithmically based digital bit-machines we need a theoretical framework spanning from physics over biology and technological design to phenomenological and social production of signification and meaning. I am working with such pragmatic theories as second order cybernetics (coupled with autopolesis theory), Lakoffs biologically oriented cognitive semantics, Peirce's triadic semiotics, and Wittgenstein's pragmatic language game theory. A coherent synthesis of these theories is what the cybersemiotic framework attempts to accomplish.

Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

PubMed

Voeuk, Anna; Nekolaichuk, Cheryl; Fainsinger, Robin; Huot, Ann

2017-01-01

Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

[Austrian guideline for palliative sedation therapy (long version) : Results of a Delphi process of the Austrian Palliative Society (OPG)].

PubMed

Weixler, Dietmar; Roider-Schur, Sophie; Likar, Rudolf; Bozzaro, Claudia; Daniczek, Thomas; Feichtner, Angelika; Gabl, Christoph; Hammerl-Ferrari, Bernhard; Kletecka-Pulker, Maria; Körtner, Ulrich H J; Kössler, Hilde; Meran, Johannes G; Miksovsky, Aurelia; Pusswald, Bettina; Wienerroither, Thomas; Watzke, Herbert

2017-02-01

Palliative sedation therapy (PST) is an important and ethically accepted therapy in the care of selected palliative care patients with otherwise unbearable suffering from refractory distress. PST is increasingly used in end-of-life care. Austria does not have a standardized ethical guideline for this exceptional practice near end of life, but there is evidence that practice varies throughout the country. The Austrian Palliative Society (OPG) nominated a multidisciplinary working group of 16 palliative care experts and ethicists who established the national guideline on the basis of recent review work with the aim to adhere to the Europeans Association of Palliative Care's (EAPC) framework on palliative sedation therapy respecting Austrians legal, structural and cultural background. Consensus was achieved by a four-step sequential Delphi process. The Delphi-process was strictly orientated to the recently published EUROIMPACT-sedation-study-checklist and to the AGREE-2-tool. Additionally national stakeholders participated in the reflection of the results. As a result of a rigorous consensus process the long version of the Austrian National Palliative Sedation Guideline contains 112 statements within eleven domains and is supplemented by a philosophers excursus on suffering. By establishing a national guideline for palliative sedation therapy using the Delphi technique for consensus and stakeholder involvement the Austrian Palliative Society aims to ensure nationwide good practice of palliative sedation therapy. Screening for the practicability and efficacy of this guideline will be a future task.

The palliative care knowledge questionnaire for PEACE: reliability and validity of an instrument to measure palliative care knowledge among physicians.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Morita, Tatsuya

2013-11-01

In Japan, a nationwide palliative care education program for primary palliative care (the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education: PEACE) was established in 2008. Effective delivery of such programs relies on adequate evaluations of program efficacy; however, such an instrument does not exist. This study aimed to develop and validate a measurement tool to quantify knowledge level of physicians about broader areas of palliative care, by which the effect of an education program could be measured. We conducted a cross-sectional, anonymous, self-administered questionnaire survey with a group of 801 conveniently sampled physicians in October 2010. To examine the test-retest reliability of items and domains, the questionnaire was reissued two weeks after the first survey was completed. This study used psychometric methods, including item response theory, intraclass correlation coefficients, and known-group validity. The response rate was 54% (n=434). We included 33 items across the following 9 domains: (1) philosophy of palliative care, (2) cancer pain, (3) side effects of opioids, (4) dyspnea, (5) nausea and vomiting, (6) psychological distress, (7) delirium, (8) communication regarding palliative care, and (9) community-based palliative care. For these items, the intraclass correlation was 0.84 and the Kuder-Richardson Formula 20 (KR-20) test of internal consistency was 0.87. There was a significant difference in the scores between palliative care specialists and other physicians. We successfully validated a newly developed palliative care knowledge questionnaire to evaluate PEACE effectiveness (PEACE-Q). The PEACE-Q could be useful for evaluating both palliative care knowledge among physicians and education programs in primary palliative care.

Survival time of dogs with inflammatory mammary cancer treated with palliative therapy alone or palliative therapy plus chemotherapy.

PubMed

Clemente, M; De Andrés, P J; Peña, L; Pérez-Alenza, M D

2009-07-18

Seven of 30 female dogs diagnosed with inflammatory mammary cancer were given chemotherapy and palliative treatment, and the other 23 received only palliative treatment. The median survival time of the seven dogs given chemotherapy was 57 days, compared with 35 days for the 23 given only palliative treatment.

Children’s palliative care now! Highlights from the second ICPCN conference on children’s palliative care, 18–21 May 2016, Buenos Aires, Argentina

PubMed Central

Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

2016-01-01

The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

Legal Support for Palliative Care Patients.

PubMed

Ezer, Tamar; Burke-Shyne, Naomi; Hepford, Kiera

2018-02-01

Palliative care patients face legal issues that impact their quality of life. Legal support, embedded in holistic palliative care services, has developed globally over the last decade to address this. This article aims to trace the origins of legal support for palliative care patients, detail models of legal support, and describe achievements and challenges. The article draws on years of work in this area and the available literature. Common legal issues include disposing of property and drafting wills, planning for children, dealing with debt and securing social benefits, and addressing discrimination. Diverse approaches to integrating legal support include developing paralegal skills, accessing skilled legal advice, empowering patients and families, and building awareness of rights among health care workers. There is robust and growing acceptance of legal support as a key component of holistic palliative care, and many palliative care professionals are identifying and addressing the legal needs they encounter through mediation, guidance on basic rights, or referrals to a lawyer. Addressing legal problems can contribute to peace of mind, well-being, and the health of patients. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Interdisciplinary and Transdisciplinary Research and Education in Canada: A Review and Suggested Framework

ERIC Educational Resources Information Center

Gillis, Daniel; Nelson, Jessica; Driscoll, Brianna; Hodgins, Kelly; Fraser, Evan; Jacobs, Shoshanah

2017-01-01

Transcending disciplinary boundaries is becoming increasingly important for devising solutions to the world's most pressing issues, such as climate change and food insecurity. Institutions of higher education often present challenges to teaching students how to work and innovate on transdisciplinary teams. We first define transdisciplinarity and…

Advancing palliative care as a human right.

PubMed

Gwyther, Liz; Brennan, Frank; Harding, Richard

2009-11-01

The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as

A TRANS-DISCIPLINARY APPROACH FOR TEACHING IMPLEMENTATION RESEARCH AND PRACTICE IN PUBLIC HEALTH

PubMed Central

Alonge, Olakunle; Frattaroli, Shannon; Davey-Rothwell, Melissa; Baral, Stefan

2016-01-01

The trans-disciplinary approach for teaching implementation research and practice (IR&P) in public health seeks to present related concepts on IR&P from multiple perspectives without paying an exclusive service to a specific home discipline. It is a response to the demand for a pedagogical approach to teaching that promotes a unity of knowledge around a subject that extends beyond the disciplinary boundaries within public health. Based on the experience of establishing a flagship course in IR&P at a graduate school of public health, we draw from existing theories and offer practical steps for developing and delivering content for IR&P from a trans-disciplinary perspective. The potential of this teaching approach is its ability to demonstrate the pervasiveness and easy transfer of relevant concepts in IR&P across multiple disciplines and settings. This teaching approach has relevance for influencing the overall technique to graduate level instruction in the health professions where multiple disciplines intersect. PMID:27795985

New challenges for palliative nursing.

PubMed

Aranda, Sanchia

1997-05-02

Editorials by Jeanette Webber and Libby White (IJPN 2(3)) explored threats to both the nursing profession and palliative nursing as the health system faces the reality of limited resources and expanding client needs. I wish to pick up on these issues in the light of changes proposed for palliative care in one Australian state, Victoria. My central argument is that to secure the future of palliative nursing, efforts must focus on demonstrating clearly the value and contribution of nurses to client and family outcomes. Why do I think we are challenged to do this?

Standardized research protocols enable transdisciplinary research of climate variation impacts in corn production systems

USDA-ARS?s Scientific Manuscript database

The important questions about agriculture, climate, and sustainability have become increasingly complex and require a coordinated, multi-faceted approach for developing new knowledge and understanding. A multi-state, transdisciplinary project was begun in 2011 to study the potential for both mitigat...

Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care

PubMed Central

Downing, J; Marston, J; Muckaden, MA; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P

2014-01-01

The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children�

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

PubMed

Eva, Gail; Morgan, Deidre

2018-05-01

Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey

PubMed Central

Eva, Gail; Morgan, Deidre

2018-01-01

Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care. PMID:29756556

Evaluation of Hospital-Based Palliative Care Programs.

PubMed

Hall, Karen Lynn; Rafalson, Lisa; Mariano, Kathleen; Michalek, Arthur

2016-02-01

This study evaluated current hospital-based palliative care programs using recommendations from the Center to Advance Palliative Care (CAPC) as a framework. Seven hospitals located in Buffalo, New York were included based on the existence of a hospital-based palliative care program. Data was collected from August through October of 2013 by means of key informant interviews with nine staff members from these hospitals using a guide comprised of questions based on CAPC's recommendations. A gap analysis was conducted to analyze the current state of each hospital's program based upon CAPC's definition of a quality palliative care program. The findings identify challenges facing both existing/evolving palliative care programs, and establish a foundation for strategies to attain best practices not yet implemented. This study affirms the growing availability of palliative care services among these selected hospitals along with opportunities to improve the scope of services in line with national recommendations. © The Author(s) 2014.

When there are no good choices: illuminating the borderland between proportionate palliative sedation and palliative sedation to unconsciousness.

PubMed

Reid, Thomas T; Demme, Richard A; Quill, Timothy E

2011-01-01

Despite state-of-the-art palliative care, some patients will require proportionate palliative sedation as a last-resort option to relieve intolerable suffering at the end of life. In this practice, progressively increasing amounts of sedation are provided until the target suffering is sufficiently relieved. Uncertainty and debate arise when this practice approaches palliative sedation to unconsciousness (PSU), especially when unconsciousness is specifically intended or when the target symptoms are more existential than physical. We constructed a case series designed to highlight some of the common approaches and challenges associated with PSU and the more aggressive end of the spectrum of proportionate palliative sedation as retrospectively identified by palliative care consultants over the past 5 years from a busy inpatient palliative care service at a tertiary medical center in Rochester (NY, USA). Ten cases were identified as challenging by the palliative care attendings, of which four were selected for presentation for illustrative purposes because they touched on central issues including loss of capacity, the role of existential suffering, the complexity of clinical intention, the role of an institutional policy and use of anesthetics as sedative agents. Two other cases were selected focusing on responses to two special situations: a request for PSU that was rejected; and anticipatory planning for total sedation in the future. Although relatively rare, PSU and more aggressive end-of-the-spectrum proportionate palliative sedation represent responses to some of the most challenging cases faced by palliative care clinicians. These complex cases clearly require open communication and collaboration among caregivers, patients and family. Knowing how to identify these circumstances, and how to approach these interventions of last resort are critical skills for practitioners who take care of patients at the end of life.

The impact of palliative care training for oncologists and integrative palliative service in a public-funded hospital cluster-a retrospective cohort study.

PubMed

Lam, Pak-Lun; Lam, Tai-Chung; Choi, Cheuk-Wai; Lee, Anne Wing-Mui; Yuen, Kwok-Keung; Leung, To-Wai

2018-05-01

Oncological care of advanced cancer patients was provided by multiple departments in Hong Kong. One of these departments, the clinical oncology department (COD), introduced systematic palliative care training for its oncologists since 2002. The COD was recognized as a European Society for Medical Oncology (ESMO) Designated Centre of Integrated Oncology and Palliative Care since 2009. This retrospective cohort study aims to review the impact of integrative training and service on palliative care coverage and outcome. Clinical information, palliative service provision, and end-of-life outcomes of patients who passed away from lung, colorectal, liver, stomach, or breast cancer in the Hong Kong West public hospital network during July 2015 to December 2015 were collected. A total of 307 patients were analyzed. Around half (49.2%) were attended primarily by COD, and 68.9% received palliative service. There are significantly fewer patients referred to palliative care from other departments (p < 0.001), with only 19.9% of this patient group receiving palliative referral. COD patients had longer palliative coverage before death (median 65 days versus 24 days, p < 0.001), higher chance of receiving end-of-life care at hospice units (36.4 versus 21.2%, p = 0.003), lower ICU admission (0.66 versus 5.1%, p = 0.02), and higher percentage of receiving strong opioid in the last 30 days of life (51.0 versus 28.9%, p < 0.001) compared to other departments. In multivariable analysis, COD being the primary care team (odds ratio 12.2, p < 0.001) was associated with higher palliative care coverage. The study results suggested that systematic palliative care training of oncologists and integrative palliative service model was associated with higher palliative service coverage and improved palliative care outcomes.

The burgeoning field of transdisciplinary adaptation research in Quebec (1998-): a climate change-related public health narrative.

PubMed

Gosselin, Pierre; Bélanger, Diane; Lapaige, Véronique; Labbé, Yolaine

2011-01-01

This paper presents a public health narrative on Quebec's new climatic conditions and human health, and describes the transdisciplinary nature of the climate change adaptation research currently being adopted in Quebec, characterized by the three phases of problem identification, problem investigation, and problem transformation. A transdisciplinary approach is essential for dealing with complex ill-defined problems concerning human-environment interactions (for example, climate change), for allowing joint research, collective leadership, complex collaborations, and significant exchanges among scientists, decision makers, and knowledge users. Such an approach is widely supported in theory but has proved to be extremely difficult to implement in practice, and those who attempt it have met with heavy resistance, succeeding when they find the occasional opportunity within institutional or social contexts. In this paper we narrate the ongoing struggle involved in tackling the negative effects of climate change in multi-actor contexts at local and regional levels, a struggle that began in a quiet way in 1998. The paper will describe how public health adaptation research is supporting transdisciplinary action and implementation while also preparing for the future, and how this interaction to tackle a life-world problem (adaptation of the Quebec public health sector to climate change) in multi-actors contexts has progressively been established during the last 13 years. The first of the two sections introduces the social context of a Quebec undergoing climate changes. Current climatic conditions and expected changes will be described, and attendant health risks for the Quebec population. The second section addresses the scientific, institutional and normative dimensions of the problem. It corresponds to a "public health narrative" presented in three phases: (1) problem identification (1998-2002) beginning in northern Quebec; (2) problem investigation (2002-2006) in which

Need for palliative care for neurological diseases.

PubMed

Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio

2016-10-01

The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

Integrating palliative care into comprehensive cancer care.

PubMed

Abrahm, Janet L

2012-10-01

While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care.

Transdisciplinary Case Studies as a Means of Sustainability Learning: Historical Framework and Theory

ERIC Educational Resources Information Center

Scholz, Roland W.; Lang, Daniel J.; Wiek, Arnim; Walter, Alexander I.; Stauffacher, Michael

2006-01-01

Purpose: This paper aims at presenting the theoretical concepts of the transdisciplinary case study approach (TCS), which is a research and teaching approach developed and elaborated at the Swiss Federal Institute of Technology (ETH), as a means of transition support. Design/methodology/approach: The paper reveals the historical roots of case…

Palliative Dental Care- A Boon for Debilitating

PubMed Central

Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

2014-01-01

World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

Suboptimal palliative sedation in primary care: an exploration.

PubMed

Pype, Peter; Teuwen, Inge; Mertens, Fien; Sercu, Marij; De Sutter, An

2018-02-01

Palliative sedation is a therapeutic option to control refractory symptoms in terminal palliative patients. This study aims at describing the occurrence and characteristics of suboptimal palliative sedations in primary care and at exploring the way general practitioners (GPs) experience suboptimal palliative sedation in their practice. We conducted a mixed methods study with a quantitative prospective survey in primary care and qualitative semi-structured interviews with GPs. The research team defined suboptimal palliative sedation as a time interval until deep sleep >1.5 h and/ or >2 awakenings after the start of the unconsciousness. Descriptive statistics were calculated on the quantitative data. Thematic analysis was used to analyse interview transcripts. We registered 63 palliative sedations in 1181 home deaths, 27 forms were completed. Eleven palliative sedations were suboptimal: eight due to the long time span until deep sleep; three due the number of unintended awakenings. GPs' interview analysis revealed two major themes: the shifting perception of failure and the burden of responsibility. Suboptimal palliative sedation occurs frequently in primary palliative care. Efficient communication towards family members is needed to prevent them from having unrealistic expectations and to prevent putting pressure on the GP to hasten the procedure. Sharing the burden of decision-making during the procedure with other health care professionals might diminish the heavy responsibility as perceived by GPs.

The Palliative Care Journey in Kenya and Uganda.

PubMed

Kamonyo, Emmanuel S

2018-02-01

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems. This update is aimed at examining palliative care development/achievements and challenges in Kenya and Uganda and the role of various actors in palliative care establishment in the region. It assesses the policy environment, progress in education, access to essential medicines, palliative care implementation efforts, and legal and human rights work. East African nations have huge disease burdens, both communicable and noncommunicable. HIV and cancer are the major causes of mortality in Kenya and Uganda and put huge demands on the health care system and on the country's economies. All these conditions will require palliative care services as the disease burden increases. Unfortunately, for many African countries, accessing palliative care services, including access to pain relief, remains very limited resulting in serious suffering for patients and their families. The interventions in Kenya and Uganda help palliative care organizations engage with their respective governments to ensure that the social and legal barriers impeding access to palliative care services are removed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative care and neurology: time for a paradigm shift.

PubMed

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

2014-08-05

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.

Cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure.

PubMed

Wong, Frances Kam Yuet; So, Ching; Ng, Alina Yee Man; Lam, Po-Tin; Ng, Jeffrey Sheung Ching; Ng, Nancy Hiu Yim; Chau, June; Sham, Michael Mau Kwong

2018-02-01

Studies have shown positive clinical outcomes of specialist palliative care for end-stage heart failure patients, but cost-effectiveness evaluation is lacking. To examine the cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure patients as compared to the customary palliative care service. A cost-effectiveness analysis was conducted alongside a randomized controlled trial (Trial number: NCT02086305). The costs included pre-program training, intervention, and hospital use. Quality of life was measured using SF-6D. The study took place in three hospitals in Hong Kong. The inclusion criteria were meeting clinical indicators for end-stage heart failure patients including clinician-judged last year of life, discharged to home within the service area, and palliative care referral accepted. A total of 84 subjects (study = 43, control = 41) were recruited. When the study group was compared to the control group, the net incremental quality-adjusted life years gain was 0.0012 (28 days)/0.0077 (84 days) and the net incremental costs per case was -HK$7935 (28 days)/-HK$26,084 (84 days). The probability of being cost-effective was 85% (28 days)/100% (84 days) based on the cost-effectiveness thresholds recommended both by National Institute for Health and Clinical Excellence (£20,000/quality-adjusted life years) and World Health Organization (Hong Kong gross domestic product/capita in 2015, HK$328117). Results suggest that a transitional home-based palliative care program is more cost-effective than customary palliative care service. Limitations of the study include small sample size, study confined to one city, clinic consultation costs, and societal costs including patient costs and unpaid care-giving costs were not included.

Embedding a Palliative Approach in Nursing Care Delivery

PubMed Central

Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally

2017-01-01

A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401

Palliative care in Japan: a review focusing on care delivery system.

PubMed

Morita, Tatsuya; Kizawa, Yoshiyuki

2013-06-01

Providing palliative care in Japan is one of the most important health issues. Understanding palliative care delivery systems of other countries is useful when developing and modifying palliative care systems worldwide. This review summarizes the current status of palliative care in Japan, focusing on the structure and process development. Palliative care units and hospital palliative care consultation teams are the two main specialized palliative care services in Japan. The number of palliative care units is 215 (involved in 8.4% of all cancer deaths), and there are approximately 500 hospital palliative care teams. Conversely, specialized home care services are one of the most undeveloped areas in Japan. However, the government has been trying to develop more efficient home care services through modifying laws, healthcare systems, and multiple educational and cooperative projects. The numbers of palliative care specialists are increasing across all disciplines: cancer pain nurses (1365), palliative care nurses (1100), palliative care physicians (646), and palliative care pharmacists (238). Postgraduate education for physicians is performed via the special nationwide efforts of the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) project - a 2-day program adopting a trainer-trainee strategy. Over 30,000 physicians have participated in the PEACE program. A total of 1298 and 544 physicians have completed a trainer course for palliative medicine and psycho-oncology, respectively. Multiple structure and process evaluation, bereaved family surveys in palliative care units, and patient and family evaluation in the regional palliative care program indicate many improvements. Palliative care in Japan has progressed rapidly, and the Cancer Control Act has played a very important role in developing palliative medicine. Challenges include developing a structure for palliative care in the community or regional

Training Physicians in Palliative Care.

ERIC Educational Resources Information Center

Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.

1999-01-01

Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)

Update in Hospice and Palliative Care.

PubMed

Gray, Nathan A; Horton, Jay R; Dionne-Odom, J Nicholas; Smith, Cardinale B; Johnson, Kimberly S

2016-05-01

The goal of this update in hospice and palliative care is to summarize and critique research published between January 1 and December 31, 2014 that has a high potential for impact on clinical practice. To identify articles we hand searched 22 leading journals, the Cochrane Database of Systematic Reviews, and Fast Article Critical Summaries for Clinicians in Palliative Care. We also performed a PubMed keyword search using the terms "hospice" and "palliative care." We ranked candidate articles based on study quality, appeal to a breadth of palliative care clinicians, and potential for impact on clinical practice. In this manuscript we have summarized the findings of eight articles with the highest ratings and make recommendations for clinical practice based on the strength of the resulting evidence.

A National Palliative Care Strategy for Canada

PubMed Central

2017-01-01

Abstract Objective: To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada. Background: In 2014, the World Health Organization called on members to develop and implement policies to ensure palliative care is integrated into national health services. Methods: Rapid review supplemented by the author's personal files, outreach to colleagues within the international palliative care community, review of European Association for Palliative Care publications, and a subsequent search of the table of contents of the major palliative care journals. Results: Frameworks were found for 10 countries ranging from detailed and comprehensive multi-year strategies to more general approaches including laws guaranteeing access to palliative care services for “dying” patients or recommendations for the development of clinical infrastructure. Few formal evaluations were found minimal comparative data exist regarding the quality of care, access to palliative care services, timing of access in the disease trajectory, and patient and family satisfaction with care. Factors that appear to be associated with success include: 1) input and early involvement of senior policy makers; 2) comprehensive strategies that address major barriers to universal access and that involve the key constituents; 3) a focus on enhancing the evidence base and developing a national system of quality reporting; and 4) substantial and sustained government investment. Discussion: Comprehensive national strategies appear to improve access to high quality palliative care for persons with serious illness and their families. Such strategies require sustained government funding and address barriers related to infrastructure, professional and public education, workforce shortages, and an inadequate

Is Palliative Care Right for You?

