Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.
This chapter provides an overview or “roadmap” to behavioral intervention research in hospice and palliative care. It begins with an introduction to key concepts that will be explored throughout the book, defining the book’s scope and overarching purpose. Next, it outlines a model of behavioral intervention research in hospice and palliative care, emphasizing the keystone concepts of stakeholder engagement, cultural congruence, ethical conduct of research, and inclusion of interdisciplinary perspectives. The chapter concludes with a brief explanation of the book’s organization and an outline of the content presented in each subsequent chapter.
This chapter focuses on the design phase of the behavioral intervention research model. Once a problem is identified and understood, it is time to find or develop an intervention that may address the problem. A theory or a conceptual model often informs the hypothesized solution for a problem. Thus, this chapter also covers the purposes of theories and conceptual models and the differences between the two concepts. Finally, the chapter addresses the issues to be considered in the design of interventions for research in hospice and palliative care, focusing on the different settings where palliative care is delivered.
BACKGROUND: Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted.
AIM: To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care.
DESIGN: The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care.
DATA SOURCES: The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken.
CONCLUSION: Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.
I read with interest Drs. Fins and Bernat's excellent discussion on the ethical, palliative, and health care policy considerations arising from the American Academy of Neurology Guideline on Disorders of Consciousness. I share the reservation of the authors regarding the adoption of the term unresponsive wakefulness syndrome (UWS) in lieu of the vegetative state (VS). The term UWS inadvertently risks conveying to the general public that some of these patients will improve and become better.
Most people avoid talking about death with children even when required, as they are unsure at what age children start understanding the concept of death. Although this question has been researched in the west, it has not been answered in the Indian context. Therefore, this study was conducted in India with 25 children (14 females, 11 males; 3-5 years), using play and joint story construction method, along with semistructured interviews. Results indicated that majority of the children understood that everyone has to die, including significant people like their own parents (i.e., universality) and also, many children understood that death is final (i.e., irreversibility). However, only few children understood that all cognitive/behavioral functions cease at death (i.e., nonfunctionality). In conclusion, only a small proportion of preschoolers seems to have had a mature concept of death.
Leading medical authorities advocate for routine integration of palliative care for all major causes of death in the United States. With rapid growth and acceptance, the field of palliative care is tasked with addressing a compelling question of its time: "Who will deliver timely, evidence-based palliative care to all who should benefit?" The current number of palliative care specialists will not suffice to meet the needs of persons with serious illness. In 2010, initial estimates quantified the shortage at 6000 to 18 000 additional palliative care physicians needed to fully staff existing programs. Unfortunately, the predicted number of specialty physicians in 2030 will likely not be larger than the workforce in existence today. These findings result in a physician-to-serious-illness-person ratio of about 1:28 000 in 2030.1 To address the workforce shortage, stronger alignment is needed between intensity of patient needs and provision of palliative care services. Such an alignment better harnesses the talents of those in a position to deliver core palliative care services (such as discussing goals of care with patients or managing their symptoms) while engaging palliative care specialists to address more complex issues. We introduce the concept of "Palliative Care Champions," who sit at the nexus between specialty palliative care and the larger clinical workforce. Acknowledging that the needs of most patients can be met by clinicians who have received basic palliative care training, and that specialty palliative care is not always available for those with more complex needs, there exists an important opportunity for those with additional interest to scale training and quality improvement to fill this void.
Efforts to clarify suicide terminology fail to address nuances in suicide-related communication, often relying on poorly-defined terms or implying communication exists primarily as manipulation. In the present paper, we review examples from existing literature and explore how personal suicide-related communication differs from prevention and exposure communication. We also separate definitions for five common types of personal-suicide-related communication: (a) suicide-related disclosure, (b) suicide-related notification, (c) unintended suicide-related communication, (d) coerced suicide-related communication, and (e) conditional suicide-related communication. Finally, we provide specific ways in which standardized definitions can enhance both research and clinical efforts in the future.
The spiritual dimension is considered to be a central component of palliative care. However, healthcare professionals have difficulties incorporating the spiritual dimension into their everyday practice. We propose a new approach by looking beyond the mere functionality of care practices. Rituals and ritualized practices can serve to express and communicate meanings and values. This article explores how ritualized practices