MedlinePlus

... For Family Caregivers Glossary Menu Is Palliative Care Right for You? Answer the following questions to determine whether palliative care might be right for you or someone close to you. Remember, ...

Defining palliative care in cystic fibrosis: A Delphi study.

PubMed

Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K

2018-05-01

The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Palliative sedation, not slow euthanasia: a prospective, longitudinal study of sedation in Flemish palliative care units.

PubMed

Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert

2011-01-01

Palliative sedation remains a much debated and controversial issue. The limited literature on the topic often fails to answer ethical questions concerning this practice. The aim of this study was to describe the characteristics of patients who are being sedated for refractory symptoms in palliative care units (PCUs) from the time of admission until the day of death. A prospective, longitudinal, descriptive design was used to assess data in eight PCUs. The total sample consisted of 266 patients. Information on demographics, medication, food and fluid intake, decision making, level of consciousness, and symptom experience were gathered by nurses and researchers three times a week. If patients received palliative sedation, extra information was gathered. Of all included patients (n=266), 7.5% received palliative sedation. Sedation started, on average, 2.5 days before death and for half of these patients, the form of sedation changed over time. At the start of sedation, patients were in the end stage of their illness and needed total care. Patients were fully conscious and had very limited oral food or fluid intake. Only three patients received artificial fluids at the start of sedation. Patients reported, on average, two refractory symptoms, the most important ones being pain, fatigue, depression, drowsiness, and loss of feeling of well-being. In all cases, the patient gave consent to start palliative sedation because of increased suffering. This study revealed that palliative sedation is only administered in exceptional cases where refractory suffering is evident and for those patients who are close to the ends of their lives. Moreover, this study supports the argument that palliative sedation has no life-shortening effect. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Palliative Care in Advanced Cancer Patients: How and When?

PubMed Central

Yennurajalingam, Sriram

2012-01-01

Cancer patients develop severe physical and psychological symptoms as a result of their disease and treatment. Their families commonly suffer great emotional distress as a result of caregiving. Early palliative care access can improve symptom control and quality of life and reduce the cost of care. Preliminary results show that early palliative care access can also extend survival. Unfortunately, only a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units. In this article, we use a case presentation to discuss the impact of early palliative care access in light of the currently available evidence, and we recommend ways to improve early access to palliative care through education and research. PMID:22252934

Current Status of Palliative Care, Education, and Research

PubMed Central

Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.

2010-01-01

Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. PMID:19729681

Team Networking in Palliative Care

PubMed Central

Spruyt, Odette

2011-01-01

“If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology.

PubMed

Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael

2017-09-01

Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

The potential of palliative care for patients with respiratory diseases

PubMed Central

Narsavage, Georgia L.; Chen, Yea-Jyh; Korn, Bettina; Elk, Ronit

2017-01-01

Based on the demonstrated effectiveness of palliative care in the alleviation of symptoms and enhancement of life quality, it is important to incorporate palliative care early in the respiratory disease trajectory. Quality palliative care addresses eight domains that are all patient and family centred. Palliative care interventions in respiratory conditions include management of symptoms such as dyspnoea, cough, haemoptysis, sputum production, fatigue and respiratory secretion management, especially as the end-of-life nears. A practical checklist of activities based on the domains of palliative care can assist clinicians to integrate palliative care into their practice. Clinical management of patients receiving palliative care requires consideration of human factors and related organisational characteristics that involve cultural, educational and motivational aspects of the patient/family and clinicians. Educational aims To explain the basic domains of palliative care applicable to chronic respiratory diseases. To review palliative care interventions for patients with chronic respiratory diseases. To outline a checklist for clinicians to use in practice, based on the domains of palliative care. To propose recommendations for clinical management of patients receiving palliative care for chronic respiratory diseases. PMID:29209422

Community pharmacists' attitudes toward palliative care: an Australian nationwide survey.

PubMed

O'Connor, Moira; Hewitt, Lauren Y; Tuffin, Penelope H R

2013-12-01

Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. A cross-sectional descriptive survey design was used. Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted--and therefore underpinned--a positive attitude towards palliative care and the provision of services and supports for palliative care patients. The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on.

Danish Palliative Care Database.

PubMed

Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

2016-01-01

The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010-2014. Of those registered, 96% had cancer. DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness.

At-home palliative sedation for end-of-life cancer patients.

PubMed

Alonso-Babarro, Alberto; Varela-Cerdeira, Maria; Torres-Vigil, Isabel; Rodríguez-Barrientos, Ricardo; Bruera, Eduardo

2010-07-01

Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.

Assessment of a Statewide Palliative Care Team Training Course: COMFORT Communication for Palliative Care Teams.

PubMed

Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith

2016-07-01

Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication

VALUE: A trans-disciplinary research project - and some challenges in its implementation

NASA Astrophysics Data System (ADS)

Huebener, Heike

2013-04-01

The EU-COST-action VALUE ("Validating and Integrating Downscaling Methods for Climate Change Research") is composed as a trans-disciplinary network activity, meaning that stakeholders and end-users not only from different scientific disciplines (i.e. inter-disciplinary research) but also from outside science are included in the design, planning and progress of the project. This gives the optimal chance to produce really workable project results for the intended end-users. However, some considerable challenges lie this way. These challenges start with identifying and motivating the target-stakeholders, they cover communication in different user-specific languages and reach as far as the question of the freedom of research when under the prompting of politics or economy. We will cover only some of the mentioned challenges; focusing on the identification of the target-stakeholders or end-users, their motivation to participate in the project and on some typical problems arising in this constellation. First experiences from the project will be presented. The aim of the presentation is to instigate discussion on developing workable project structures for trans-disciplinary research, as this will become more and more relevant in future research funding.

A Transdisciplinary Approach to Training: Preliminary Research Findings Based on a Case Analysis

ERIC Educational Resources Information Center

Bimpitsos, Christos; Petridou, Eugenia

2012-01-01

Purpose: The purpose of this paper is to discuss the benefits, barriers and challenges of the transdisciplinary approach to training, and to present findings of a case analysis. Design/methodology/approach: The paper is based on the research findings of an experimental training program for Greek local government managers co-funded by the European…

Social transformation in transdisciplinary natural hazard management

NASA Astrophysics Data System (ADS)

Attems, Marie-Sophie; Fuchs, Sven; Thaler, Thomas

2017-04-01

Due to annual increases of natural hazard losses, there is a discussion among authorities and communities in Europe on innovative solutions to increase resilience, and consequently, business-as-usual in risk management practices is often questioned. Therefore, the current situation of risk management requests a societal transformation to response adequately and effectively to the new global dynamics. An emerging concept is the implementation of multiple-use mitigation systems against hazards such as floods, avalanches and land-slides. However, one key aspect refers to the involvement of knowledge outside academic research. Therefore, transdisciplinary knowledge can be used to discuss vital factors which are needed to upscale the implementation of multiple-use mitigation measures. The method used in this contribution is an explorative scenario analysis applied in Austria and processes the knowledge gained in transdisciplinary workshops. The scenario analysis combines qualitative data and the quantitative relations in order to generate a set of plausible future outcomes. The goal is to establish a small amount of consistent scenarios, which are efficient and thereby representative as well as significantly different from each other. The results of the discussions among relevant stakeholders within the workshops and a subsequent quantitative analysis, showed that vital variables influencing the multiple use of mitigation measures are the (1) current legislation, (2) risk acceptance among authorities and the public, (3) land-use pressure, (4) the demand for innovative solutions, (5) the available technical standards and possibilities and (6) finally the policy entrepreneurship. Four different scenarios were the final result of the analysis. Concluding the results, in order to make multiple-use alleviations systems possible contemporary settings concerning risk management strategies will have to change in the future. Legislation and thereby current barriers have to be

[Combined palliative hypofractionated radiation and carboplatin chemotherapy of intranasal tumours in dogs].

PubMed

Schwietzer, A; Kessler, M; Kandel-Tschiederer, B

2012-10-17

Combination therapy of intranasal tumours in dogs with palliative 60 cobalt radiation and carboplatin chemotherapy. Twenty-five dogs with intranasal tumours were treated in the Hofheim Veterinary Hospital (Germany) from 2004 to 2006 with a total radiation dose of 24Gy (3 fractions of 8 Gy on days 0, 7 and 21) and five doses of Carboplatin (270-300 mg/m² BSA i.v. every 21-28 days). In 88% patients, clinical symptoms subsided partially or completely resulting in improvement in quality of life. Computed tomography revealed partial (5/25) or complete (5/25) tumour remissions. Chemotherapy was well tolerated. Radiation therapy caused no or minimal side effects except for 3 dogs (12%), which experienced serious ocular side effects resulting in loss of vision of the affected eye and one dog with epileptic seizures. Survival times ranged from 10-639 days with a median of 156 days. There was no statistically significant correlation between the parameters breed, age, sex, brain invasion or tumour stage and survival time or progression free interval. Survival time and progression free interval were significantly correlated with the degree of tumour remission. It can be concluded from this study that palliative radiation therapy combined with chemotherapy results in excellent palliation of clinical symptoms and acceptable survival times. There was no advantage of combined therapy (radiation with carboplatin) when compared to literature data on results of radiation therapy alone.

Enhancing Palliative Care Education in Medical School Curricula: Implementation of the Palliative Education Assessment Tool.

ERIC Educational Resources Information Center

Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.

2002-01-01

Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…

Commissioning of specialist palliative care services in England.

PubMed

Lancaster, Harriet; Finlay, Ilora; Downman, Maxwell; Dumas, James

2018-03-01

Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Conceptual foundations of a palliative approach: a knowledge synthesis.

PubMed

Sawatzky, Richard; Porterfield, Pat; Lee, Joyce; Dixon, Duncan; Lounsbury, Kathleen; Pesut, Barbara; Roberts, Della; Tayler, Carolyn; Voth, James; Stajduhar, Kelli

2016-01-15

Much of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A "palliative approach" has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity. We conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to "palliative care" and "chronic life-limiting conditions" were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach. The following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care. Our findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach

Quality Measures for Hospice and Palliative Care: Piloting the PEACE Measures

PubMed Central

Rokoske, Franziska S.; Durham, Danielle; Cagle, John G.; Hanson, Laura C.

2014-01-01

Abstract Background: The Carolinas Center for Medical Excellence launched the PEACE project in 2006, under contract with the Centers for Medicare & Medicaid Services (CMS), to identify, develop, and pilot test quality measures for hospice and palliative care programs. Objectives: The project collected pilot data to test the usability and feasibility of potential quality measures and data collection processes for hospice and palliative care programs. Settings/subjects: Twenty-two hospices participating in a national Quality Improvement Collaborative (QIC) submitted data from 367 chart reviews for pain care and 45 chart reviews for nausea care. Fourteen additional hospices completed a one-time data submission of 126 chart reviews on 60 potential patient-level quality measures across eight domains of care and an organizational assessment evaluating structure and processes of care. Design: Usability was assessed by examining the range, variability and size of the populations targeted by each quality measure. Feasibility was assessed during the second pilot study by surveying data abstractors about the abstraction process and examining the rates of missing data. The impact of data collection processes was assessed by comparing results obtained using different processes. Results: Measures shown to be both usable and feasible included: screening for physical symptoms on admission and documentation of treatment preferences. Methods of data collection and measure construction appear to influence observed rates of quality of care. Conclusions: We successfully identified quality measures with potential for use in hospices and palliative care programs. Future research is needed to understand whether these measures are sensitive to quality improvement interventions. PMID:24921162

The burgeoning field of transdisciplinary adaptation research in Quebec (1998–): a climate change-related public health narrative

PubMed Central

Gosselin, Pierre; Bélanger, Diane; Lapaige, Véronique; Labbé, Yolaine

2011-01-01

This paper presents a public health narrative on Quebec’s new climatic conditions and human health, and describes the transdisciplinary nature of the climate change adaptation research currently being adopted in Quebec, characterized by the three phases of problem identification, problem investigation, and problem transformation. A transdisciplinary approach is essential for dealing with complex ill-defined problems concerning human–environment interactions (for example, climate change), for allowing joint research, collective leadership, complex collaborations, and significant exchanges among scientists, decision makers, and knowledge users. Such an approach is widely supported in theory but has proved to be extremely difficult to implement in practice, and those who attempt it have met with heavy resistance, succeeding when they find the occasional opportunity within institutional or social contexts. In this paper we narrate the ongoing struggle involved in tackling the negative effects of climate change in multi-actor contexts at local and regional levels, a struggle that began in a quiet way in 1998. The paper will describe how public health adaptation research is supporting transdisciplinary action and implementation while also preparing for the future, and how this interaction to tackle a life-world problem (adaptation of the Quebec public health sector to climate change) in multi-actors contexts has progressively been established during the last 13 years. The first of the two sections introduces the social context of a Quebec undergoing climate changes. Current climatic conditions and expected changes will be described, and attendant health risks for the Quebec population. The second section addresses the scientific, institutional and normative dimensions of the problem. It corresponds to a “public health narrative” presented in three phases: (1) problem identification (1998–2002) beginning in northern Quebec; (2) problem investigation (2002–2006

Plasticity as a Framing Concept Enabling Transdisciplinary Understanding and Research in Neuroscience and Education

ERIC Educational Resources Information Center

García Carrasco, Joaquín; Hernández Serrano, María Jose; Martín García, Antonio Victor

2015-01-01

This article examines the emerging literature on the need for a synergy between neuroscience and educational sciences, identifying several differences in approach and methods that hinder the connecting processes between these two disciplines. From this review a transdisciplinary framework is presented which is based on the systemic and lifelong…

Community Pharmacists' Attitudes Toward Palliative Care: An Australian Nationwide Survey

PubMed Central

Hewitt, Lauren Y.; Tuffin, Penelope H.R.

2013-01-01

Abstract Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. Method: A cross-sectional descriptive survey design was used. Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted—and therefore underpinned—a positive attitude towards palliative care and the provision of services and supports for palliative care patients. Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on. PMID:24147876

Palliative Care in Vietnam: Long-Term Partnerships Yield Increasing Access.

PubMed

Krakauer, Eric L; Thinh, Dang Huy Quoc; Khanh, Quach Thanh; Huyen, Hoang Thi Mong; Tuan, Tran Diep; The, Than Ha Ngoc; Cuong, Do Duy; Thuan, Tran Van; Yen, Nguyen Phi; Van Anh, Pham; Cham, Nguyen Thi Phuong; Doyle, Kathleen P; Yen, Nguyen Thi Hai; Khue, Luong Ngoc

2018-02-01

Palliative care began in Vietnam in 2001, but steady growth in palliative care services and education commenced several years later when partnerships for ongoing training and technical assistance by committed experts were created with the Ministry of Health, major public hospitals, and medical universities. An empirical analysis of palliative care need by the Ministry of Health in 2006 was followed by national palliative care clinical guidelines, initiation of clinical training for physicians and nurses, and revision of opioid prescribing regulations. As advanced and specialist training programs in palliative care became available, graduates of these programs began helping to establish palliative care services in their hospitals. However, community-based palliative care is not covered by government health insurance and thus is almost completely unavailable. Work is underway to test the hypothesis that insurance coverage of palliative home care not only can improve patient outcomes but also provide financial risk protection for patients' families and reduce costs for the health care system by decreasing hospital admissions near the end of life. A national palliative care policy and strategic plan are needed to maintain progress toward universally accessible cost-effective palliative care services. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Can elearning be used to teach palliative care? - medical students' acceptance, knowledge, and self-estimation of competence in palliative care after elearning.

PubMed

Schulz-Quach, Christian; Wenzel-Meyburg, Ursula; Fetz, Katharina

2018-04-27

Undergraduate palliative care education (UPCE) was mandatorily incorporated in medical education in Germany in 2009. Implementation of the new cross-sectional examination subject of palliative care (QB13) continues to be a major challenge for medical schools. It is clear that there is a need among students for more UPCE. On the other hand, there is a lack of teaching resources and patient availabilities for the practical lessons. Digital media and elearning might be one solution to this problem. The primary objective of this study is to evaluate the elearning course Palliative Care Basics, with regard to students' acceptance of this teaching method and their performance in the written examination on the topic of palliative care. In addition, students' self-estimation in competence in palliative care was assessed. To investigate students' acceptance of the elearning course Palliative Care Basics, we conducted a cross-sectional study that is appropriate for proof-of-concept evaluation. The sample consisted of three cohorts of medical students of Heinrich Heine University Dusseldorf (N = 670). The acceptance of the elearning approach was investigated by means of the standard evaluation of Heinrich Heine University. The effect of elearning on students' self-estimation in palliative care competencies was measured by means of the German revised version of the Program in Palliative Care Education and Practice Questionnaire (PCEP-GR). The elearning course Palliative Care Basics was well-received by medical students. The data yielded no significant effects of the elearning course on students' self-estimation in palliative care competencies. There was a trend of the elearning course having a positive effect on the mark in written exam. Elearning is a promising approach in UPCE and well-accepted by medical students. It may be able to increase students' knowledge in palliative care. However, it is likely that there are other approaches needed to change students' self

Integrating palliative care into disease management guidelines.

PubMed

Emanuel, Linda; Alexander, Carla; Arnold, Robert M; Bernstein, Richard; Dart, Richard; Dellasantina, Christopher; Dykstra, Lee; Tulsky, James

2004-12-01

Palliative care should not be reserved for those who are close to dying; as a comprehensive approach to minimizing illness-related suffering, it is appropriate for patients with significant illness from the time of diagnosis on. The American Hospice Foundation Guidelines Committee's initiative aims to provide a practical approach for guideline writers and others to integrate palliative care into disease management and care services whenever it is relevant. A consensus approach was used to design recommendations for upgrading existing disease management and service guidelines to include palliative care. A template is described for identifying stages in disease management guidelines when integration of palliative care is appropriate: (1) Introductory sections to disease management guidelines should include prognosis and other disease consequences; (2) Diagnostic sections should include recommendations for conducting a whole patient assessment; (3) Treatment sections should include discernment of patient goals for care, continuous goal reassessment, palliative care interventions to reduce suffering as needed, and treatment decisions should include discussion of the type of expected improvement. Service guidelines should note the role of interdisciplinary team care as well as palliative care consultative or care services; (4) Sections that conclude the care provided to incurable patients should not end without recommendations on grief and bereavement care, and care during the last hours of living. The American Hospice Foundation Guidelines Committee recommends integration of relevant aspects of palliative care in introductory, diagnostic, treatment, and closing sections of management guidelines for all significant illnesses.

An Innovative Role for Faith Community Nursing: Palliative Care Ministry.

PubMed

Lentz, Judy C

Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities.

Sustainability from the Transdisciplinary Perspective: An Action Research Strategy for Continuing Education Program Development

ERIC Educational Resources Information Center

Salite, lga; Drelinga, Elga; Iliško, Dzintra; Olehnovica, Eridiana; Zarina, Sandra

2016-01-01

The need to focus on a transdisciplinary approach in education for sustainable development (EDS) has been reflected in research and especially action research as a possible solution, which can open a new perspective for understanding and interpretation of the complex phenomenon of sustainability as well as for developing new open continuing…

Late referral to palliative care services in Korea.

PubMed

Baek, Young Ji; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Mo, Ha Na; Kim, Yang Hyeok; Kim, Sohee; Jung, Kyu Won; Joo, Jisoo; Park, Eun-Cheol

2011-04-01

Although timely referral to palliative care services can help improve quality of life by minimizing patient and family suffering during a life-threatening illness, it remains unclear whether patients in Korea who suffer from advanced cancer are referred to palliative care services in a timely manner. We aimed to investigate the timeliness of patient referral to palliative care services in Korea by examining the duration of survival after enrollment and identify the factors contributing to earlier or later referral. Patient- and episode-level data were collected from 3867 terminal cancer patients, who were registered in 34 inpatient palliative care services designated by the Ministry of Health, Welfare, and Family Affairs. Cox proportional hazard models were used to determine factors associated with the duration of survival after enrollment in palliative care services. The median duration of survival after enrollment in palliative care services was 18 days. Male sex, liver cancer diagnosis, poor performance status, being covered by National Health Insurance, and being married were significantly associated with shorter duration of survival after enrollment, whereas a prostate cancer diagnosis was associated with longer survival. Korean terminal cancer patients are referred to palliative care very late, and the timing appears to be influenced by some socioeconomic and medical factors. Interventions, such as physician education and establishing palliative care teams, are required to promote earlier referrals in Korea. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Integrating Palliative Care Into Comprehensive Cancer Centers: Consensus-Based Development of Best Practice Recommendations

PubMed Central

Stiel, Stephanie; Simon, Steffen T.; Schmitz, Andrea; van Oorschot, Birgitt; Stachura, Peter; Ostgathe, Christoph

2016-01-01

Background. International associations admit that specialized palliative care (SPC) is an obvious component of excellent cancer care. Nevertheless, gaps in integration at the international level have been identified. Recommendations for integrating SPC in clinical care, research, and education are needed, which are subject of the present study. Materials and Methods. A Delphi study, with three written Delphi rounds, including a face-to-face-meeting with a multiprofessional expert panel (n = 52) working in SPC in 15 German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid was initiated. Initial recommendations are built on evidence-based literature. Consensus was defined in advance with ≥80% agreement based on the question of whether each recommendation was unambiguously formulated, relevant, and realizable for a CCC. Results. A total of 38 experts (73.1%) from 15 CCCs performed all three Delphi rounds. Consensus was achieved for 29 of 30 recommendations. High agreement related to having an organizationally and spatially independent palliative care unit (≥6 beds), a mobile multiprofessional SPC team, and cooperation with community-based SPC. Until round 3, an ongoing discussion was registered on hospice volunteers, a chair of palliative care, education in SPC among staff in emergency departments, and integration of SPC in decision-making processes such as tumor boards or consultation hours. Integration of SPC in decision-making processes was not consented by a low-rated feasibility (76.3%) due to staff shortage. Conclusion. Recommendations should be considered when developing standards for cancer center of excellence in Germany. Definition and implementation of indicators of integration of SPC in CCCs and evaluation of its effectiveness are current and future challenges. Implications for Practice: General and specialized palliative care (SPC) is an integral part of comprehensive cancer care. However, significant diversity concerning the design

Growing Pains: Palliative Care Making Gains

Cancer.gov

Palliative care has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care. The availability and role of palliative care varies tremendously, but acceptance among oncologists and other clinicians has never been greater.

Palliative Care

MedlinePlus

Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...

A Call for Integrated and Coordinated Palliative Care

PubMed Central

2017-01-01

Abstract Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not have access to regional, comprehensive, integrated palliative care. Work needs to be directed toward planning palliative care services that is integrated into the healthcare and social care system. To further this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care. PMID:29283874

The Changing Role of Palliative Care in the ICU

PubMed Central

Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.

2015-01-01

Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and

[Organization of palliative medicine in the clinic and ambulatory care].

PubMed

Jonen-Thielemann, I

1998-01-01

To describe the idea of palliative medicine and its forms of organization in the inpatient and outpatient sectors, and in particular to describe the projects for palliative medicine at the University of Cologne, specifying costs and the 1996 statistics of the palliative care unit. Palliative medicine comprises the alleviative treatment, nursing and accompaniment of the incurably ill in the far advanced stage of disease, including the physical, mental, psychic, spiritual and social domains. The underlying concept is "to live until you die" and dying in dignity at the natural end of life. Facilities for palliative medicine in the hospital: palliative care unit, palliative care sector, palliative care consultation service; forms of organization in the outpatient sector: home care service, domiciliary palliative care service and outpatient hospice; independent facilities: hospices-inpatient and part-inpatient. Costs of palliative treatment in the projects of the University of Cologne: palliative care unit: 457.33 DM for one patient per day, 12,092.20 DM average costs per patient admission in 1996 (n = 186); home care service: 200.00 DM flat rate per patient per day; inpatient hospice in Cologne-Heimersdorf: 300.00 DM for one patient per day (home care service and hospice entail additional costs for medical treatment, medication and nursing accessories). Palliative medicine is expensive; only a few patients have the benefit of this; relatives may suppose to be relieved of the burden of their responsibilities; however: the severely ill and dying patients of the hospital experience the best possible care at home or in a "family atmosphere"; gain in experience of palliative medicine and multiplier function, research; awaking our society to thoughts of their own hour of death and what comes after it.

Palliative Care Eases Symptoms, Enhances Lives

MedlinePlus

... and more emotional support. Read More "Palliative Care" Articles Increasing the quality of life for patients and families… / Video Tells a Mother's Story of Caring Support / Palliative Care Eases Symptoms, Enhances Lives Spring 2014 Issue: ... Viewers & Players Friends of the National Library of Medicine (FNLM)

A palliative approach for heart failure end-of-life care

PubMed Central

Maciver, Jane; Ross, Heather J.

2018-01-01

Purpose of review The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care. Recent findings North American and European heart failure societies recommend the integration of palliative care into heart failure programs. Advance care planning, shared decision-making, routine measurement of symptoms and quality of life and specialist palliative care at heart failure EOL are identified as key components to an effective heart failure palliative care program. There is limited evidence to support the effectiveness of the individual elements. However, results from the palliative care in heart failure trial suggest an integrated heart failure palliative care program can significantly improve quality of life for heart failure patients at EOL. Summary Integration of a palliative approach to heart failure EOL care helps to ensure patients receive the care that is congruent with their values, wishes and preferences. Specialist palliative care referrals are limited to those who are truly at heart failure EOL. PMID:29135524

Improving palliative care through effective communication.

PubMed

Wallace, P

2001-02-01

Effective communication in palliative care is instrumental in the development of the therapeutic relationship that should exist between patients and nurses, and the importance of it is well recognized by nurses working in this specialist practice area. This article examines the reason behind the need for effective communication, identifies systems of communication and explores the influence and value of contemporary communication theories and models in palliative care. It recommends that palliative care nurses develop a framework that will facilitate and give structure to the interview process with the aim of alleviating anxieties, encouraging situational control and promoting quality of life for patients.

Development of Palliative Care in China: A Tale of Three Cities.

PubMed

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo; Hui, David

2017-11-01

China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were

Development of Palliative Care in China: A Tale of Three Cities

PubMed Central

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo

2017-01-01

Abstract Background. China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Methods. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. Results. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient‐based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Conclusion. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. Implications for Practice. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three

[Palliative care pathways of older patients].

PubMed

Zubieta, Lourdes; Hébert, Réjean; Raîche, Michel

To determine the palliative care pathways of older patients in Sherbrooke, Qc by examining their transfers to other facilities. This analysis was conducted by linking 3 databases: emergency department, hospitalizations and nursing homes. The study period ranged from January 2011 to December 2015. SPSS was used for statistical analysis. The study only included palliative care patients. 25% of patients waited less than 7 days for transfer, and 74% waited less than 3 weeks. 64.9% of patients were transferred to a long-term facility for dependent adults (LTF), 15.2% returned home or were transferred to private accommodation, and 15.9% were transferred to an intermediate care facility. One-half of patients subsequently changed facility, mainly those in homes or intermediate care. Palliative care patient bed occupation rates represented 1% of available bed-days and less than 2% of total beds for 86.4% of days. Only 12% of patients returned to hospital within 90 days after discharge. The number of beds occupied by palliative care patients does not seem to disrupt the hospital capacity. The majority of the palliative care patients were well managed, as reflected by the low readmission rate. Our results indicate good management of transfers and an adequate supply of long-term care facilities and home services.

Intent, Future, Anticipation: A Semiotic, Transdisciplinary Approach

NASA Astrophysics Data System (ADS)

Loeckenhoff, Hellmut

2008-10-01

Encouraged e.g. by chaos theory and (bio-)semiotics science is trying to attempt a deeper understanding of life. The paradigms of physics alone prove not sufficient to explain f. ex. evolution or phylogenesis and ontogenesis. In complement, research on life systems reassesses paradigmatic models not only for living systems and not only on the strict biological level. The ontological as well as the epistemological base of science in toto is to be reconsidered. Science itself proves a historical and cultural phenomenon and can be seen as shaped by evolution and semiosis. -Living systems are signified by purpose, intent and, necessarily, by the faculty to anticipate e.g. the cyclic changes of their environment. To understand the concepts behind a proposal is developed towards a model set constituting a transdisciplinary approach. It rests e.g. on concepts of systems, evolution, complexity and semiodynamics.

Palliative Care

MedlinePlus

... a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with serious illness. ...

Inpatient Palliative Care Consultation and 30-Day Readmissions in Oncology.

PubMed

DiMartino, Lisa D; Weiner, Bryan J; Hanson, Laura C; Weinberger, Morris; Birken, Sarah A; Reeder-Hayes, Katherine; Trogdon, Justin G

2018-01-01

Prior research indicates that hospice and palliative care delivered in outpatient settings are associated with reduced hospital readmissions for cancer patients. However, little is known about how inpatient palliative care affects readmissions in oncology. To examine associations among inpatient palliative care consultation, hospice use (discharge), and 30-day readmissions among patients with solid tumor cancers. We identified all live discharges from a large tertiary cancer hospital between 2010 and 2016. Palliative care consult data were abstracted from medical charts and linked to hospital encounter data. Propensity scores were used to match palliative care consult to usual care encounters. Modified Poisson regression models estimated adjusted relative risk (aRR) and 95% confidence intervals (CI) of 30-day readmissions and hospice discharge. We compared predicted probabilities of readmission for palliative care consultation with hospice discharge, without hospice discharge, and usual care. Of 8085 eligible encounters, 753 involved a palliative care consult. The likelihood of having a 30-day readmission did not differ between palliative care consult and usual care groups (p > 0.05). However, the palliative care consult group was more likely than usual care to have a hospice discharge (aRR = 4.09, 95% CI: 3.07-5.44). The predicted probability of 30-day readmission was lower when palliative care consultation was combined with hospice discharge compared to usual care or consultation with discharge to nonhospice postacute care (p < 0.001). The effect of inpatient palliative care on readmissions in oncology is largely driven by hospice enrollment. Strategies that combine palliative care consultation with hospice discharge may decrease hospital readmissions and improve cancer care quality.

Challenges in Transdisciplinary, Integrated Projects: Reflections on the Case of Faculty Members' Failure to Collaborate

ERIC Educational Resources Information Center

Vanasupa, Linda; McCormick, Kathryn E.; Stefanco, Carolyn J.; Herter, Roberta J.; McDonald, Margot

2012-01-01

In this article we describe the challenges of transdisciplinary teamwork involving four faculty members from dissimilar epistemological traditions in the process of developing a manuscript on the lessons learned in our teaching collaboration. Our difficulty originated in implicit mental models and assumptions that caused incongruence between our…

Trends of earlier palliative care consultation in advanced cancer patients receiving palliative radiation therapy.

PubMed

Chang, Sanders; Sigel, Keith; Goldstein, Nathan E; Wisnivesky, Juan; Dharmarajan, Kavita V

2018-06-06

The American Society of Clinical Oncology recommends that all patients with metastatic disease receive dedicated palliative care (PC) services early in their illness, ideally via interdisciplinary care teams. We investigated the time trends of specialty palliative care consultations from the date of metastatic cancer diagnosis among patients receiving palliative radiation therapy (PRT). A shorter time interval between metastatic diagnosis and first PC consultation suggests earlier involvement of palliative care in a patient's life with metastatic cancer. In this IRB-approved retrospective analysis, patients treated with PRT for solid tumors (bone and brain) at a single tertiary care hospital between 2010 and 2016 were included. Cohorts were arbitrarily established by metastatic diagnosis within approximately two-year intervals: (1) 1/1/2010-3/27/2012; (2) 3/28/2012-5/21/2014; and (3) 5/22/2014-12/31/2016. Cox-proportional hazards regression modelling was used to compare trends of PC consultation among cohorts. Of 284 patients identified, 184 patients received PC consultation, whereas 15 patients died before receiving a PC consult. Median follow-up time until an event or censor was 257 days (range: 1,900). Patients in the most recent cohort had a shorter median time to first PC consult (57 days) compared to those in the first (374 days) and second (186 days) cohorts. On multivariable analysis, patients in the third cohort were more likely to undergo a PC consultation earlier in their metastatic illness (HR: 1.8, 95% CI: 1.2,2.8). Over a six-year period, palliative care consultation occurred earlier for metastatic patients treated with PRT at our institution. Copyright © 2018. Published by Elsevier Inc.

[eLearning service for home palliative care].

PubMed

Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu

2008-12-01

In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids.

How are physicians delivering palliative care? A population-based retrospective cohort study describing the mix of generalist and specialist palliative care models in the last year of life.

PubMed

Brown, Catherine Rl; Hsu, Amy T; Kendall, Claire; Marshall, Denise; Pereira, Jose; Prentice, Michelle; Rice, Jill; Seow, Hsien-Yeang; Smith, Glenys A; Ying, Irene; Tanuseputro, Peter

2018-06-01

To enable coordinated palliative care delivery, all clinicians should have basic palliative care skill sets ('generalist palliative care'). Specialists should have skills for managing complex and difficult cases ('specialist palliative care') and co-exist to support generalists through consultation care and transfer of care. Little information exists about the actual mixes of generalist and specialist palliative care. To describe the models of physician-based palliative care services delivered to patients in the last 12 months of life. This is a population-based retrospective cohort study using linked health care administrative data. Physicians providing palliative care services to a decedent cohort in Ontario, Canada. The decedent cohort consisted of all adults (18+ years) who died in Ontario, Canada between April 2011 and March 2015 ( n = 361,951). We describe four major models of palliative care services: (1) 53.0% of decedents received no physician-based palliative care, (2) 21.2% received only generalist palliative care, (3) 14.7% received consultation palliative care (i.e. care from both specialists and generalists), and (4) 11.1% received only specialist palliative care. Among physicians providing palliative care ( n = 11,006), 95.3% had a generalist palliative care focus and 4.7% a specialist focus; 74.2% were trained as family physicians. We examined how often a coordinated palliative care model is delivered to a large decedent cohort and identified that few actually received consultation care. The majority of care, in both the palliative care generalist and specialist models, was delivered by family physicians. Further research should evaluate how different models of care impact patient outcomes and costs.

An instrument to measure nurses' knowledge in palliative care: Validation of the Spanish version of Palliative Care Quiz for Nurses

PubMed Central

2017-01-01

Background Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN) is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking. Purpose To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. Method The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV) was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT). Findings Adequate internal consistency was found (S-CVI = 0.83); Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents. Discussion Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the

An instrument to measure nurses' knowledge in palliative care: Validation of the Spanish version of Palliative Care Quiz for Nurses.

PubMed

Chover-Sierra, Elena; Martínez-Sabater, Antonio; Lapeña-Moñux, Yolanda Raquel

2017-01-01

Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN) is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking. To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV) was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT). Adequate internal consistency was found (S-CVI = 0.83); Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents. Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV. The PCQN-SV is a useful Spanish language

Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.

PubMed

Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K

2016-09-01

Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.

An Integrative, Multilevel, and Transdisciplinary Research Approach to Challenges of Work, Family, and Health

PubMed Central

Bray, Jeremy W.; Kelly, Erin L.; Hammer, Leslie B.; Almeida, David M.; Dearing, James W.; King, Rosalind B.; Buxton, Orfeu M.

2013-01-01

Recognizing a need for rigorous, experimental research to support the efforts of workplaces and policymakers in improving the health and wellbeing of employees and their families, the National Institutes of Health and the Centers for Disease Control and Prevention formed the Work, Family & Health Network (WFHN). The WFHN is implementing an innovative multisite study with a rigorous experimental design (adaptive randomization, control groups), comprehensive multilevel measures, a novel and theoretically based intervention targeting the psychosocial work environment, and translational activities. This paper describes challenges and benefits of designing a multilevel and transdisciplinary research network that includes an effectiveness study to assess intervention effects on employees, families, and managers; a daily diary study to examine effects on family functioning and daily stress; a process study to understand intervention implementation; and translational research to understand and inform diffusion of innovation. Challenges were both conceptual and logistical, spanning all aspects of study design and implementation. In dealing with these challenges, however, the WFHN developed innovative, transdisciplinary, multi-method approaches to conducting workplace research that will benefit both the research and business communities. PMID:24618878

Organization and evaluation of generalist palliative care in a Danish hospital.

PubMed

Bergenholtz, Heidi; Hølge-Hazelton, Bibi; Jarlbaek, Lene

2015-05-06

Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Results from three different data sets, all aiming to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation of palliative care in order to identify concordances and/or discrepancies. The triangulation indicated poor validity of the results from existing methods used to evaluate palliative care in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organization and the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections in the fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized locally--if at all--within the various departments and with no overall structure or policy. This study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision of palliative care in the hospital. More research is needed to focus on the organization of palliative care and to establish indicators for high quality palliative care provided by the hospital. The lack of valid indicators

Palliative care in Pakistan.

PubMed

Khan, Robyna Irshad

2017-01-01

Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.

Music therapy for palliative care: A realist review.

PubMed

McConnell, Tracey; Porter, Sam

2017-08-01

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Palliative care in northern Tanzania: doing a lot with a little.

PubMed

Bond, Melissa J; Knopp, Andrea

2018-06-02

The number of people in need of palliative care is growing worldwide, particularly in the developing world. The World Health Organization recognises palliative care as a basic human right, but there are many challenges for delivering palliative care in low- and middle-income countries. In the African continent, the African Palliative Care Association (APCA) provides guidance for political advocacy for developing palliative care programmes and has developed the APCA Palliative Outcome Score (POS), an evidence-based tool for measuring outcomes of palliative care. This article focuses on palliative care delivery in Shirati, Tanzania, located in the Rorya District in the Mara Region in northern Tanzania, highlighting the impressive work done with limited resources and despite many challenges. Recommendations for future research include evaluation of outcomes using the APCA POS, the application of mobile technology, and governmental advocacy for increased access to opioid medications, which have shown promise in broadening the reach of palliative care in the East African Community.

Palliative care nurses' views on euthanasia.

PubMed

Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette

2004-09-01

In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.

Factors affecting rural volunteering in palliative care - an integrated review.

PubMed

Whittall, Dawn; Lee, Susan; O'Connor, Margaret

2016-12-01

To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment

[Participation of radiotherapy in interdisciplinary palliative care units--challenge and chance].

PubMed

Momm, Felix; Becker, Gerhild; Ewald, Hermann; Baumgartner, Johann; Adamietz, Irenäus A; Frommhold, Hermann

2004-02-01

In Germany, a sufficient system of palliative care does not exist. Possibilities for participation of radiooncologists in the further development of this promising part of medical action are reported. Experiences from interdisciplinary work in the field of palliative care are described. This experience is communicated for use in the actual discussion about the future of palliative care in Germany, especially in the field of radiooncology. A palliative care unit can only work in a team of different professions, which means different physicians, but also nurses, social workers, psychologists or pastors. A palliative care unit will benefit from working with radiooncologists as well as radiooncologists will do from working in the field of palliative care. In times of growing interest in and need for palliative care, radiooncologists should actively participate in the development of palliative care units in Germany. The aim of this participation should be to reasonably arrange the treatment of incurably ill patients with the chances of modern radiotherapy. Another aim should be to improve the treatment of "classic" radiation oncology patients by ideas of palliative care. The further development of palliative care in Germany should not take place without the participation of radiooncologists. This will meet the interests of palliative care and radiotherapy and-most importantly-the patients' interests.

Creativity in Business/Business in Creativity: Transdisciplinary Curricula as an Enabling Strategy in Enterprise Education

ERIC Educational Resources Information Center

Penaluna, Andrew; Penaluna, Kathryn

2009-01-01

Recent guidance for UK government policy makers has warned that HEIs face an uncertain future and has advocated transdisciplinary curricula. Earlier, in 2005, two other UK government papers highlighted the advantages of integrating design-related strategies into business environments and addressed the impact creativity could have on business…

Barriers to Optimal Palliative Care of Lung Transplant Candidates

PubMed Central

Colman, Rebecca E.; Curtis, J. Randall; Nelson, Judith E.; Efferen, Linda; Hadjiliadis, Denis; Levine, Deborah J.; Meyer, Keith C.; Padilla, Maria; Strek, Mary; Varkey, Basil

2013-01-01

Background: The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease. Methods: An e-mail questionnaire was sent to members of the American College of Chest Physicians’ Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates. Results: The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 (± 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and

Flemish palliative care nurses' attitudes toward euthanasia: a quantitative study.

PubMed

Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

2009-10-01

To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.

Palliative and end of life care in solid organ transplantation.

PubMed

Wentlandt, K; Weiss, A; O'Connor, E; Kaya, E

2017-12-01

Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons.

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

PubMed Central

Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H

2016-01-01

Objective The aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician. Methods The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. Results The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. Conclusions The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care. PMID:27389693

Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

PubMed

Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

2017-08-01

While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

Provision of Palliative Care Services by Family Physicians Is Common.

PubMed

Ankuda, Claire K; Jetty, Anuradha; Bazemore, Andrew; Petterson, Stephen

2017-01-01

Provision of palliative care services by primary care physicians is increasingly important with an aging population, but it is unknown whether US primary care physicians see themselves as palliative practitioners. This study used cross-sectional analysis of data from the 2013 American Board of Family Medicine Maintenance of Certification Demographic Survey. Of 10,894 family physicians, 33.1% (n = 3609) report providing palliative care. Those providing palliative care are significantly more likely to provide non-clinic-based services such as care in nursing homes, home visits, and hospice. Controlling for other characteristics, physicians reporting palliative care provision are significantly ( P < .05) more likely to be older, white, male, rural, and practicing in a patient-centered medical home. One third of family physicians recertifying in 2013 reported providing palliative care, with physician and practice characteristics driving reporting palliative care provision. © Copyright 2017 by the American Board of Family Medicine.

Leadership Development Initiative: Growing Global Leaders… Advancing Palliative Care.

PubMed

Ferris, Frank D; Moore, Shannon Y; Callaway, Mary V; Foley, Kathleen M

2018-02-01

The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit.

PubMed

Parra Palacio, Santiago; Giraldo Hoyos, Clara Elisa; Arias Rodríguez, Camilo; Mejía Arrieta, Daniel; Vargas Gómez, John Jairo; Krikorian, Alicia

2018-03-29

To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.

Palliative Sedation: An Analysis of International Guidelines and Position Statements.

PubMed

Gurschick, Lauren; Mayer, Deborah K; Hanson, Laura C

2015-09-01

To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions. Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis. The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States. © The Author(s) 2014.

Integrating palliative care into the trajectory of cancer care

PubMed Central

Hui, David; Bruera, Eduardo

2016-01-01

Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

Priorities for Evaluating Palliative Care Outcomes in Intensive Care Units.

PubMed

Bakitas, Marie; Dionne-Odom, J Nicholas; Kamal, Arif; Maguire, Jennifer M

2015-09-01

Defining the quality of intensive care unit (ICU) care when patients are dying is challenging. Palliative care has been recommended to improve outcomes of dying ICU patients; however, traditional ICU quality indicators do not always align with palliative care. Evidence suggests that some aspects of ICU care improve when palliative care is integrated; however, consensus is lacking concerning the outcomes that should be measured. Overcoming challenges to measuring palliative care will require consensus development and rigorous research on the best way to evaluate ICU palliative care services. Copyright © 2015 Elsevier Inc. All rights reserved.

[The palliative treatment plan as basis for informed decisions in palliative or emergency care].

PubMed

Lederer, Wolfgang; Feichtner, Angelika; Medicus, Elisabeth

2011-11-01

Acute vital crisis in end-of-life situations may result in a person being hospitalized and thus, expelled from his intimate environment, which aggravates the continuity of care. This entails a heavy burden for patients and necessitates an emergency medical services (EMS) call without recognizable benefit in many cases. Crisis episodes frequently mark the beginning of the dying process. Advance care planning or end-of-life care in elderly patients can help prevent such situations and ensure high contentment of patients, families and caregivers. Frequently, the question arises whether the burden arising from further hospitalization or from certain medical treatment options is reasonably balanced by the potential benefits of the steps taken. In such comprehensive care settings a custom-tailored palliative treatment plan may serve as an instrument for advance care planning. A palliative treatment plan set up by a physician together with a caregiver helps ensure that acute problems can be solved quickly and satisfactorily in the patient's customary surroundings. If EMS assistance is still needed, the emergency physician has written information on the patient's situation and can act quickly to meet the patient's immediate needs. This also means that EMS personnel must be properly trained in providing palliative care. In this way the palliative treatment plan can help caregivers continue to care for patients in their intimate surroundings.

An integrated view of complex landscapes: a big data-model integration approach to trans-disciplinary science

USDA-ARS?s Scientific Manuscript database

The Earth is a complex system comprised of many interacting spatial and temporal scales. Understanding, predicting, and managing for these dynamics requires a trans-disciplinary integrated approach. Although there have been calls for this integration, a general approach is needed. We developed a Tra...

Five policies to promote palliative care for patients with ESRD.

PubMed

Tamura, Manjula Kurella; Meier, Diane E

2013-10-01

Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure.

Enhancing palliative care delivery in a regional community in Australia.

PubMed

Phillips, Jane L; Davidson, Patricia M; Jackson, Debra; Kristjanson, Linda; Bennett, Margaret L; Daly, John

2006-08-01

Although access to palliative care is a fundamental right for people in Australia and is endorsed by government policy, there is often limited access to specialist palliative care services in regional, rural and remote areas. This article appraises the evidence pertaining to palliative care service delivery to inform a sustainable model of palliative care that meets the needs of a regional population on the mid-north coast of New South Wales. Expert consultation and an eclectic literature review were undertaken to develop a model of palliative care service delivery appropriate to the needs of the target population and resources of the local community. On the basis of this review, a local palliative care system that is based on a population-based approach to service planning and delivery, with formalized integrated network agreements and role delineation between specialist and generalist providers, has the greatest potential to meet the palliative care needs of this regional coastal community.

Current status of palliative care services in Indonesia: a literature review.

PubMed

Rochmawati, Erna; Wiechula, Rick; Cameron, Kate

2016-06-01

To review healthcare literature in relation to the provision of palliative care in Indonesia and to identify factors that may impact on palliative care development. People living with life-limiting illness benefit from access to palliative care services to optimize quality of life. Palliative care services are being expanded in developing countries but in Indonesia such services are in their infancy with many patients with life-limiting illnesses having access to appropriate health care compromised. Relevant healthcare databases including CINAHL, PubMed, Science Direct and Scopus were searched using the combinations of search terms: palliative care, terminal care, end-of-life care, Indonesia and nursing. A search of grey literature including Internet sites was also carried out. Nine articles were included in the review. Facilitating factors supporting the provision of palliative care included: a culture of strong familial support, government policy support, volunteering and support from regional organizations. Identified barriers to palliative care provision were a limited understanding of palliative care among healthcare professionals, the challenging geography of Indonesia and limited access to opioid medications. There are facilitators and barriers that currently impact on the development of palliative care in Indonesia. Strategies that can be implemented to improve palliative care include training of nurses and doctors in the primary care sector, integrating palliative care in undergraduate medical and nursing curriculum and educating family and community about basic care. Nurses and doctors who work in primary care can potentially play a role in supporting and educating family members providing direct care to patients with palliative needs. © 2016 International Council of Nurses.

From pregnancy to palliative care: advancing professional midwifery practice?

PubMed

Peacock, Valerie; Price, Jayne; Nurse, Sharon

2015-11-01

Historically midwives may have not considered palliative care as a part of their professional role. Enhanced technologies and antenatal screening have broadened the boundaries of care. However do midwives truly embrace the philosophy of palliative care into their practice? This paper presents the discussion round a case study that demonstrates the evolving area of advanced practice: perinatal palliative care. What we highlight is that midwives in fact have an important collaborative role to play in ensuring that palliative care for the baby and family starts as soon as a life-limiting condition is recognised, thus ensuring best care and support are provided for those parents and families for whom pregnancy sadly leads to palliative care. Five key lessons for practice are outlined.

[Providing regular relief; considerations for palliative care in the Netherlands].

PubMed

Crul, B J; van Weel, C

2001-10-20

Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.

Factors influencing palliative care. Qualitative study of family physicians' practices.

PubMed Central

Brown, J. B.; Sangster, M.; Swift, J.

1998-01-01

OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine. PMID:9612588

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries

PubMed Central

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-01-01

Background: Integrated palliative care aims at improving coordination of palliative care services around patients’ anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. Aim: To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Design: Qualitative group interview design. Setting/participants: A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses (n = 66; 46%) and physicians (n = 50; 35%). Results: The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Conclusion: Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.

PubMed

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-06-01

Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.

Bypass laparoscopic procedure for palliation of esophageal cancer.

PubMed

Siosaki, Marcos Duarte; Lacerda, Croider Franco; Bertulucci, Paulo Anderson; da Costa Filho, José Orlando; de Oliveira, Antônio Talvane Torres

2013-03-26

Esophageal cancer is a devastating disease with rapidly increasing incidence in Western countries. Dysphagia is the most common complication, causing severe malnutrition and reduced quality of life. A 69-year-old male with persistent esophageal cancer after radiation therapy was subjected to palliative by-pass surgery using a laparoscopic approach. Due to the advanced stage at diagnosis, palliative treatment was a more realistic option. Dysphagia is a most distressing symptom of this disease, causing malnutrition and reducing quality of life. The goal of palliation is to improve swallowing. The most common methods applied are endoscopic stenting, radiation therapy (external or brachytherapy), chemotherapy, yttrium-aluminum-garnet laser rechanneling or endoscopic dilatation. Palliative surgery is rarely proposed due to morbidity and complications. This paper demonstrates an update in the technique proposed by Postlethwait in 1979 for palliation of esophageal cancer. Published by Oxford University Press and JSCR Publishing Ltd. All rights reserved. © The Author 2013.

Barriers to providing palliative care in long-term care facilities

PubMed Central

Brazil, Kevin; Bédard, Michel; Krueger, Paul; Taniguchi, Alan; Kelley, Mary Lou; McAiney, Carrie; Justice, Christopher

2006-01-01

OBJECTIVE To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. DESIGN Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. SETTING All licensed LTC facilities in Ontario with designated medical directors. PARTICIPANTS Medical directors in the facilities. MAIN OUTCOME MEASURES Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. RESULTS Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff’s capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice

Barriers to providing palliative care in long-term care facilities.

PubMed

Brazil, Kevin; Bédard, Michel; Krueger, Paul; Taniguchi, Alan; Kelley, Mary Lou; McAiney, Carrie; Justice, Christopher

2006-04-01

To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. All licensed LTC facilities in Ontario with designated medical directors. Medical directors in the facilities. Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff's capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice guidelines related to assessing and managing palliative care patients (67

Attitudes of palliative home care physicians towards palliative sedation at home in Italy.

PubMed

Mercadante, Sebastiano; Masedu, Francesco; Mercadante, Alessandro; Marinangeli, Franco; Aielli, Federica

2017-05-01

Information about the attitudes towards palliative sedation (PS) at home is limited. The aim of this survey was to assess the attitudes of palliative care physicians in Italy regarding PS at home. A questionnaire was submitted to a sample of palliative care physicians, asking information about their activity and attitudes towards PS at home. This is a survey of home care physicians in Italy who were involved in end-of-life care decisions at home. One hundred and fifty participants responded. A large heterogeneity of home care organizations that generate some problems was found. Indications, intention and monitoring of PS seem to be appropriate, although some cultural and logistic conditions were limiting the use of PS. Specialized home care physicians are almost involved to start PS at home. Midazolam was seldom available at home and opioids were more frequently used. These data should prompt health care agencies to make a minimal set of drugs easily available for home care. Further research is necessary to compare attitudes in countries with different sociocultural profiles.

Palliative Cancer Care in Brazil: The Perspective of Nurses and Physicians.

PubMed

da Silva, Marcelle M; Büscher, Andreas; Moreira, Marléa Chagas

Palliative care is a recent development in health worldwide. In Brazil, a growing number of people with cancer require palliative care, emphasizing the need for investment in this aspect of health to increase the quality of life of patients during the dying process. As a developing country, Brazil lacks knowledge regarding the themes, material and financial resources, and policies of palliative care. The aim of this study was to provide insights into the Brazilian palliative care system from the perspectives of nurses and physicians. This was a descriptive and qualitative study, conducted at the palliative care unit of the Instituto Nacional de Câncer in Brazil. Twelve professionals, among them 8 nurses and 4 physicians, were interviewed in November 2013. The data were analyzed using the thematic analysis method. Ethical aspects were respected. The perspectives of the participants were characterized by 3 themes regarding the initial phase of development of palliative cancer care in Brazil: (1) controversies about when palliative cancer care should be initiated, (2) the World Health Organization recommendations and current practices, and (3) the need to invest in palliative cancer care education in Brazil. The development of palliative care is in the initial stages, and there is a possibility for growth due to recent advances. Knowledge about these challenges to palliative care could contribute to the development of strategies, such as the establishment of service organizations and networks, as well as educational and political investments for the advancement of palliative care.

Palliative Care Texts

MedlinePlus

... page: https://medlineplus.gov/palliativecaretexts.html Palliative Care Texts To use the sharing features on this page, please enable JavaScript. Free text messages to support you and your family during ...

Comfort experience in palliative care: a phenomenological study.

PubMed

Coelho, Adriana; Parola, Vitor; Escobar-Bravo, Miguel; Apóstolo, João

2016-08-02

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. A phenomenological descriptive study was undertaken. Ten inpatients were recruited from a Spanish palliative care unit and seven from a Portuguese palliative care unit. Data were collected using individual interviews and analysed following the method of Giorgi. Four themes reflect the essence of the lived experience: The Palliative Care as a response to the patient's needs with advanced disease, attempt to naturalize advanced disease, confrontation with their own vulnerability, openness to the spiritual dimension. Informants revealed that they experience comfort through humanized care, differentiated environment, symptomatic control, hope and relationships. The discomfort emerges from the losses and powerlessness against their situation. Even if such findings may seem intuitive, documenting them is essential because it invites us to reflect on our convictions about what it means to be comfortable for these patients, and allows incorporating this information in the design of focused interventions to maximize the comfort experience.

Assessment of palliative care services in western Kenya.

PubMed

Zubairi, Hijab; Tulshian, Priyanka; Villegas, Sarah; Nelson, Brett D; Ouma, Kennedy; Burke, Thomas F

2017-04-01

The need for palliative care services is rapidly increasing due to the rising number of patients with non-communicable diseases. The objective of this study was to assess the current availability and barriers to palliative care and healthcare worker knowledge and perceptions on palliative pain control in western Kenya. An evidence-based 40-question assessment tool was conducted between October 2015 and February 2016 in Siaya County, western Kenya. All level 4 and 5 facilities (e.g., regional and district hospitals) were assessed, as well as a selection of lower-level facilities chosen via convenience sampling, stratified by facility level (e.g., dispensaries, health centers, and health clinics). A key informant at each of 22 facilities was surveyed and included 1 medical officer (5%), 12 clinical officers (55%), and 9 nurses (41%). Key themes included training and education, awareness of palliative care and hospice, services provided, and pain control. All 22 providers had heard of palliative care and 4 (18%) had received formal training. Fourteen (64%) providers knew that morphine was on the World Health Organization (WHO) essential medication list, 8 (36%) had previously prescribed opioids, and 5 (23%) had prescribed them for palliation. Provider concerns for opioid use included its addictive properties (59%), appropriate dosing (9%), cost (5%), side effects (9%), and availability (5%). Palliative care and hospice services were identified by providers as important components in the management of chronic illnesses in western Kenya. Further provider education as well as increased access to pain medications including opioids is necessary to improve the care of patients in western Kenya.

Evaluating palliative care needs in Middle Eastern countries.

PubMed

Silbermann, Michael; Fink, Regina M; Min, Sung-Joon; Mancuso, Mary P; Brant, Jeannine; Hajjar, Ramzi; Al-Alfi, Nesreen; Baider, Lea; Turker, Ibrahim; ElShamy, Karima; Ghrayeb, Ibtisam; Al-Jadiry, Mazin; Khader, Khaled; Kav, Sultan; Charalambous, Haris; Uslu, Ruchan; Kebudi, Rejin; Barsela, Gil; Kuruku, Nilgün; Mutafoglu, Kamer; Ozalp-Senel, Gulsin; Oberman, Amitai; Kislev, Livia; Khleif, Mohammad; Keoppi, Neophyta; Nestoros, Sophia; Abdalla, Rasha Fahmi; Rassouli, Maryam; Morag, Amira; Sabar, Ron; Nimri, Omar; Al-Qadire, Mohammad; Al-Khalaileh, Murad; Tayyem, Mona; Doumit, Myrna; Punjwani, Rehana; Rasheed, Osaid; Fallatah, Fatimah; Can, Gulbeyaz; Ahmed, Jamila; Strode, Debbie

2015-01-01

Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease. To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities. Descriptive survey. Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings. Palliative care needs assessment. Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly. The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.

Strategies for Development of Palliative Care From the Perspectives of General Population and Health Care Professionals: A Japanese Outreach Palliative Care Trial of Integrated Regional Model Study.

PubMed

Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji

2015-09-01

This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population. © The Author(s) 2014.

Untangling the Complexity of Liver Fluke Infection and Cholangiocarcinoma in NE Thailand Through Transdisciplinary Learning.

PubMed

Ziegler, A D; Echaubard, P; Lee, Y T; Chuah, C J; Wilcox, B A; Grundy-Warr, C; Sithithaworn, P; Petney, T N; Laithevewat, L; Ong, X; Andrews, R H; Ismail, T; Sripa, B; Khuntikeo, N; Poonpon, K; Tungtang, P; Tuamsuk, K

2016-06-01

This study demonstrates how a transdisciplinary learning approach provided new insights for explaining persistent Opisthorchis viverrini infection in northern Thailand, as well as elucidating problems of focusing solely on the parasite as a means of addressing high prevalence of cholangiocarcinoma. Researchers from diverse backgrounds collaborated to design an investigative homestay program for 72 Singaporean and Thai university students in five northeast Thai villages. The students explored how liver fluke infection and potential cholangiocarcinoma development are influenced by local landscape dynamics, aquatic ecology, livelihoods, food culture and health education. Qualitative fieldwork was guided daily by the researchers in a collaborative, co-learning process that led to viewing this health issue as a complex system, influenced by interlinked multidimensional factors. Our transdisciplinary experience has led us to believe that an incomplete understanding of these linkages may reduce the efficacy of interventions. Further, viewing liver fluke infection and cholangiocarcinoma as the same issue is inadvisable. Although O. viverrini infection is an established risk factor for the development of cholangiocarcinoma, multiple factors are known to influence the likelihood of acquiring either. Understanding the importance of the current livelihood transition, landscape modification and the resulting mismatch between local cultures and new socio-ecological settings on cholangiocarcinoma initiation and liver fluke transmission is of critical importance as it may help readjust our view of the respective role of O. viverrini and other socioeconomic risk factors in cholangiocarcinoma etiology and refine intervention strategies. As demonstrated in this study, transdisciplinary approaches have the potential to yield more nuanced perspectives to complex diseases than research that focuses on specific aspects of their epidemiology. They may therefore be valuable when designing

Palliative Care Professional Development for Critical Care Nurses: A Multicenter Program.

PubMed

Anderson, Wendy G; Puntillo, Kathleen; Cimino, Jenica; Noort, Janice; Pearson, Diana; Boyle, Deborah; Grywalski, Michelle; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Barbour, Susan; Turner, Kathleen; Moore, Eric; Liao, Solomon; Ferrell, Bruce; Mitchell, William; Edmonds, Kyle; Fairman, Nathan; Joseph, Denah; MacMillan, John; Milic, Michelle M; Miller, Monica; Nakagawa, Laura; O'Riordan, David L; Pietras, Christopher; Thornberry, Kathryn; Pantilat, Steven Z

2017-09-01

Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. To implement and evaluate a palliative care professional development program for ICU bedside nurses. From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs. ©2017 American Association of Critical-Care Nurses.

Clinical aspects of palliative care in advanced Parkinson’s disease

PubMed Central

2012-01-01

Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients. PMID:23098090

Palliative care for respiratory disease: An education model of care.

PubMed

Bowman, Brynn; Meier, Diane E

2018-02-01

That palliative care improves quality of life for seriously ill patients and their families is well known - but how can healthcare providers ensure that the palliative needs of all patients are being assessed and addressed? A growing number of curricula in core palliative care practices have been developed to ensure that clinicians from all specialties and disciplines have the necessary training to manage pain and symptoms and discuss care goals with patients and families. Through broad-based training in core palliative care skills, combined with referral to specialty palliative care for high-need patients, providers can improve quality of life for their patients with respiratory disease.

Palliative care in Argentina: perspectives from a country in crisis.

PubMed

De Simone, Gustavo G

2003-01-01

Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomérica training program is discussed.

[Potential of specialized outpatient palliative care].

PubMed

Geist, M J P; Bardenheuer, H J; Weigand, M A; Frankenhauser, S; Kessler, J

2018-05-01

Palliative care patients with incurable advanced disease suffering from complex symptoms can receive specialized outpatient palliative care in addition to the existing ambulatory care system. Qualified physicians and nurses care for patients and their dependents in cooperation with other professionals. In addition to a 24/7 on-call service for emergencies or acute crises, patients and their dependents are offered regular visits.

Development and challenges of palliative care in Indonesia: role of psychosomatic medicine.

PubMed

Putranto, Rudi; Mudjaddid, Endjad; Shatri, Hamzah; Adli, Mizanul; Martina, Diah

2017-01-01

To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.

Palliative care in patients with haematological neoplasms: An integrative systematic review.

PubMed

Moreno-Alonso, Deborah; Porta-Sales, Josep; Monforte-Royo, Cristina; Trelis-Navarro, Jordi; Sureda-Balarí, Anna; Fernández De Sevilla-Ribosa, Alberto

2018-01-01

Palliative care was originally intended for patients with non-haematological neoplasms and relatively few studies have assessed palliative care in patients with haematological malignancies. To assess palliative care interventions in managing haematological malignancies patients treated by onco-haematology departments. Integrative systematic review with data extraction and narrative synthesis (PROSPERO #: CRD42016036240). PubMed, CINAHL, Cochrane, Scopus and Web-of-Science were searched for articles published through 30 June 2015. Study inclusion criteria were as follows: (1) published in English or Spanish and (2) containing data on palliative care interventions in adults with haematological malignancies. The search yielded 418 articles; 99 met the inclusion criteria. Six themes were identified: (1) end-of-life care, (2) the relationship between onco-haematology and palliative care departments and referral characteristics, (3) clinical characteristics, (4) experience of patients/families, (5) home care and (6) other themes grouped together as 'miscellany'. Our findings indicate that palliative care is often limited to the end-of-life phase, with late referral to palliative care. The symptom burden in haematological malignancies patients is more than the burden in non-haematological neoplasms patients. Patients and families are generally satisfied with palliative care. Home care is seldom used. Tools to predict survival in this patient population are lacking. Despite a growing interest in palliative care for haematological malignancies patients, the evidence base needs to be strengthened to expand our knowledge about palliative care in this patient group. The results of this review support the need to develop closer cooperation and communication between the palliative care and onco-haematology departments to improve patient care.

How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

PubMed

Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki

2016-07-01

To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.

Normativity unbound: liminality in palliative care ethics.

PubMed

Braude, Hillel

2012-04-01

This article applies the anthropological concept of liminality to reconceptualize palliative care ethics. Liminality possesses both spatial and temporal dimensions. Both these aspects are analyzed to provide insight into the intersubjective relationship between patient and caregiver in the context of palliative care. Aristotelian practical wisdom, or phronesis, is considered to be the appropriate model for palliative care ethics, provided it is able to account for liminality. Moreover, this article argues for the importance of liminality for providing an ethical structure that grounds the doctrine of double effect and overcomes the impasse of phronesis in the treatment of the terminally ill.

Care in Nursing Facilities after Palliative Consult.

PubMed

Carpenter, Joan G; Berry, Patricia H; Ersek, Mary

2018-04-01

Despite hospital palliative care consultations during which goals of care are discussed in the context of poor prognoses, older adults are admitted to nursing homes for post-acute care where the focus is on rehabilitation. The purpose of this qualitative descriptive study was to describe factors that influence discontinuity between a palliative care consult and nursing home care and explore the potential consequences of this discontinuity. Twelve adults (mean age of 80 years) were enrolled from one community hospital and nursing home in the mid-Atlantic United States. Semi-structured interviews and medical record reviews were used to elicit information about clinical course, care processes, and patient/family preferences at hospital discharge and up to four times after nursing home admission. Data were analyzed using inductive content analysis techniques. Analysis revealed two themes: Inadequate Communication characterized by the lack of information about the palliative care consult after hospital discharge and Prognosis Incongruence evidenced by data demonstrating a discrepancy between hospital prognosis and nursing home care. Ongoing communication between settings to re-address goals of care, prognosis, and symptoms-the central tenets of palliative care-is lacking. Efforts to improve access to comprehensive palliative care delivery after hospitalization and during nursing home transitions are greatly needed.

Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.

PubMed

Kozlov, Elissa; Niknejad, Bahar; Reid, M C

2018-03-01

Patients with advanced illness often have high rates of psychological symptoms. Many multicomponent palliative care intervention studies have investigated the efficacy of overall symptom reduction; however, little research has focused explicitly on how interventions address psychological symptoms associated with serious illness. The current study reviewed 59 multicomponent palliative care intervention articles and analyzed the mental health components of palliative care interventions and their outcomes in order to better understand the current state of psychological care in palliative care. The majority of articles (69.5%) did not provide any details regarding the psychological component delivered as part of the palliative care intervention. Most (54.2%) studies did not specify which provider on the team was responsible for providing the psychological intervention. Studies varied regarding the type of outcome measure utilized; multi-symptom assessment scales were used in 54.2% of studies, mental health scales were employed in 25.4%, quality of life and distress scales were used in 16.9%, and no psychological scales were reported in 28.8%. Fewer than half the studies (42.4%) documented a change in a psychological outcome. The majority of analyzed studies failed to describe how psychological symptoms were identified and treated, which discipline on the team provided the treatment, and whether psychological symptoms improved as a result of the intervention. Future research evaluating the effects of palliative care interventions on psychological symptoms will benefit from using reliable and valid psychological outcome measures and providing specificity regarding the psychological components of the intervention and who provides it.

Increasing Access to Palliative Care Services in the Intensive Care Unit.

PubMed

McCarroll, Caitlin Marie

The Institute of Medicine's report, Dying in America, highlights the critical need for the widespread implementation of palliative care to improve end-of-life care. Approximately 20% of all deaths in America occur during or shortly after an intensive care unit (ICU) admission; therefore, it is important for critical care units to have systems in place to facilitate patient access to palliative care services. The aim of this quality improvement (QI) project was to develop and implement a palliative care screening tool using evidence-based triggers to help increase the proportion of palliative care consultations in the ICU setting. A QI project was designed and implemented in a 14-bed medical-surgical ICU in the southeastern United States using the Plan-Do-Study-Act cycle. A palliative care screening tool was developed by an interdisciplinary team of key stakeholders in the ICU using evidence-based triggers, and staff were educated on the intervention. The proportion of ICU patients who received a palliative care consultation was compared preintervention and postintervention to determine whether the QI project contributed to an increased proportion of palliative care consultations. The proportion of palliative care consultations among patients admitted to the ICU by the pulmonary critical care team increased from 1 of 10 preintervention to 3 of 10 postintervention, resulting in a promising increase in patients receiving palliative care services consistent with evidence-based recommendations. The use of an evidence-based screening tool to trigger palliative care consultation in the ICU setting can aid in increasing the proportion of critical care patients who receive a palliative care referral. The increase in the proportion of palliative care referrals by the pulmonary critical care service warrants expansion of the intervention to include additional medical subspecialists who frequently admit patients in this ICU setting. Further assessment of the intervention is

Launching a palliative care homepage: the Edmonton experience.

PubMed

Pereira, J; Macmillan, A; Bruera, E

1997-11-01

The Internet, with its graphical subdivision, the World Wide Web (WWW). has become a powerful tool for the dissemination of information and for communication. This paper discusses the authors' experiences with creating, launching and maintaining an official publication on the Internet by the Edmonton Regional Palliative Care Program and the Division of Palliative Medicine, University of Alberta, Canada. It describes the content and format of the homepage and the process of publication. Over a six-month period there were 892 visits to the site and 84 separate items of correspondence to the site's editors. Of these correspondence items, 36 were requesting further information regarding clinical and other programme information. Sixty-nine of the 84 communications came from North America and Europe. The pattern of readership is briefly discussed as are some of the potential advantages and challenges when utilizing this electronic medium. To promote the dissemination of reliable information on the Internet, the authors encourage other palliative care groups and organizations to publish on the WWW. The URL is http:/(/)www.palliative.org (previously http:/(/)www.caritas.ab.ca/approximately palliate).

The Quality Imperative for Palliative Care

PubMed Central

Kamal, Arif H.; Hanson, Laura C.; Casarett, David J.; Dy, Sydney M.; Pantilat, Steven Z.; Lupu, Dale; Abernethy, Amy P.

2015-01-01

Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the United States shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), “here is what we do,” and increase the focus on “this is how well we do it” and “let’s see how we can do it better.” It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. PMID:25057987

SLA for the 21st Century: Disciplinary Progress, Transdisciplinary Relevance, and the Bi/Multilingual Turn

ERIC Educational Resources Information Center

Ortega, Lourdes

2013-01-01

The goals of this article are to appraise second language acquisition's (SLA) disciplinary progress over the last 15 years and to reflect on transdisciplinary relevance as the field has completed 40 years of existence and moves forward into the 21st century. I first identify four trends that demonstrate vibrant disciplinary progress in SLA. I then…

Palliative care in India: successes and limitations.

PubMed

Rajagopal, M R; Venkateswaran, Chitra

2003-01-01

Palliative care in India is in a relatively early stage of development and consequently faces numerous problems. The extent of problems relating to the lack of such care is not well described for cancer or nonmalignant diseases. Opioid availability is seriously limited. Many inexpensive drugs are not readily available and some very expensive drugs are often prescribed, adding to the patients' burden. Enormous psychosocial needs often are neglected in busy clinics. The government's palliative care policy has not been implemented. There are clear needs for improvement in multiple areas that must be addressed as new services develop. A system based on outpatient care has proven cost-effective, empowering families to care for patients at home. Whenever possible, inpatient facility and home visits should be available for those who need them. Some measures of quality assurance should develop concurrent with growth of the palliative care movement. Successes and problems in the development of palliative care in India are discussed.

Resources for Educating, Training, and Mentoring All Physicians Providing Palliative Care.

PubMed

Downar, James

2018-01-01

This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are undermined by the "hidden curriculum" in medical education; interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior. Sixth, undergraduate and postgraduate medical training is shifting from a time-based training paradigm to competency-based training and evaluation. Seventh, virtually every physician in Canada should be able to provide basic palliative care; physicians in specialized areas of practice should receive palliative care education that is tailored to their area, rather than generic educational interventions. For each key message, one or more implications are provided, which can serve as recommendations for a framework to improve palliative care as a whole in Canada.

Availability of Dutch General Practitioners for After-Hours Palliative Care.

PubMed

Plat, Fredrik M; Peters, Yvonne A S; Giesen, Paul; Smits, Marleen

2018-01-01

Continuity of care is important for palliative patients in their end of life. In the Netherlands, after-hours primary care for palliative patients is either provided by large-scale general practitioner (GP) cooperatives or GPs choose to give palliative care by themselves while they are not on duty. To examine the availability of, perceived problems by, and attitude of Dutch GPs regarding providing palliative care for their own patients outside office hours. Cross-sectional observational study among 1772 GPs from 10 Dutch regions. Online questionnaire among GPs affiliated with 10 GP cooperatives. Five hundred twenty-four (29.6%) eligible questionnaires were returned. Of the GPs, 60.8% were personally available outside office hours for their own palliative patients on their own private cell phone and performed home visits if needed. In 33.0%, GPs were willing to make home visits in private time instigated by the GP cooperative and 26.8% were only accessible for telephone consultation by the GP cooperative. In 12.2%, the GP delegated after-hours palliative care completely to the GP cooperative. The GPs predominantly reported "time pressure" problems (17.3%) as a barrier and 61.7% stated that after-hours palliative care is the responsibility of the own GP. The large majority of Dutch GPs is personally available for telephone consultation and/or willing to provide palliative care for their own patients outside office hours. For the future, it is important to maintain the willingness of GPs to remain personally available for their palliative patients.

Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study.

PubMed

Balkin, Emily Morell; Kirkpatrick, James N; Kaufman, Beth; Swetz, Keith M; Sleeper, Lynn A; Wolfe, Joanne; Blume, Elizabeth D

2017-10-01

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.

Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams

PubMed Central

Hoek, Patrick; Grandjean, Ilse; Verhagen, Constans A. H. H. V. M.; Jansen-Landheer, Marlies L. E. A.; Schers, Henk J.; Galesloot, Cilia; Vissers, Kris C. P.; Engels, Yvonne; Hasselaar, Jeroen G.J.

2015-01-01

Main Objective Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. Methods We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Main Results and Their Significance Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51–2.12) or COPD (OR 1.39; 95% CI: 1.15–1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22–1.40), agitation/delirium (OR 1.57; 95% CI: 1.47–1.68), exhaustion (OR 2.89; 95% CI: 2.61–3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37–2.96) or existential issues (OR 1.55; 95% CI: 1.31–1.83). Conclusion In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life. PMID:26301746

Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams.

PubMed

Hoek, Patrick; Grandjean, Ilse; Verhagen, Constans A H H V M; Jansen-Landheer, Marlies L E A; Schers, Henk J; Galesloot, Cilia; Vissers, Kris C P; Engels, Yvonne; Hasselaar, Jeroen G J

2015-01-01

Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51-2.12) or COPD (OR 1.39; 95% CI: 1.15-1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22-1.40), agitation/delirium (OR 1.57; 95% CI: 1.47-1.68), exhaustion (OR 2.89; 95% CI: 2.61-3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37-2.96) or existential issues (OR 1.55; 95% CI: 1.31-1.83). In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life.

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

Laser palliation of the HIV+ patient

NASA Astrophysics Data System (ADS)

Convissar, Robert A.

2003-12-01

Many oral manifestations of HIV infection can be used as markers for degree of immunosupression. These manifestations may be treated with antibiotics, analgesics, and antineoplastics, which may interact and interfere with antiviral agents used to treat the disease, and possibly exacerbate it. Dentists will see more HIV-infected patients as medical research transforms this disease into a chronic illness. Lasers have been shown to be effective instruments in palliation of oral manifestations of HIV infection. The use of lasers to palliate the painful symptoms of three oral manifestations of HIV infection is described. The advantages and benefits to both patient and dentist will be discussed. The paper does not address the use of lasers as a modality to treat or cure HIV infection -- only to palliate some of its symptoms.

Coping with terminal illness: the experience of attending Specialist Palliative Day Care.

PubMed

Bradley, Sarah Elizabeth; Frizelle, Dorothy; Johnson, Miriam

2010-10-01

The provision of supportive and palliative care for people with life-shortening illness has been emphasized throughout Department of Health and National Institute of Clinical Excellence (NICE) cancer guidance. However, the question of whether services are achieving this aim has been sparsely researched to date particularly in relation to Specialist Palliative Day Care (SPDC) services. The current study aims to explore the experiences of patients attending SPDC with regard to coping with a terminal illness. The views of 11 patients attending SPDC were explored using semistructured interviews. An exploratory methodology (Interpretative Phenomenological Analysis [IPA]) was used to analyze the data to allow for an in-depth investigation. Emerging themes suggest that SPDC provides an environment in which patients are helped to cope with stressors through a sense of self, belonging, acceptance of the reality of death, and a focus on life. This work provides a piece of the puzzle in the exploration of the processes underpinning attendance at SPDC from a patient's perspective. It suggests that SPDC provides an environment in which patients receive help in coping with terminal illness. In such an under researched area it provides an insight regarding SPDC attendance which can be built upon or challenged by future research.

Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework.

PubMed

Hermans, Kirsten; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

2014-12-05

Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC. This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes. This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology

The views of patients with brain cancer about palliative care: a qualitative study.

PubMed

Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

2017-12-01

Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

Transdisciplinary research in theatrical literature through technological integration and interfacing information

NASA Astrophysics Data System (ADS)

Pop, P. P.; Pop-Vădean, A.; Barz, C.; Latinovic, T.

2016-08-01

This paper aims to address more confident mathematical laws to explain a literary phenomenon. For this we studied the play "O scrisoare pierduta (Lost Letter)" written by Ion Luca Caragiale, in order to establish some connection between the characters but also to show certain aspects hidden by the author under the personality of the characters. We use transdisciplinary research to get from measurements and calculations results who will demonstrate objective of the proposed research. The challenge is to find those favorite characters by the author. Information and communications technology is a tool for research that will integrate this knowledge for modeling and interfacing.

Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision.

PubMed

Olsman, Erik; Duggleby, Wendy; Nekolaichuk, Cheryl; Willems, Dick; Gagnon, Judith; Kruizinga, Renske; Leget, Carlo

2014-11-01

Hope is important in palliative care. However, palliative care professionals' perspectives on hope are not well understood. Metaphors of hope are a way of better understanding these perspectives. To describe palliative care professionals' perspectives on hope by examining the hope metaphors they spontaneously used to describe their own hope and their perspectives on the hope of patients and their families. Semistructured interviews with palliative care professionals were recorded, transcribed, and analyzed using a narrative approach. Results were discussed until the researchers reached consensus and reinforced by other health-care professionals and by observing several palliative care settings. The 64 participants (mean (SD) age, 48.42 (9.27) years and 72% female) were physicians (41%), nurses (34%), chaplains (20%), or other professionals (5%), working in Canada (19%) or The Netherlands (81%). Participants described the hope of patients, their families, or themselves as a 1) grip, which implied safety; 2) source, which implied strength; 3) tune, which implied harmony; and 4) vision, which implied a positive perspective. Compared with Dutch participants, Canadian participants generally put more emphasis on spirituality and letting go of their own hope as a grip (safety). Compared with other included professionals, physicians used hope as a grip (safety) most often, whereas chaplains used hope as a tune (harmony) most often. Our findings help to increase the understanding of hope and contribute to improving communication skills in palliative care professionals. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Implementation of a palliative care concept in a geriatric acute care hospital].

PubMed

Hagg-Grün, U; Lukas, A; Sommer, B-N; Klaiber, H-R; Nikolaus, T

2010-12-01

To integrate palliative care patients into an acute geriatric ward requires extensive and continuous education and preparation of all participating professionals. It can be a lengthy process to integrate palliative care concepts despite cooperation of the hospital administration. The group of patients to be integrated differs from the patients of regular geriatric wards because of a higher percentage of relatively young oncologic patients and they differ from a regular palliative ward because about 50% are non-oncologic patients, while the average age is much higher than in normal palliative care. It is possible to integrate specialized palliative care into a regular geriatric ward. Patients admitted without palliative intention will benefit the most from ward-integrated palliative care if the treatment aim turns this way. Ward-integrated palliative care can be an integral part of treating geriatric patients in addition to acute geriatric medicine, rehabilitation, and prevention. It can also provide caretakers and patients with the benefits from continuity of treatment and care.

Improving the Quality of Palliative Care Through National and Regional Collaboration Efforts.

PubMed

Kamal, Arif H; Harrison, Krista L; Bakitas, Marie; Dionne-Odom, J Nicholas; Zubkoff, Lisa; Akyar, Imatullah; Pantilat, Steven Z; O'Riordan, David L; Bragg, Ashley R; Bischoff, Kara E; Bull, Janet

2015-10-01

The measurement and reporting of the quality of care in the field of palliation has become a required task for many health care leaders and specialists in palliative care. Such efforts are aided when organizations collaborate together to share lessons learned. The authors reviewed examples of quality-improvement collaborations in palliative care to understand the similarities, differences, and future directions of quality measurement and improvement strategies in the discipline. Three examples were identified that showed areas of robust and growing quality-improvement collaboration in the field of palliative care: the Global Palliative Care Quality Alliance, Palliative Care Quality Network, and Project Educate, Nurture, Advise, Before Life Ends. These efforts exemplify how shared-improvement activities can inform improved practice for organizations participating in collaboration. National and regional collaboratives can be used to enhance the quality of palliative care and are important efforts to standardize and improve the delivery of palliative care for persons with serious illness, along with their friends, family, and caregivers.

Continuous palliative sedation for cancer and noncancer patients.

PubMed

Swart, Siebe J; Rietjens, Judith A C; van Zuylen, Lia; Zuurmond, Wouter W A; Perez, Roberto S G M; van der Maas, Paul J; van Delden, Johannes J M; van der Heide, Agnes

2012-02-01

Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. To study the practice of continuous palliative sedation for both cancer and noncancer patients. In 2008, a structured questionnaire was sent to 1580 physicians regarding their last patient receiving continuous sedation until death. A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported on their last case of continuous sedation (cancer patients: n=282 [76%] and noncancer patients: n=88 [24%]). More often, noncancer patients were older, female, and not fully competent. Dyspnea (odds ratio [OR]=2.13; 95% confidence interval [CI]: 1.22, 3.72) and psychological exhaustion (OR=2.64; 95% CI: 1.26, 5.55) were more often a decisive indication for continuous sedation for these patients. A palliative care team was consulted less often for noncancer patients (OR=0.45; 95% CI: 0.21, 0.96). Also, preceding sedation, euthanasia was discussed less often with noncancer patients (OR=0.42; 95% CI: 0.24, 0.73), whereas their relatives more often initiated discussion about euthanasia than relatives of cancer patients (OR=3.75; 95% CI: 1.26, 11.20). The practice of continuous palliative sedation in patients dying of cancer differs from patients dying of other diseases. These differences seem to be related to the less predictable course of noncancer diseases, which may reduce physicians' awareness of the imminence of death. Increased attention to noncancer diseases in palliative care practice and research is, therefore, crucial as is more attention to the potential benefits of palliative care consultation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Development and Implementation of a Pediatric Palliative Care Program in a Developing Country.

PubMed

Doherty, Megan; Thabet, Chloé

2018-01-01

Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries. Our aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting. Bangabandu Sheikh Mujib Medical University (BSMMU) is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU. We describe four key elements which were crucial for the success of this program: (1) raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2) providing education and training on pediatric palliative care for clinical staff; (3) forming a pediatric palliative care team; and (4) collecting data to characterize the need for pediatric palliative care. This model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.

Overcoming recruitment challenges in palliative care clinical trials.

PubMed

LeBlanc, Thomas W; Lodato, Jordan E; Currow, David C; Abernethy, Amy P

2013-11-01

Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research-especially participant recruitment-is difficult. Major barriers include (1) patient factors, (2) "gatekeeping," and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of "social marketing," an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing-based protocol shows the benefits of such an approach.

Islamic theology and the principles of palliative care.

PubMed

Al-Shahri, Mohammad Zafir

2016-12-01

It is well established that provision of palliative care is a human right for the patients and their families going through the suffering associated with a life-threatening illness. The holistic nature of palliative care, dictated by the multifaceted suffering experienced by patients, calls for giving due consideration to the cultural and spiritual background of the target population. Similarly, the paramount impact of Islamic wholeness on Muslims' perceptions, beliefs, and way of living makes it necessary for non-Muslim palliative care professionals who are caring for Muslim patients to increase their awareness about the parts of Islamic theology pertinent to the principles of palliative care. This would include a basic knowledge of the Islamic faith and how Muslims view and cope with the calamity of a life-threatening condition along with the suffering associated with it. Equally important are issues related to the management of symptoms using agents that are normally strictly prohibited by Islamic teachings, including opioids, brain stimulants, and cannabinoids. The current review briefly discusses the Islamic perspectives pertinent to a Muslim patient's journey throughout the palliative care experience, onward to a safe passing, and beyond.

A team approach in palliative care: enhancing outcomes.

PubMed

Schrader, Susan L; Horner, Arlene; Eidsness, LuAnn; Young, Sandy; Wright, Chris; Robinson, Michael

2002-07-01

While most Americans envision a "good death" as one occurring quickly and painlessly at home surrounded by loved ones, many people do not die in this fashion. Palliative care focuses on holistic treatment of patients whose disease is not responsive to curative treatment, and strives to improve quality of life for patients and families at end-of-life (EOL). This hospital-based study examines the extent to which a palliative care consultant team makes a difference in EOL for patients and families. Data were collected from a convenience sample of 50 hospitalized patients referred to an interdisciplinary palliative care consulting team at a South Dakota tertiary hospital during 2001. Various palliative care interventions were introduced during the course of hospitalization, and data were collected two days later to see if quality of life had improved. Statistically significant improvements were found in pain levels, non-pain symptom management, numerous psychosocial measures of quality of life, change in code status, and perceptions of communication and treatment during hospitalization. The study demonstrates that consultations with a palliative care team are beneficial and enhance the EOL experience for patients and families.

Physician Perspectives on Palliative Care for Children With Neuroblastoma: An International Context.

PubMed

Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K

2016-05-01

Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.

The Role of Palliative Surgery in Gynecologic Cancer Cases

PubMed Central

Hope, Joanie Mayer

2013-01-01

The decision to undergo major palliative surgery in end-stage gynecologic cancer is made when severe disease symptoms significantly hinder quality of life. Malignant bowel obstruction, unremitting pelvic pain, fistula formation, tumor necrosis, pelvic sepsis, and chronic hemorrhage are among the reasons patients undergo palliative surgeries. This review discusses and summarizes the literature on surgical management of malignant bowel obstruction and palliative pelvic exenteration in gynecologic oncology. PMID:23299775

The proportionate value of proportionality in palliative sedation.

PubMed

Berger, Jeffrey T

2014-01-01

Proportionality, as it pertains to palliative sedation, is the notion that sedation should be induced at the lowest degree effective for symptom control, so that the patient's consciousness may be preserved. The pursuit of proportionality in palliative sedation is a widely accepted imperative advocated in position statements and guidelines on this treatment. The priority assigned to the pursuit of proportionality, and the extent to which it is relevant for patients who qualify for palliative sedation, have been overstated. Copyright 2014 The Journal of Clinical Ethics. All rights reserved.

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

PubMed

Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

2017-07-01

Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

Core attitudes of professionals in palliative care: a qualitative study.

PubMed

Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde

2009-08-01

Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.

Split-course, high-dose palliative pelvic radiotherapy for locally progressive hormone-refractory prostate cancer.

PubMed

Gogna, Nirdosh Kumar; Baxi, Siddhartha; Hickey, Brigid; Baumann, Kathryn; Burmeister, Elizabeth; Holt, Tanya

2012-06-01

Local progression, in patients with hormone-refractory prostate cancer, often causes significant morbidity. Pelvic radiotherapy (RT) provides effective palliation in this setting, with most published studies supporting the use of high-dose regimens. The aim of the present study was to examine the role of split-course hypofractionated RT used at our institution in treating this group of patients. A total of 34 men with locoregionally progressive hormone-refractory prostate cancer, treated with a split course of pelvic RT (45-60 Gy in 18-24 fractions) between 2000 and 2008 were analyzed. The primary endpoints were the response rate and actuarial locoregional progression-free survival. Secondary endpoints included overall survival, compliance, and acute and late toxicity. The median age was 71 years (range, 53-88). Treatment resulted in an overall initial response rate of 91%, a median locoregional progression-free survival of 43 months, and median overall survival of 28 months. Compliance was excellent and no significant late toxicity was reported. The split course pelvic RT described has an acceptable toxicity profile, is effective, and compares well with other high-dose palliative regimens that have been previously reported. Copyright © 2012 Elsevier Inc. All rights reserved.

Palliative sedation: from the family perspective.

PubMed

Vayne-Bossert, Petra; Zulian, Gilbert B

2013-12-01

Palliative sedation (PS) is a treatment option in case of refractory symptoms at the end of life. The emotional impact on nurses and doctors has been widely studied. We explore the experience of family members during a PS procedure. An anonymous questionnaire was sent to the closest family members (n = 17) of patients who died while receiving palliative sedation. The response rate was 59% (10 of 17). Nine relatives were sufficiently informed about PS. In all, 70% evaluated the chosen moment for initiation of PS as adequate. All the relatives noticed a significant improvement in the refractory symptom with a mean reduction in the estimated suffering of 6.25 points on a visual analog scale. Palliative sedation should be performed in the best possible way for the patient and his family in order to efficiently reduce a refractory symptom.

Medication management for community palliative care patients and the role of a specialist palliative care pharmacist: A qualitative exploration of consumer and health care professional perspectives.

PubMed

Kuruvilla, Lisha; Weeks, Greg; Eastman, Peter; George, Johnson

2018-05-01

Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised. To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps. Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness. Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists. Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care. While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness.

District nurses' conceptions of medical technology in palliative homecare.

PubMed

Munck, Berit; Fridlund, Bengt; Mårtensson, Jan

2011-10-01

The aim of this study was to describe district nurses' conceptions of medical technology in palliative homecare. Medical technology has, in recent years, been widely used in palliative homecare. Personnel with varying degrees of training and knowledge must be able to handle the new technology. A descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology. Interviews with 16 district nurses working with palliative homecare were analysed and five descriptive categories emerged. Medical technology in palliative homecare led to vulnerability because of increasing demands and changing tasks. When medical technology was used in the home it demanded collaboration between all involved actors. It also demanded self-reliance and an awareness of managing medical technology in a patient-safe way. Medical technology provided freedom for the palliative patients. To maintain patient safety, more education and collaboration with palliative care teams is needed. Next-of-kin are considered as an important resource but their participation must be based on their own conditions. District nurses need regular training on medical devices, must be more specialized in this kind of care and must not fragment their working time within other specialities. © 2011 Blackwell Publishing Ltd.

Relieving existential suffering through palliative sedation: discussion of an uneasy practice.

PubMed

Bruce, Anne; Boston, Patricia

2011-12-01

This article presents a discussion of the use of palliative sedation in response to intractable (not responsive to treatment) existential suffering. Patients suffering from a terminal illness are often faced with severe symptoms at the end of life. Although palliative sedation is sometimes used when no other options are effective in relieving unbearable pain or suffering, its use in response to intractable existential suffering in terminal illness remains controversial. A literature search was conducted for published articles addressing the use of palliative sedation between 1996 and 2009 using established databases. Palliative sedation remains an uneasy practice. The debates have centred on ethical issues surrounding decisions to use sedation and on separating the intent of palliative sedation (relief of intolerable symptoms) from the intent of euthanasia (hastening death). There is lack of consensus in defining existential suffering. Consequently, there is limited understanding of how decisions are being made when using palliative sedation to treat intractable existential suffering. Given the confusion and uncertainty about ethical and clinical justifications for palliative sedation in treating existential suffering, we argue that a better understanding of the controversies and decision-making process is needed. Greater understanding is required to prevent palliative sedation from becoming a substitute for intensive treatment of this kind of suffering. © 2011 Blackwell Publishing Ltd.

Challenges in defining 'palliative care' for the purposes of clinical trials.

PubMed

Bausewein, Claudia; Higginson, Irene J

2012-12-01

Palliative care has become part of mainstream medicine with increasing evidence about the effectiveness of specialist palliative care (SPC) on patient and family outcomes. Comparison of studies testing SPC interventions is challenging as types of interventions and reporting of components of the intervention vary. In consequence, study results are difficult to interpret. There is a continuous lack of clarity in palliative care definitions. For clinical trials, multidisciplinary care, supportive care documentation, symptom assessment and symptom management are suggested as key domains. In recent studies testing palliative care as an intervention SPC physicians and palliative care nurses were core members of multiprofessional teams, but integration of other team members varied. Management of symptoms and psychosocial issues were central to SPC with various other areas described. Services were delivered by hospital and community support teams, in palliative care units, outpatient clinics and hospital. Cost information was only provided by a few studies. Due to the lack of an agreed definition of palliative care and heterogeneity in reporting of components of an SPC intervention comparison of studies remains challenging. Key aspects of palliative care interventions are incurable disease, multidisciplinary approach, focus on symptom management including standardized assessment, psychosocial and family support, and (advance) care planning. Detailed information about all aspects of the intervention should be provided.

Palliative Care Disincentives in CKD: Changing Policy to Improve CKD Care.

PubMed

Tamura, Manjula Kurella; O'Hare, Ann M; Lin, Eugene; Holdsworth, Laura M; Malcolm, Elizabeth; Moss, Alvin H

2018-06-01

The dominant health delivery model for advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States, which focuses on provision of dialysis, is ill-equipped to address many of the needs of seriously ill patients. Although palliative care may address some of these gaps in care, its integration into advanced CKD care has been suboptimal due to several health system barriers. These barriers include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives. This article reviews policies that affect the delivery of palliative care for this population, discusses reforms that could address disincentives to palliative care, identifies quality measurement issues for palliative care for individuals with advanced CKD and ESRD, and considers potential pitfalls in the implementation of new models of integrated palliative care. Reforming health care delivery in ways that remove policy disincentives to palliative care for patients with advanced CKD and ESRD will fill a critical gap in care. Copyright © 2018 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

[Advanced organ failure in the elderly. Some issues from a geriatrics, palliative medicine and bioethics perspectives].

PubMed

Alonso-Renedo, Francisco Javier; González-Ercilla, Leire; Iráizoz-Apezteguía, Itziar

2014-01-01

To analyze the literature as regards the knowledge, skills and attitudes that these disciplines can provide in improving technical, ethical and human quality health care in the elderly with advanced organ failure, multimorbidity, frailty and progressive dementia. A comprehensive review focused on available references on the interrelationship between geriatric medicine and palliative medicine, education in bioethics, prognostic tools, functional status, and the humanization of health care. Advance care planning, comprehensive geriatric assessment, the study of the values of the patient and their introduction in decision-making process, as well as the need to promote moral, care, and healthcare organizational ethics, are essential elements to achieve this objective. Practitioners and healthcare organizations should seek excellence as a moral requirement. To achieve this, there is a priority to acquire virtues of care and fundamental concepts of geriatric and palliative medicine, assessing functional status, advance care planning and patient/family needs as essential issues to protect, care for and promote them in all care settings. Copyright © 2013 SEGG. Published by Elsevier Espana. All rights reserved.

Employer Practices in Improving Employment Outcomes for People with Disabilities: A Transdisciplinary and Employer-Inclusive Research Approach

ERIC Educational Resources Information Center

Barrington, Linda; Bruyère, M.; Waelder, Margaret

2014-01-01

Objective: Share new knowledge about workplace practices related to employer success in hiring, retaining, and promoting people with disabilities, and promote use of findings to employers and service providers. Design: A transdisciplinary and multifaceted data gathering approach. Results: Provides an overview of the research approach taken and the…

Palliative Care Psychiatry: Update on an Emerging Dimension of Psychiatric Practice

PubMed Central

Fairman, Nathan

2013-01-01

Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027

Integration of Palliative Care in the Context of Rapid Response

PubMed Central

Nelson, Judith E.; Mathews, Kusum S.; Weissman, David E.; Brasel, Karen J.; Campbell, Margaret; Curtis, J. Randall; Frontera, Jennifer A.; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Weiss, Stefanie P.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.

2015-01-01

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

A Three Decade Evolution to Transdisciplinary Research: Community Health Research in California-Mexico Border Communities

PubMed Central

Elder, John P.; Ayala, Guadalupe X.; McKenzie, Thomas L.; Litrownik, Alan J.; Gallo, Linda C.; Arredondo, Elva M.; Talavera, Gregory A.; Kaplan, Robert M.

2013-01-01

Background The Institute for Behavioral and Community Health (IBACH) is a transdisciplinary organization with a team-oriented approach to the translation of research to practice and policy within the context of behavioral medicine. Objectives This paper tracks the growth of IBACH — in the context of evolving multi-university transdisciplinary research efforts — from a behavioral medicine research focus to community approaches to disease prevention and control, ultimately specializing in Latino health research and practice. We describe how this growth was informed by our partnerships with community members and organizations, and training a diverse array of students and young professionals. Methods Since 1982, IBACH’s research has evolved to address a greater breadth of factors associated with health and well-being. This was driven by our strong community focus and emphasis on collaborations, the diversity of our investigative teams, and our emphasis on training. Although behavioral science still forms the core of IBACH’s scientific orientation, research efforts extend beyond those traditionally examined. Conclusions IBACH’s “team science” successes have been fueled by a specific population emphasis making IBACH one of the nation’s leaders in Latino health behavior research. PMID:25435566

The history of transdisciplinary race classification: methods, politics and institutions, 1840s-1940s.

PubMed

McMahon, Richard

2018-03-01

A recently blossoming historiographical literature recognizes that physical anthropologists allied with scholars of diverse aspects of society and history to racially classify European peoples over a period of about a hundred years. They created three successive race classification coalitions - ethnology, from around 1840; anthropology, from the 1850s; and interwar raciology - each of which successively disintegrated. The present genealogical study argues that representing these coalitions as 'transdisciplinary' can enrich our understanding of challenges to disciplinary specialization. This is especially the case for the less well-studied nineteenth century, when disciplines and challenges to disciplinary specialization were both gradually emerging. Like Marxism or structuralism, race classification was a holistic interpretive framework, which, at its most ambitious, aimed to structure the human sciences as a whole. It resisted the organization of academia and knowledge into disciplines with separate organizational institutions and research practices. However, the 'transdisciplinarity' of this nationalistic project also bridged emerging borderlines between science and politics. I ascribe race classification's simultaneous longevity and instability to its complex and intricately entwined processes of political and interdisciplinary coalition building. Race classification's politically useful conclusions helped secure public support for institutionalizing the coalition's component disciplines. Institutionalization in turn stimulated disciplines to professionalize. They emphasized disciplinary boundaries and insisted on apolitical science, thus ultimately undermining the 'transdisciplinary' project.

Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

PubMed

Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit

2017-10-01

Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

Integrating palliative care with usual care of diabetic foot wounds.

PubMed

Dunning, Trisha

2016-01-01

Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction. Copyright © 2016 John Wiley & Sons, Ltd.

Function of local networks in palliative care: a Dutch view.

PubMed

Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A

2005-08-01

Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network formation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system. We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements? Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and developmental course. At the start of the study semistructured interviews were held with the coordinators of the eight networks. The information from these interviews and from the network documents were used to constitute a questionnaire to assess the opinions and experiences of the network participants. According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to

How do physicians learn to provide palliative care?

PubMed

Schulman-Green, Dena

2003-01-01

Medical interns, residents, and fellows are heavily involved in caring for dying patients and interacting with their families. Due to a lack of formal medical education in the area, these house staff often have a limited knowledge of palliative care. The purpose of this study was to determine how, given inadequate formal education, house staff learn to provide palliative care. Specifically, this study sought to explore the extent to which physicians learn to provide palliative care through formal medical education, from physicians and other hospital staff, and by on-the-job learning. Twenty physicians were interviewed about their medical education and other learning experiences in palliative care. ATLAS/ti software was used for data coding and analysis. Analysis of transcripts indicated that house staff learn little to nothing through formal education, to varying degrees from attending physicians and hospital staff, and mostly on the job and by making mistakes.

The Pedotopia Project: A Transdisciplinary Experiment in Soil Education

NASA Astrophysics Data System (ADS)

Toland, A.; Wessolek, G.

2012-04-01

In the absence of every-day interactions with the land, a hands-on, comprehensive soil education across disciplines and ages is necessary. Soil education is usually integrated into earth science and geography curricula and only rarely into social science, arts and humanities programs. Furthermore, an emphasis on measurement and modeling in conventional classroom science often neglects aesthetic, moral and other non-quantifiable values, precluding a broader cultural context in which soil education could take place. The arts play a vital role in communicating environmental issues to the greater public and represent a dynamic approach to help students discover soil complexity in new and unexpected ways. Artistic methods have recently been introduced as pedagogical tools in soil awareness-raising programs for children and youth. Painting with soil has become an interesting new approach to soil education from Kindergarten to University levels (SZLEZAK 2008). And a growing amount of literature describes artists who have undertaken different soil issues, suggesting that such artistic focus may improve wider understanding and appreciation of soil conservation issues (FELLER et al 2010, TOLAND & WESSOLEK 2010, WAGNER 2002). How can art contribute to soil science, policy and education - both with the aim of generating greater public understanding, but also by honing creative methods to confront problems such as contamination, erosion, and urban sprawl? What artistic approaches exist to protect and restore soils as well as our relationship to the land? And how can these approaches support current soil education goals? These questions were addressed in the transdisciplinary soil seminar, "Pedotopia - Re-sourcing Urban Soils" from September 2010 to September 2011 in Berlin. A cooperation between the Technical University of Berlin's Department of Soil Protection and the Berlin University of Arts' Institute for Art in Context, the project served as a teaching experiment as well

United against cancer: prevention to end-of-life care-highlights from the Uganda Cancer Institute-Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24-25 August 2017, Kampala, Uganda.

PubMed

Downing, Julia; Ddungu, Henry; Kiyange, Fatia; Batuli, Mwazi; Kafeero, James; Kebirungi, Harriet; Kiwanuka, Rose; Mugisha, Noleb; Mwebesa, Eddie; Mwesiga, Mark; Namukwaya, Elizabeth; Niyonzima, Nixon; Phipps, Warren; Orem, Jackson

2017-01-01

The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference on cancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patient care improved across Uganda and the region. The theme - United Against Cancer: Prevention to End-of-Life Care - reflected this joint vision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation and palliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importance of the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National Cancer Control Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rights and access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration; resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learning from each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognised, allowing for further networking between cancer and palliative care organisations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care.

Palliative or Comfort Care

MedlinePlus

... team usually includes: Palliative care doctors and nurses Social workers and chaplains Pharmacists and nutritionists Counselors and others This team works with your doctor and other health care providers ...

Preference for Palliative Care in Cancer Patients: Are Men and Women Alike?

PubMed

Saeed, Fahad; Hoerger, Michael; Norton, Sally A; Guancial, Elizabeth; Epstein, Ronald M; Duberstein, Paul R

2018-03-23

Men and those with low educational attainment are less likely to receive palliative care. Understanding these disparities is a high priority issue. In this study of advanced cancer patients, we hypothesized that men and those with lower levels of educational attainment would have less favorable attitudes toward palliative care. We performed a cross-sectional analysis of data collected from 383 patients at study entry in the Values and Options in Cancer Care (VOICE) clinical trial. Patients were asked about their preferences for palliative care if their oncologist informed them that further treatment would not be helpful. Palliative care was defined as "comfort care" that focuses on "quality of life, but not a cure." Response options were definitely no, possibly no, unsure, possibly yes, and definitely yes. Those preferring palliative care (definitely or possibly yes) were compared to all others. Predictors were patient gender and education level. Covariates included age, race, disease aggressiveness, and financial strain. Women were more likely [odds ratio (95% CI)] than men to prefer palliative care [3.07 (1.80-5.23)]. The effect of education on preferences for palliative care was not statistically significant [0.85 (0.48-1.48)]. Significant gender differences in patients' preferences for palliative care could partially account for gender disparities in end-of-life care. Interventions to promote palliative care among men could reduce these disparities. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

How Many Brains Does It Take to Build a New Light: Knowledge Management Challenges of a Transdisciplinary Project

ERIC Educational Resources Information Center

della Chiesa, Bruno; Christoph, Vanessa; Hinton, Christina

2009-01-01

The Organization for Economic Cooperation and Development's (OECD) Center for Educational Research and Innovation (CERI) carried out the "Learning Sciences and Brain Research" project (1999-2007) to investigate how neuroscience research can inform education policy and practice. This transdisciplinary project brought many challenges. Within the…

An Australian casemix classification for palliative care: technical development and results.

PubMed

Eagar, Kathy; Green, Janette; Gordon, Robert

2004-04-01

To develop a palliative care casemix classification for use in all settings including hospital, hospice and home-based care. 3866 palliative care patients who, in a three-month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. Each day of care was costed using actual cost data from each study site. Regression tree analysis was used to group episodes of care with similar costs and clinical characteristics. In the resulting classification, the Australian National Sub-acute and Non-acute Patient (AN-SNAP) Classification Version 1, the branch for classifying inpatient palliative care episodes (including hospice care) has 11 classes and explains 20.98% of the variance in inpatient palliative care phase costs using trimmed data. There are 22 classes in the ambulatory palliative care branch that explains 17.14% variation in ambulatory phase cost using trimmed data. The term 'subacute' is used in Australia to describe health care in which the goal--a change in functional status or improvement in quality of life--is a better predictor of the need for, and the cost of, care than the patient's underlying diagnosis. The results suggest that phase of care (stage of illness) is the best predictor of the cost of Australian palliative care. Other predictors of cost are functional status and age. In the ambulatory setting, symptom severity and the model of palliative care are also predictive of cost. These variables are used in the AN-SNAP Version 1 classification to create 33 palliative care classes. The classification has clinical meaning but the overall statistical performance is only moderate. The structure of the classification allows for it to be improved over time as models of palliative care service delivery develop.

Perceptions of palliative care among patients with advanced cancer and their caregivers

PubMed Central

Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

2016-01-01

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. PMID:27091801

World Health Organization Public Health Model: A Roadmap for Palliative Care Development.

PubMed

Callaway, Mary V; Connor, Stephen R; Foley, Kathleen M

2018-02-01

The Open Society Foundation's International Palliative Care Initiative (IPCI) began to support palliative care development in Central and Eastern Europe and the Former Soviet Union in 1999. Twenty-five country representatives were invited to discuss the need for palliative care in their countries and to identify key areas that should be addressed to improve the care of adults and children with life-limiting illnesses. As a public health concern, progress in palliative care requires integration into health policy, education and training of health care professionals, availability of essential pain relieving medications, and health care services. IPCI created the Palliative Care Roadmap to serve as a model for government and/or nongovernment organizations to use to frame the necessary elements and steps for palliative care integration. The roadmap includes the creation of multiple Ministry of Health-approved working groups to address: palliative care inclusion in national health policy, legislation, and finance; availability of essential palliative care medications, especially oral opioids; education and training of health care professionals; and the implementation of palliative care services at home or in inpatient settings for adults and children. Each working group is tasked with developing a pathway with multiple signposts as indicators of progress made. The roadmap may be entered at different signposts depending upon the state of palliative care development in the country. The progress of the working groups often takes place simultaneously but at variable rates. Based on our experience, the IPCI Roadmap is one possible framework for palliative care development in resource constrained countries but requires both health care professional engagement and political will for progress to be made. Copyright © 2017. Published by Elsevier Inc.

Pediatrician Ambiguity in Understanding Palliative Sedation at the End of Life.

PubMed

Henderson, Carrie M; FitzGerald, Michael; Hoehn, K Sarah; Weidner, Norbert

2017-02-01

Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives. This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation. Our survey was administered to pediatricians who care for children at the end of life. The survey assessed agreement with a definition of palliative sedation, as well as thoughts about its alignment with aggressive symptom management. Bivariate analyses using χ 2 and analysis of variance were calculated to determine the relationship between responses to closed-ended questions. Open-ended responses were thematically coded by the investigators and reviewed for agreement. Nearly half (48.6%) of the respondents indicated that the stated definition of palliative sedation "completely" reflected their own views. Respondents were split when asked if they viewed any difference between palliative sedation and aggressive symptom management: Yes (46%) versus No (54%). Open-ended responses revealed specifics about the nature of variation in interpretation. Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.

Water and Social Justice in Bangladesh: A Transdisciplinary and Intercultural Approach

NASA Astrophysics Data System (ADS)

Gilligan, J. M.; Ackerly, B.; Ahmed, K.; Benneyworth, L.; Goodbred, S. L.; Hall, M.; Jacobi, J. H.; Mondal, D. R.; Pickering, J.; Rogers, K. G.; Roy, K.; Wallace Auerbach, L.

2013-12-01

Effectively addressing environmental problems---at local, national, and global scales---requires actively crossing disciplinary boundaries between natural sciences, engineering, social sciences, and policymaking. The best technical solution is useless if it cannot win political support from the people it is intended to help. Enacted policies are too often hindered either by misunderstanding or ignorance of scientific and technical aspects of the problem or by misunderstanding the behavior of the population they address. Environmental problems at the international scale also require understanding of cultural and social differences across national boundaries. To prepare graduate students to be professionally effective at addressing major environmental problems, Vanderbilt University has created a transdisciplinary, intercultural course that brings students from the US and Bangladesh together, both through online connections such as blogs and Skype sessions, and in person in a week-long joint field trip in which students and faculty from universities in both countries, and representing many disciplines work side-by-side to study water as both a natural resource and a natural hazard. Activities included studying sources of drinking water, observing areas affected by flooding from cyclone storm surges, cataloging physical infrastructure, and conducting interviews with residents of vulnerable areas. Few if any students can simultaneously master the social sciences, natural sciences, and engineering skills necessary to comprehensively address major environmental problems, but students can learn to work and communicate effectively with peers in other disciplines, working together to understand the complex interactions between different aspects of their problem. We will report on the structure of the course; our experiences as faculty and student participants; and connections between this class, graduate curricula in environmental sciences, and international

[Importance of Anesthesiologists in the Work of a Palliative Care Team].

PubMed

Hozumi, Jun; Sumitani, Masahiko

2016-03-01

World Health Organization has proposed that palliative medicine should be applied early in the course of the malignant diseases. Regrettably, however, palliative care has been usually provided to patients with the advanced stage of cancer, as terminal care. Recently, palliative medicine begins at the time when patients are diagnosed with cancer. In response to changes in clinical settings of palliative medicine, anesthesiologists, with substantial experience in interdisciplinary pain management, can utilize their advantages in providing palliative medicine to cancer patients: 1) use of opioid analgesics; 2) considering the biopsychosocial model of pain; 3) helping patients live as actively as possible until death; and 4) helping the family cope with the patient's illness and their own bereavement.

A survey of palliative medicine education in Japan's undergraduate medical curriculum.

PubMed

Nakamura, Yoichi; Takamiya, Yusuke; Saito, Mari; Kuroko, Koichi; Shiratsuchi, Tatsuko; Oshima, Kenzaburo; Ito, Yuko; Miyake, Satoshi

2017-06-07

This study aimed to examine the status of undergraduate palliative care education among Japanese medical students using data from a survey conducted in 2015. 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. Responses returned by the universities were considered to indicate consent to participate. Descriptive statistical methodology was employed. The response rate was 82.5% (66 of 80 medical faculties and colleges). Palliative care lectures were implemented in 98.5% of the institutions. Regarding lecture titles, "palliative medicine," "palliative care," and "terminal care" accounted for 42.4, 30.3, and 9.1% of the lectures, respectively. Teachers from the Department of Anesthesia, Palliative Care, and Psychiatry administered 51.5, 47.0, and 28.8% of lectures, respectively. Subjects of lectures included general palliative care (81.8%), pain management (87.9%), and symptom management (63.6%). Clinical clerkship on palliative care was a compulsory and non-compulsory course in 43.9 and 25.8% of the schools, respectively; 30.3% had no clinical clerkship curriculum. Undergraduate palliative care education is implemented in many Japanese universities. Clinical clerkship combined with participation in actual medical practice should be further improved by establishing a medical education certification system in compliance with the international standards.

The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.

PubMed

Haarsma, Frederike; Moser, Albine; Beckers, Manon; van Rijswijk, Henk; Stoffers, Esther; Beurskens, Anna

2015-12-01

Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process. © 2014 John Wiley & Sons Ltd.

[For the betterment of home palliative care].

PubMed

Midorikawa, Yasuhiko; Iiduka, Masashi

2010-12-01

The problems we have identified to overcome for a betterment of home palliative care were as follows:(1) Staffs' low level of knowledge and a lack of interest in home care, (2) Lack of cooperation between hospital and clinic, (3) Hard to keep the medical and caregiver staffs employed in the home care settings and a technical training is behind, (4) Insufficient cooperative networks for elderly care and welfare in the region, and (5) Misunderstanding of home palliative care by patient, family and people in the region. It is important to solve these problems one by one for a betterment of home palliative care. In this paper, we reported these problems through actual activities of our hospital and Iwaki city, and we propose to deal with them.

Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.

PubMed

Klop, Hanna T; de Veer, Anke J E; van Dongen, Sophie I; Francke, Anneke L; Rietjens, Judith A C; Onwuteaka-Philipsen, Bregje D

2018-04-24

Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care. PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement. Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care. A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to

Improved knowledge of and difficulties in palliative care among physicians during 2008 and 2015 in Japan: Association with a nationwide palliative care education program.

PubMed

Nakazawa, Yoko; Yamamoto, Ryo; Kato, Masashi; Miyashita, Mitsunori; Kizawa, Yoshiyuki; Morita, Tatsuya

2018-02-01

Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program. This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample. This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P < .001; effect size, 0.40) and on the Palliative Care Difficulties Scale with total scores of 2.65 and 2.49, respectively (P < .001; effect size, 0.29). Propensity-score matching resulted in 619 untrained physicians matched to 619 trained physicians, and physicians who trained with the PEACE program had a higher knowledge score (74 vs 86; P < .001; effect size, 0.64) and a lower difficulties score (2.6 vs 2.3; P < .001; effect size, 0.42). Physicians' knowledge of and difficulties with palliative care improved on a national level. The PEACE program may have contributed to these improvements. Cancer 2018;124:626-35. © 2017 American Cancer Society. © 2017 American Cancer Society.

Development of a Palliative Education Assessment Tool for Medical Student Education.

ERIC Educational Resources Information Center

Meekin, Sharon Abele; Klein, Jason E.; Fleischman, Alan R.; Fins, Joseph J.

2000-01-01

Describes the Palliative Education Assessment Tool (PEAT), an innovative assessment to facilitate curricular mapping of palliative care education. The PEAT comprises seven palliative care domains, each of which details specific objectives of knowledge, skills, and attitudes. PEAT enables educators to describe a specific multidimensional aspect of…

A Survey of Hospice and Palliative Care Clinicians' Experiences and Attitudes Regarding the Use of Palliative Sedation.

PubMed

Maiser, Samuel; Estrada-Stephen, Karen; Sahr, Natasha; Gully, Jonathan; Marks, Sean

2017-09-01

A variety of terms and attitudes surround palliative sedation (PS) with little research devoted to hospice and palliative care (HPC) clinicians' perceptions and experiences with PS. These factors may contribute to the wide variability in the reported prevalence of PS. This study was designed to better identify hospice and palliative care (HPC) clinician attitudes toward, and clinical experiences with palliative sedation (PS). A 32-question survey was distributed to members of the American Academy of Hospice and Palliative Medicine (n = 4678). The questions explored the language clinicians use for PS, and their experiences with PS. Nine hundred thirty-six (20% response rate) responded to the survey. About 83.21% preferred the terminology of PS compared with other terms. A majority felt that PS is a bioethically appropriate treatment for refractory physical and nonphysical symptoms in dying patients. Most felt PS was not an appropriate term in clinical scenarios when sedation occurred as an unintended side effect from standard treatments. Hospice clinicians use PS more consistently and with less distress than nonhospice clinician respondents. Benzodiazepines (63.1%) and barbiturates (18.9%) are most commonly prescribed for PS. PS is the preferred term among HPC clinicians for the proportionate use of pharmacotherapies to intentionally lower awareness for refractory symptoms in dying patients. PS is a bioethically appropriate treatment for refractory symptoms in dying patients. However, there is a lack of clear agreement about what is included in PS and how the practice of PS should be best delivered in different clinical scenarios. Future efforts to investigate PS should focus on describing the clinical scenarios in which PS is utilized and on the level of intended sedation necessary, in an effort to better unify the practice of PS.

Review of palliative sedation and its distinction from euthanasia and lethal injection.

PubMed

Hahn, Michael P

2012-01-01

Palliative sedation evolved from within the practice of palliative medicine and has become adopted by other areas of medicine, such as within intensive care practice. Clinician's usually come across this practice for dying patients who are foregoing or having life support terminated. A number of intolerable and intractable symptom burdens can occur during the end of life period that may require the use of palliative sedation. Furthermore, when patients receive palliative sedation, the continued use of hydration and nutrition becomes an issue of consideration and there are contentious bioethical issues involved in using or withholding these life-sustaining provisions. A general understanding of biomedical ethics helps prevent abuse in the practice of palliative sedation. Various sedative drugs can be employed in the provision of palliative sedation that can produce any desired effect, from light sedation to complete unconsciousness. Although there are some similarities in the pharmacotherapy of palliative sedation, euthanasia, physician-assisted suicide, and lethal injection, there is a difference in how the drugs are administered with each practice. There are some published guidelines about how palliative sedation should be practiced, but currently there is not any universally accepted standard of practice.

Patterns of care in palliative radiotherapy: a population-based study.

PubMed

Murphy, James D; Nelson, Lorene M; Chang, Daniel T; Mell, Loren K; Le, Quynh-Thu

2013-09-01

Approximately one half of the radiotherapy (RT) prescribed in the United States is delivered with palliative intent. The purpose of this study was to investigate the patterns of delivery of palliative RT across the United States. Using the Surveillance, Epidemiology, and End Results-Medicare linked database, 51,610 patients were identified with incident stage IV breast, prostate, lung, or colorectal cancer diagnosed between 2000 and 2007 and observed through 2009. Multivariate logistic regression determined predictors of palliative RT. Forty-one percent of the study population received palliative RT, including 53% of patients with lung cancer, followed by those with breast (42%), prostate (40%), and colorectal cancers (12%). Multivariate analysis revealed that older patients (P<.001) and those with higher Charlson comorbidity scores (P<.001) were less likely to receive palliative RT. Black patients with prostate cancer were 20% less likely (P<.001), and black patients with colorectal cancer were 28% less likely (P<.001), than white patients to receive palliative RT. Among those treated with RT, 23% of patients with lung cancer died within 2 weeks of completing treatment, followed by those with colorectal (12%), breast (11%), and prostate cancers (8%). In addition to tumor site, significant predictors (P<.05) of death within 2 weeks of receiving RT included increased age, increased comorbidity, and male sex. Inequality in the receipt of palliative RT exists among the elderly and patients with comorbid conditions and varies with race. In addition, a significant number of patients die shortly after receiving RT. Understanding these patterns of care, along with further research into the underlying causes, will improve access and quality of palliative RT.

Opioid errors in inpatient palliative care services: a retrospective review.

PubMed

Heneka, Nicole; Shaw, Tim; Rowett, Debra; Lapkin, Samuel; Phillips, Jane L

2018-06-01

Opioids are a high-risk medicine frequently used to manage palliative patients' cancer-related pain and other symptoms. Despite the high volume of opioid use in inpatient palliative care services, and the potential for patient harm, few studies have focused on opioid errors in this population. To (i) identify the number of opioid errors reported by inpatient palliative care services, (ii) identify reported opioid error characteristics and (iii) determine the impact of opioid errors on palliative patient outcomes. A 24-month retrospective review of opioid errors reported in three inpatient palliative care services in one Australian state. Of the 55 opioid errors identified, 84% reached the patient. Most errors involved morphine (35%) or hydromorphone (29%). Opioid administration errors accounted for 76% of reported opioid errors, largely due to omitted dose (33%) or wrong dose (24%) errors. Patients were more likely to receive a lower dose of opioid than ordered as a direct result of an opioid error (57%), with errors adversely impacting pain and/or symptom management in 42% of patients. Half (53%) of the affected patients required additional treatment and/or care as a direct consequence of the opioid error. This retrospective review has provided valuable insights into the patterns and impact of opioid errors in inpatient palliative care services. Iatrogenic harm related to opioid underdosing errors contributed to palliative patients' unrelieved pain. Better understanding the factors that contribute to opioid errors and the role of safety culture in the palliative care service context warrants further investigation. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Characteristics and Outcomes of Psychology Referrals in Palliative Care Department.

PubMed

Ann-Yi, Sujin; Bruera, Eduardo; Wu, Jimin; Liu, Diane D; Agosta, Monica; Williams, Janet L; Balankari, Vishidha Reddy; Carmack, Cindy L

2018-06-06

Psychologists can provide unique contributions to interdisciplinary palliative care. Despite research indicating high distress in palliative care cancer patients, little has been reported regarding the feasibility and practice of psychology in this setting. To review the integration of clinical psychology practice in a palliative care department at a major comprehensive cancer center. Retrospective chart review of 1940 unique cancer patients (6451 total patient contacts) referred for psychology services provided by clinical psychologists in palliative care from 9/1/2013 to 2/29/2016. Psychologists provided services to 1644 in-patients (24% of palliative care in-patients) and 296 out-patients (19% of palliative care out-patients). The majority (85%) received services in the in-patient setting. Most patients were female (57%) and white (68%) with a variety of cancer diagnoses. Adjustment disorders were the most prevalent in both settings with significant differences in other DSM-5 diagnoses by service location (p<0.0001). Psychological assessment (86%) and supportive expressive counseling (79%) were the most frequent services provided in the initial consult. Duration of initial visit was significantly longer in out-patient (median=60 minutes) compared to in-patient setting (median=40 minutes) (p<.0001). No significant differences were noted between settings regarding the median number of counseling sessions per patient; however, the majority (70%) only received 1 or 2 sessions. Over time, total patient encounters increased in the in-patient setting (p<0.0001), while session lengths in both settings significantly decreased (p<0.0001). Palliative care psychology services successfully integrated into an interdisciplinary palliative care department and rapidly grew in both in-patient and out-patient settings. Copyright © 2018. Published by Elsevier Inc.

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities.

PubMed

Kavalieratos, Dio; Gelfman, Laura P; Tycon, Laura E; Riegel, Barbara; Bekelman, David B; Ikejiani, Dara Z; Goldstein, Nathan; Kimmel, Stephen E; Bakitas, Marie A; Arnold, Robert M

2017-10-10

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course. Published by Elsevier Inc.

A Community Needs Assessment for the Development of an Interprofessional Palliative Care Training Curriculum.

PubMed

Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith

2017-03-01

There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. Each phase incorporated a variety of settings and subjects. The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.

Palliative sedation at home in the Netherlands: a nationwide survey among nurses.

PubMed

Brinkkemper, Tijn; Klinkenberg, Marianne; Deliens, Luc; Eliel, Miriam; Rietjens, Judith A C; Zuurmond, Wouter W A; Perez, Roberto S G M

2011-08-01

This paper is a report of a nationwide study conducted to assess experiences of nurses involved in palliative sedation at home after introduction of a physicians' guideline for palliative sedation. Most studies investigating the practice of palliative sedation focus on physicians' practices and attitudes. However, little is known about experiences and attitudes of nurses. A web-based structured questionnaire was offered to 387 nurses providing medical technical care in 2007, assessing their experiences concerning decision-making, treatment policy and communication, focussing on the last patient receiving palliative sedation. The questionnaire was filled out by 201 nurses (response rate 52%). The majority of respondents agreed with the indication for palliative sedation. However, 21% reported to have refused carrying out a palliative sedation in the preceding year. The general practitioner was not present at the start of palliative sedation in a third of the cases, but was available when needed. The sedation was considered insufficiently effective by 42% of the respondents. According to a third of the respondents, the level of sedation was not related to the required level of symptom relief nor were changes in dosage based on the severity of symptoms. Although the guideline for palliative sedation appears to be followed adequately in the majority of cases with respect to indication for palliative sedation and reportage. The survey findings revealed shortcomings in medication policy, communication, medical control over the start and continued monitoring of palliative sedation. © 2011 The Authors. Journal of Advanced Nursing © 2011 Blackwell Publishing Ltd.

Palliative Care Training in Cardiology Fellowship: A National Survey of the Fellows.

PubMed

Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M

2018-02-01

To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.

Ideology and Palliative Care: Moral Hazards at the Bedside.

PubMed

Rhodes, Rosamond; Strain, James J

2018-01-01

Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals' attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.

Coverage and development of specialist palliative care services across the World Health Organization European Region (2005-2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries.

PubMed

Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

2016-04-01

The evolution of the provision of palliative care specialised services is important for planning and evaluation. To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region - home care teams, hospital support teams and inpatient palliative care services. Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. © The

Among neighbors: an ethnographic account of responsibilities in rural palliative care.

PubMed

Pesut, Barbara; Robinson, Carole A; Bottorff, Joan L

2014-04-01

Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding

Global warming in the palliative care research environment: adapting to change.

PubMed

Fainsinger, R L

2008-06-01

Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change.

'Palliative sedation'? A retrospective cohort study on the use and labelling of continuously administered sedatives on a palliative care unit.

PubMed

Schildmann, Eva; Pörnbacher, Sebastian; Kalies, Helen; Bausewein, Claudia

2018-03-01

Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit. Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23). Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol. Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups. The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.

Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

PubMed

Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser

2016-11-01

To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. Descriptive comparative study.
. Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. A convenience sample of 34 family members of dying patients receiving palliative sedation. 
. A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
. Experiences of family members and time.
. Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
. Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
. Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a

Why we need more poetry in palliative care.

PubMed

Davies, Elizabeth A

2018-03-23

Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research. A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care. I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community. Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Palliative sedation: a focus group study on the experiences of relatives.

PubMed

Bruinsma, Sophie; Rietjens, Judith; van der Heide, Agnes

2013-04-01

Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Focus groups and individual interviews. Various care settings in the Netherlands. A total of 14 relatives of patients who received palliative sedation until death participated. Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of "hastening death" as disadvantages of palliative sedation. Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.

Integrating palliative care into neurology services: what do the professionals say?

PubMed Central

Gao, Wei; Evans, Catherine J; Jackson, Diana; van Vliet, Liesbeth M; Byrne, Anthony; Crosby, Vincent; Groves, Karen E; Lindsay, Fiona; Higginson, Irene J

2018-01-01

Objectives Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service. Methods Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms. Results 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being ‘good/excellent’ by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being ‘poor/none’. Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness. Conclusions Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this. Trial registration number ISRCTN18337380; Pre-results. PMID:28774963

Palliative Care and Human Rights: A Decade of Evolution in Standards.

PubMed

Ezer, Tamar; Lohman, Diederik; de Luca, Gabriela B

2018-02-01

Human rights standards to address palliative care have developed over the last decade. This article aims to examine key milestones in the evolution of human rights standards to address palliative care, relevant advocacy efforts, and areas for further growth. The article provides an analysis of human rights standards in the context of palliative care through the lens of the right to health, freedom from torture and ill treatment, and the rights of older persons and children. Significant developments include the following: 1) the first human rights treaty to explicitly recognize the right to palliative care, the Inter-American Convention on the Rights of Older Persons; 2) the first World Health Assembly resolution on palliative care; 3) a report by the UN Special Rapporteur on Torture with a focus on denial of pain treatment; 4) addressing the availability of controlled medicines at the UN General Assembly Special Session on the World Drug Problem. Development of human rights standards in relation to palliative care has been most notable in the context of the right to health, freedom from torture and ill treatment, and the rights of older persons. More work is needed in the context of the rights of children, and human rights treaty bodies are still not consistently addressing state obligations with regards to palliative care. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care for Patients with Nonmalignant Respiratory Disease

PubMed Central

Gupta, Nishkarsh; Garg, Rakesh; Kumar, Vinod; Bharati, Sachidanand Jee; Mishra, Seema; Bhatnagar, Sushma

2017-01-01

Nonmalignant respiratory diseases are chronic and life-limiting conditions that need holistic palliative care. Such patients not only have a variety of physical symptoms such as dyspnea, pain, cough, depression, and anxiety, but also have a number of psychosocial and spiritual issues, which are not addressed to by us. This leads to a poor quality of life. Hence, these patients require supportive palliative care to relieve their sufferings, but unfortunately such care is not available to them in our country. In this article, we have tried to discuss the barriers to the provision of palliative care to such patients and suggested some measures to overcome them. PMID:28827944

[Palliative care: an example of Comparative Effectiveness Research?].

PubMed

Schmacke, Norbert

2012-01-01

Comparative Effectiveness Research (CER) seeks to establish treatment objectives and concepts striving to achieve patient relevant progress in therapy on the basis of published evidence. Using the example of palliative medicine and palliative care, respectively, it will be demonstrated that these two are under-researched areas of care. In addition, it will become clear that the success of this interdisciplinary treatment concept for the seriously ill must be weighed in the light of traditional clinical research - far beyond the cancer diagnosis. The current distinction between curative and palliative research and care urgently needs to be reconsidered. Copyright © 2012. Published by Elsevier GmbH.

One Health - Transdisciplinary Opportunities for SETAC Leadership in Integrating and Improving the Health of People, Animals, and the Environment

EPA Science Inventory

One Health is a collaborative, transdisciplinary effort working locally, nationally, and globally to improve health for people,animals, plants, and the environment. The term is relatively new (from ?2003), and it is increasingly common to see One Health included by name in interi...

Outcome evaluation of the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education: nationwide physician education project for primary palliative care in Japan.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Ohde, Sachiko; Tetsumi, Sato; Miyashita, Mitsunori

2015-01-01

Palliative care is an essential part of medicine, but most physicians have had no formal opportunity to acquire basic skills in palliative care. In Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched to provide formal primary palliative care education for all physicians engaged in cancer care. This study sought to determine whether PEACE could improve physicians' knowledge of, practices in, and difficulties with palliative care. In 2011, we conducted questionnaire-based surveys before, just after, and 2 months after completion of the PEACE program in physicians participating in the program at each of 15 designated cancer hospitals in Japan. Knowledge was measured using the palliative care knowledge questionnaire for PEACE (PEACE-Q). Practices and difficulties were evaluated using the Palliative Care self-reported Practice Scale (PCPS) and the Palliative Care Difficulties Scale (PCDS), respectively. Among 223 physicians participating in the program, 85 (38%) answered the follow-up survey. Significant improvements were noted on the PEACE-Q compared with baseline immediately after completion of the program, and this progress was maintained at 2 months (21.7 ± 5.56 versus 29.5 ± 2.10 versus 28.7 ± 3.28, respectively; p < 0.0001). Similarly, significant improvements were noted for total scores on both the PCPS and the PCDS at 2 months after completion of the program (62.1 ± 13.9 versus 69.6 ± 9.94 [p < 0.0001] for the PCPS; 44.4 ± 9.96 versus 39.4 ± 10.7 [p < 0.0001] for the PCDS). The PEACE education program improved physicians' knowledge of, practices in, and difficulties with palliative care.

Education, implementation, and policy barriers to greater integration of palliative care: A literature review.

PubMed

Aldridge, Melissa D; Hasselaar, Jeroen; Garralda, Eduardo; van der Eerden, Marlieke; Stevenson, David; McKendrick, Karen; Centeno, Carlos; Meier, Diane E

2016-03-01

Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. To provide an overview of the barriers to more widespread palliative care integration in the United States. A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness. © The Author(s) 2015.

Palliative Care Edema: Patient Population, Causal Factors, and Types of Edema Referred to a Specialist Palliative Care Edema Service.

PubMed

Real, Shirley; Cobbe, Sinead; Slattery, Sinead

2016-07-01

Edema in palliative care patients is a common symptom, however, the research base for all aspects of its care is extremely poor. To evaluate a specialist palliative care edema service in order to report on the patient population referred, the types of edema encountered, and the causes of edema. Prior to study, three different edema types were described for evaluation: lymphedema, nonlymphatic edema, and a combination of the two. Retrospective chart evaluation was completed from August 2013 through January 2014. Patients with edema assessed by the specialist palliative care physiotherapy edema service. Sixty-three cases were included, comprising 10.5% of all new palliative care referrals during the study period. Ninety-two percent (n = 58) had a diagnosis of cancer and 57% (n = 36) were female. Age ranged from 45-97 years. The most common edema type was a mixed edema (46%, n = 29), followed by lymphedema (27%, n = 18) and nonlymphatic edema (16%, n = 10). Lymphorrhea occurred in 9.5% of cases. The most common reasons for edema, based on clinical opinion, were blocked lymphatics (33%) and dependency from immobility (27%). The most common site for edema was in the lower limbs (89%, n = 56). The time lapse from the last treatment to death ranged from 1-225 days. Having a mixed edema type or lymphorrhea was a relatively poor prognostic sign. This is the first study to describe in detail the occurrence of edema in palliative care patients. Edema may be present for many months prior to death making the search for effective treatments imperative.

United against cancer: prevention to end-of-life care—highlights from the Uganda Cancer Institute–Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24–25 August 2017, Kampala, Uganda

PubMed Central

Downing, Julia; Ddungu, Henry; Kiyange, Fatia; Batuli, Mwazi; Kafeero, James; Kebirungi, Harriet; Kiwanuka, Rose; Mugisha, Noleb; Mwebesa, Eddie; Mwesiga, Mark; Namukwaya, Elizabeth; Niyonzima, Nixon; Phipps, Warren; Orem, Jackson

2017-01-01

The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference on cancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patient care improved across Uganda and the region. The theme – United Against Cancer: Prevention to End-of-Life Care – reflected this joint vision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation and palliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importance of the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National Cancer Control Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rights and access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration; resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learning from each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognised, allowing for further networking between cancer and palliative care organisations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care. PMID:29290759

Intention, procedure, outcome and personhood in palliative sedation and euthanasia.

PubMed

Materstvedt, Lars Johan

2012-03-01

Palliative sedation at the end of life has become an important last-resort treatment strategy for managing refractory symptoms as well as a topic of controversy within palliative care. Furthermore, palliative sedation is prominent in the public debate about the possible legalisation of voluntary assisted dying (physician-assisted suicide and euthanasia). This article attempts to demonstrate that palliative sedation is fundamentally different from euthanasia when it comes to intention, procedure, outcome and the status of the person. Nonetheless, palliative sedation in its most radical form of terminal deep sedation parallels euthanasia in one respect: both end the experience of suffering. However, only the latter intentionally ends life and also has this as its goal. There is the danger that deep sedation could bring death forward in time due to particular side effects of the treatment. Still that would, if it happens, not be intended, and accordingly is defensible in view of the doctrine of double effect.

Palliative care in advanced dementia.

PubMed

Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

2014-08-01

Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.

Palliative Workforce Development and a Regional Training Program.

PubMed

O'Mahony, Sean; Levine, Stacie; Baron, Aliza; Johnson, Tricia J; Ansari, Aziz; Leyva, Ileana; Marschke, Michael; Szmuilowicz, Eytan; Deamant, Catherine

2018-01-01

Our primary aims were to assess growth in the local hospital based workforce, changes in the composition of the workforce and use of an interdisciplinary team, and sources of support for palliative medicine teams in hospitals participating in a regional palliative training program in Chicago. PC program directors and administrators at 16 sites were sent an electronic survey on institutional and PC program characteristics such as: hospital type, number of beds, PC staffing composition, PC programs offered, start-up years, PC service utilization and sources of financial support for fiscal years 2012 and 2014. The median number of consultations reported for existing programs in 2012 was 345 (IQR 109 - 2168) compared with 840 (IQR 320 - 4268) in 2014. At the same time there were small increases in the overall team size from a median of 3.2 full time equivalent positions (FTE) in 2012 to 3.3 FTE in 2013, with a median increase of 0.4 (IQR 0-1.0). Discharge to hospice was more common than deaths in the acute care setting in hospitals with palliative medicine teams that included both social workers and advanced practice nurses ( p < .0001). Given the shortage of palliative medicine specialist providers more emphasis should be placed on training other clinicians to provide primary level palliative care while addressing the need to hire sufficient workforce to care for seriously ill patients.

Leveraging the Health and Retirement Study To Advance Palliative Care Research

PubMed Central

Langa, Kenneth M.; Smith, Alexander K.; Cagle, John; Ornstein, Katherine; Silveira, Maria J.; Nicholas, Lauren; Covinsky, Kenneth E.; Ritchie, Christine S.

2014-01-01

Abstract Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research. PMID:24694096

Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

PubMed

Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

2018-04-01

To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P < .001). The mean length of stay in the hospital was similar for patients seen by palliative care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

Funding models in palliative care: Lessons from international experience

PubMed Central

Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM

2017-01-01

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188

Funding models in palliative care: Lessons from international experience.

PubMed

Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em

2017-04-01

Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

National survey of perspectives of palliative radiation therapy: role, barriers, and needs.

PubMed

McCloskey, Susan A; Tao, May Lin; Rose, Christopher M; Fink, Arlene; Amadeo, Alessandra M

2007-01-01

Despite growth of palliative care programs and evidence on the effectiveness of radiotherapy in palliating cancer symptoms, radiotherapy is probably underused in this setting. Radiation and medical oncologists and palliative medicine specialists were surveyed regarding the perceived role of palliative radiotherapy and barriers to its use. The survey was sent electronically to all physician members of the American Society for Therapeutic Radiology and Oncology (ASTRO) and the American Academy of Hospice and Palliative Medicine (AAHPM) and a random sample of American Society of Clinical Oncology (ASCO) members, with known e-mail addresses. Response rates were 27%, 14% and 26% for ASTRO, ASCO, and AAHPM respondents, respectively. Although most felt radiotherapy is an effective and important option for palliation of some common cancer symptoms, referrals for such therapy may be declining. Most agreed that radiation oncologists should be more involved in palliative care; however, multiple barriers were identified, such as poor reimbursement, emotional burden of care, insufficient training/knowledge, and the sense of unwillingness of others to share delivery of such services. Although multiple barriers limit optimal integration, most agree that there should be greater national and professional society efforts to promote the advancement of radiation oncology in the area of palliative care.

Nationwide Survey of Palliative Care for Patients With Heart Failure in Japan.

PubMed

Kuragaichi, Takashi; Kurozumi, Yuma; Ohishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito

2018-04-25

Palliative care for heart failure (HF) patients is recommended in Western guidelines, so this study aimed to clarify the current status of palliative care for HF patients in Japan.Methods and Results:A survey was sent to all Japanese Circulation Society-authorized cardiology training hospitals (n=1,004) in August 2016. A total of 544 institutions (54%) returned the questionnaire. Of them, 527 (98%) answered that palliative care is necessary for patients with HF. A total of 227 (42%) institutions held a palliative care conference for patients with HF, and 79% of the institutions had <10 cases per year. Drug therapy as palliative care was administered at 403 (76%) institutions; morphine (87%) was most frequently used. Among sedatives, dexmedetomidine (33%) was administered more often than midazolam (29%) or propofol (20%). Regarding the timing of end-of-life care, most institutions (84%) reported having considered palliative care when a patient reached the terminal stage of HF. Most frequently, the reason for the decision at the terminal stage was "difficulty in discontinuing cardiotonics." A major impediment to the delivery of palliative care was "difficulty predicting an accurate prognosis." This large-scale survey showed the characteristics of palliative care for HF in Japan. The present findings may aid in the development of effective end-of-life care systems.

National Trends (2009-2013) for Palliative Care Utilization for Patients Receiving Prolonged Mechanical Ventilation.

PubMed

Chatterjee, Kshitij; Goyal, Abhinav; Kakkera, Krishna; Harrington, Sarah; Corwin, Howard L

2018-05-04

Patients requiring mechanical ventilation have high morbidity and mortality. Providing palliative care services has been suggested as a way to improve comprehensive management of critically ill patients. We examined the trend in the utilization of palliative care among adults who require prolonged mechanical ventilation. Primary objectives were to determine the trend in palliative care utilization over time, predictors for palliative care utilization, and palliative care impact on hospital length of stay. Retrospective, cross-sectional study. The National Inpatient Sample data between 2009 and 2013 was used for this study. Adults (age ≥ 18 yr) who underwent prolonged mechanical ventilation (≥ 96 consecutive hr) were studied. Palliative care and mechanical ventilation were identified using the corresponding International Classification of Diseases, 9th revision, Clinical Modification, codes. A total of 1,751,870 hospitalizations with prolonged mechanical ventilation were identified between 2009 and 2013. The utilization of palliative care increased yearly from 6.5% in 2009 to 13.1% in 2013 (p < 0.001). Among the mechanically ventilated patients who died, palliative care increased from 15.9% in 2009 to 33.3% in 2013 (p < 0.001). Median hospital length of stay for patients with and without palliative care was 13 and 17 days, respectively (p < 0.001). Patients discharged to either short- or long-term care facilities had a shorter length of stay if palliative care was provided (15 vs 19 d; p < 0.001). The factors associated with a higher palliative care utilization included older age, malignancy, larger hospitals in urban areas, and teaching hospitals. Non-Caucasian race was associated with lower palliative care utilization. Among patients who undergo prolonged mechanical ventilation, palliative care utilization is increasing, particularly in patients who die during hospitalization. Using palliative care for mechanically ventilated patients who are discharged to

Internal Medicine Residents' Beliefs, Attitudes, and Experiences Relating to Palliative Care: A Qualitative Study.

PubMed

Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J

2017-05-01

Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.

Patterns of Palliative Care Referral in Patients Admitted With Heart Failure Requiring Mechanical Ventilation.

PubMed

Wiskar, Katie J; Celi, Leo Anthony; McDermid, Robert C; Walley, Keith R; Russell, James A; Boyd, John H; Rush, Barret

2018-04-01

Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized. To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral. Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not. Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison. Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P < .01). In comparison, rate of palliative care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P < .01). In a multivariate logistic regression model, higher socioeconomic status (SES) was associated with increased access to palliative care ( P < .01). Racial differences were also observed in rates of referral to palliative care. The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.

Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media.

PubMed

Claudio, Celeste H; Dizon, Zoelle B; October, Tessie W

2018-01-01

Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. A cross-sectional study of "palliative care" search results. Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.

A Nationwide Survey About Palliative Sedation Involving Japanese Palliative Care Specialists: Intentions and Key Factors Used to Determine Sedation as Proportionally Appropriate.

PubMed

Hamano, Jun; Morita, Tatsuya; Ikenaga, Masayuki; Abo, Hirofumi; Kizawa, Yoshiyuki; Tunetou, Satoru

2018-03-01

Although there has long been debate about physicians' intentions and what physicians consider to be proportionally appropriate when performing palliative sedation, few large studies have been performed. To identify physicians' intentions when starting continuous deep sedation and to clarify what factors determine whether physicians regard sedation as proportionally appropriate in relation to expected survival, the patients' wishes, and refractoriness. A nationwide questionnaire survey of Japanese palliative care specialists was performed from August to December 2016. We defined continuous deep sedation as the continuous use of sedatives to relieve intolerable and refractory symptoms with the loss of consciousness until death. Of the 695 palliative care specialists enrolled, 440 were analyzed (response rate, 69%). A total of 95% and 87% of the physicians reported that they explicitly intended to perform symptom palliation and decrease consciousness levels, respectively. Moreover, 38% answered that they explicitly intended to maintain unconsciousness until death, and 11% reported that they intended to shorten survival to some extent. The respondents considered that continuous deep sedation is more appropriate when the predicted survival is shorter, the patients' wishes are consistent and clear, and confidence in the refractoriness of symptoms is higher. Japanese palliative care specialists explicitly intend to control symptoms and reduce the level of consciousness when performing continuous deep sedation, but there are differences in their intentions with regard to maintaining unconsciousness until death. Predicted survival, patients' wishes, and confidence in refractoriness are associated with physicians' judgment that sedation is proportionally appropriate. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Qualitative research in palliative care 1990-1999: a descriptive review.

PubMed

Froggatt, Katherine A; Field, David; Bailey, Chris; Krishnasamy, Meinir

2003-03-01

A collaborative, evaluative review of qualitative research in palliative care published between 1990 and 1999 has been conducted. Nearly 30,000 articles in 48 journals from specialist palliative care, oncology, death studies, medicine, nursing, gerontology, health and the social sciences were examined. From these journals, 138 articles (0.5%) reporting qualitative research with a focus on palliative care in the context of death, dying or bereavement were identified. These articles were reviewed using a proforma designed by the group. This article describes the review process, and the following findings: the distribution of different forms of qualitative research in palliative care; the location of such papers; the focus of the research; and the research methodology and methods adopted.

Branding Palliative Care Units by Avoiding the Terms “Palliative” and “Hospice”

PubMed Central

Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term “palliative care” has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term “supportive care” instead of “palliative care” in naming palliative care units has been proposed in several studies. In Taiwan, terms other than “palliative” and “hospice” are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms “palliative” and “hospice” in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms “palliative” and “hospice” in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term “palliative,” while 25.2% (n = 14) included the term “hospice.” Religiously affiliated hospitals were less likely to use the terms “palliative” and “hospice” (χ2 = 11.461, P = .001). There was also a lower prevalence of use of the terms “palliative” and “hospice” for naming palliative care units in private hospitals than in public hospitals (χ2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms “palliative” and “hospice” in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon. PMID:28140730

On the parallels between cosmology and astrobiology: a transdisciplinary approach to the search for extraterrestrial life

NASA Astrophysics Data System (ADS)

Santos, Charles Morphy D.; Alabi, Leticia P.; Friaça, Amâncio C. S.; Galante, Douglas

2016-10-01

The establishment of cosmology as a science provides a parallel to the building-up of the scientific status of astrobiology. The rise of astrobiological studies is explicitly based on a transdisciplinary approach that reminds of the Copernican Revolution, which eroded the basis of a closed Aristotelian worldview and reinforced the notion that the frontiers between disciplines are artificial. Given the intrinsic complexity of the astrobiological studies, with its multifactorial evidences and theoretical/experimental approaches, multi- and interdisciplinary perspectives are mandatory. Insulated expertise cannot grasp the vastness of the astrobiological issues. This need for integration among disciplines and research areas is antagonistic to excessive specialization and compartmentalization, allowing astrobiology to be qualified as a truly transdisciplinary enterprise. The present paper discusses the scientific status of astrobiological studies, based on the view that every kind of life, Earth-based or not, should be considered in a cosmic context. A confluence between 'astro' and 'bio' seeks the understanding of life as an emerging phenomenon in the universe. Thus, a new epistemological niche is opened, pointing to the development of a pluralistic vision for the philosophy of astrobiology.

The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography.

PubMed

Williams-Reade, Jackie; Lamson, Angela L; Knight, Sharon M; White, Mark B; Ballard, Sharon M; Desai, Priti P

2015-04-01

Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center. In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families. Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support. The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.

ICU Bedside Nurses' Involvement in Palliative Care Communication: A Multicenter Survey.

PubMed

Anderson, Wendy G; Puntillo, Kathleen; Boyle, Deborah; Barbour, Susan; Turner, Kathleen; Cimino, Jenica; Moore, Eric; Noort, Janice; MacMillan, John; Pearson, Diana; Grywalski, Michelle; Liao, Solomon; Ferrell, Bruce; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Mitchell, William; Pantilat, Steven

2016-03-01

Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. To describe the perspectives of ICU bedside nurses on their involvement in palliative care communication. A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Progress in palliative care in Israel: comparative mapping and next steps

PubMed Central

2012-01-01

Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs. PMID:22913773

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

PubMed

Cain, Cindy L; Surbone, Antonella; Elk, Ronit; Kagawa-Singer, Marjorie

2018-05-01

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Association Between Palliative Care and Patient and Caregiver Outcomes

PubMed Central

Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J. Nicholas; Ernecoff, Natalie C.; Hanmer, Janel; Hoydich, Zachariah P.; Ikejiani, Dara Z.; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C.; Arnold, Robert M.; Heller, Lucas; Schenker, Yael

2017-01-01

IMPORTANCE The use of palliative care programs and the number of trials assessing their effectiveness have increased. OBJECTIVE To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. DATA SOURCES MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. STUDY SELECTION Randomized clinical trials of palliative care interventions in adults with life-limiting illness. DATA EXTRACTION AND SYNTHESIS Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy–palliative care scale (FACIT-Pal) instrument (range, 0–184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0–90 [best-worst]; MCID, 5.7 points). MAIN OUTCOMES AND MEASURES Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. RESULTS Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95%CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, −0.66; 95%CI, −1.25 to −0.07; ESAS mean difference, −10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated

Burnout among physicians in palliative care: Impact of clinical settings.

PubMed

Dréano-Hartz, Soazic; Rhondali, Wadih; Ledoux, Mathilde; Ruer, Murielle; Berthiller, Julien; Schott, Anne-Marie; Monsarrat, Léa; Filbet, Marilène

2016-08-01

Burnout syndrome is a work-related professional distress. Palliative care physicians often have to deal with complex end-of-life situations and are at risk of presenting with burnout syndrome, which has been little studied in this population. Our study aims to identify the impact of clinical settings (in a palliative care unit (PCU) or on a palliative care mobile team (PCMT)) on palliative care physicians. We undertook a cross-sectional study using a questionnaire that included the Maslach Burnout Inventory (MBI), and we gathered sociodemographic and professional data. The questionnaire was sent to all 590 physicians working in palliative care in France between July of 2012 and February of 2013. The response rate was 61, 8% after three reminders. Some 27 (9%) participants showed high emotional exhaustion, 12 (4%) suffered from a high degree of depersonalization, and 71 (18%) had feelings of low personal accomplishment. Physicians working on a PCMT tended (p = 0.051) to be more likely to suffer from emotional exhaustion than their colleagues. Physicians working on a PCMT worked on smaller teams (fewer physicians, p < 0.001; fewer nonphysicians, p < 0.001). They spent less time doing research (p = 0.019), had fewer resources (p = 0.004), and their expertise seemed to be underrecognized by their colleagues (p = 0.023). The prevalence of burnout in palliative care physicians was low and in fact lower than that reported in other populations (e.g., oncologists). Working on a palliative care mobile team can be a more risky situation, associated with a lack of medical and paramedical staff.

The Cambia Sojourns Scholars Leadership Program: Conversations with Emerging Leaders in Palliative Care.

PubMed

Cruz-Oliver, Dulce M; Bernacki, Rachelle; Cooper, Zara; Grudzen, Corita; Izumi, Seiko; Lafond, Deborah; Lam, Daniel; LeBlanc, Thomas W; Tjia, Jennifer; Walter, Jennifer

2017-08-01

There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs. This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs. After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology. Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader. Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future. Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.

Requests from professional care providers for consultation with palliative care consultation teams.

PubMed

Groot, Marieke M; Vernooij-Dassen, Myrra J F J; Courtens, Annemie M; Kuin, Annemieke; van der Linden, Barbara A; van Zuylen, Lia; Crul, Ben J P; Grol, Richard P T M

2005-11-01

Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care. As part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care. Professional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables. The results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.

Measuring patients' experiences with palliative care: the Consumer Quality Index Palliative Care.

PubMed

Claessen, Susanne J J; Francke, Anneke L; Sixma, Herman J; de Veer, Anke J E; Deliens, Luc

2012-12-01

The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to answers about the importance of certain aspects of care. To improve the chance that the new instrument has good content validity, a literature study and individual and group discussions were performed, and a steering committee was consulted to establish the instrument's face and content validity. The questionnaire was administered to patients with a life expectancy of 6 months or less and/or who were receiving palliative treatment. Descriptive analyses were carried out on the items about actual care experiences and the importance of care aspects, and on 'need for improvement' scores. 15 care organisations participated. 133 patients met the inclusion criteria (net response n=85). Patients considered the following aspects the most important: 'offering help in good time in acute situations', 'caregivers having the necessary expertise' and 'caregivers taking the patient seriously'. The three care aspects with the highest 'need for improvement' scores were: 'support when the patient feels depressed', 'support when the patient is anxious' and 'support when the patient has shortness of breath'. The CQ-index PC provides opportunities for care organisations to assess which care aspects have the highest priority for quality improvement within their organisation. Further research is needed to assess whether the instrument has enough discriminative power to assess differences between organisations.

A systematic literature review on the ethics of palliative sedation: an update (2016).

PubMed

Henry, Blair

2016-09-01

Palliative sedation has been the subject of intensive debate since its first appearance in 1990. In a 2010 review of palliative sedation, the following areas were identified as lacking in consensus: inconsistent terminology, its use in nonphysical suffering, the ongoing experience of distress, and concern that the practice of palliative sedation may hasten death. This review looks at the literature over the past 6 years and provides an update on these outstanding concerns. Good clinical guidelines and policies are still required to address issues of emotional distress and waylay concerns that palliative sedation hastens death. The empirical evidence suggests some movement toward consensus on the practice of palliative sedation. However, a continued need exists for evidence-informed practice guidelines, education, and research to support the ethical practice of palliative sedation at the end of life. Until that time, clinicians are advised to adopt a framework or guideline that has been expert driven to ensure consistent and ethical use of palliative sedation at the end of life.

Developing rural palliative care: validating a conceptual model.

PubMed

Kelley, Mary Lou; Williams, Allison; DeMiglio, Lily; Mettam, Hilary

2011-01-01

The purpose of this research was to validate a conceptual model for developing palliative care in rural communities. This model articulates how local rural healthcare providers develop palliative care services according to four sequential phases. The model has roots in concepts of community capacity development, evolves from collaborative, generalist rural practice, and utilizes existing health services infrastructure. It addresses how rural providers manage challenges, specifically those related to: lack of resources, minimal community understanding of palliative care, health professionals' resistance, the bureaucracy of the health system, and the obstacles of providing services in rural environments. Seven semi-structured focus groups were conducted with interdisciplinary health providers in 7 rural communities in two Canadian provinces. Using a constant comparative analysis approach, focus group data were analyzed by examining participants' statements in relation to the model and comparing emerging themes in the development of rural palliative care to the elements of the model. The data validated the conceptual model as the model was able to theoretically predict and explain the experiences of the 7 rural communities that participated in the study. New emerging themes from the data elaborated existing elements in the model and informed the requirement for minor revisions. The model was validated and slightly revised, as suggested by the data. The model was confirmed as being a useful theoretical tool for conceptualizing the development of rural palliative care that is applicable in diverse rural communities.

Palliative care knowledge, attitudes and perceived self-competence of nurses working in Vietnam.

PubMed

Nguyen, Ly Thuy; Yates, Patsy; Osborne, Yvonne

2014-09-01

To explore palliative care knowledge, attitudes and perceived self-competence of nurses working in oncology settings in Hanoi, Vietnam. The study employed a cross-sectional descriptive survey design. The self-administered questionnaires consisted of three validated instruments: the Expertise and Insight Test for Palliative Care, the Attitude Toward Care of the Dying Scale B and the Palliative Care Nursing Self Competence Scale. The sample consisted of 251 nurses caring for cancer patients in three oncology hospitals in Vietnam. The responses identified low scores in nurses' palliative care knowledge related to pain and other symptom management and psychological and spiritual aspects. Nurses' responses reflected discomfort in communicating about death and establishing therapeutic relationship with oncology patients who require palliative care. Additionally, nurses reported low scores in perceived self-competence when providing pain management and addressing social and spiritual domains of palliative care. The findings also revealed that nurses who had higher palliative care knowledge scores demonstrated attitudes which were more positive and expressed greater perceived self-competence. Nurses working in oncology wards need more education to develop their knowledge and skills of palliative care, especially in the areas of pain management, psychological and spiritual care, and communication.

Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff.

PubMed

Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F

2018-02-01

To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and

Design of a nationwide survey on palliative care for end-stage heart failure in Japan.

PubMed

Kurozumi, Yuma; Oishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito

2018-02-01

The term palliative care has historically been associated with support for individuals with advanced incurable cancer, so cardiologists and cardiac nurses may be unfamiliar with its principles and practice. However, palliative care is now a part of end-stage heart failure management. We conducted the first nationwide survey to investigate the status of palliative care for heart failure in Japan. A self-reported questionnaire was mailed to all Japanese Circulation Society - authorized cardiology training hospitals (n=1004) in August 2016. The response deadline was December 2016. The survey focused on the following topics: basic information about the facility and multidisciplinary team, patient symptoms for palliative care, positive outcomes after providing palliative care, drug therapy as palliative care for patients with heart failure, advance care planning with patients and their families, and impediments to providing palliative care to patients with heart failure. The results of the survey will be reported in detail elsewhere. Current guidelines on palliative care do not specifically address what team members should be involved, what drugs should be used, or when palliative care should be started. This survey collected information to improve the quality of palliative care and provide more specialized palliative care within the limits of resources. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

Improving palliative care outcomes for Aboriginal Australians: service providers' perspectives.

PubMed

Shahid, Shaouli; Bessarab, Dawn; van Schaik, Katherine D; Aoun, Samar M; Thompson, Sandra C

2013-07-23

Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers' experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the 'cultural security' framework. Thematic analysis was carried out that identified patterns within data. Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people's willingness and

Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

PubMed Central

2013-01-01

Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to

The diverse landscape of palliative care clinics.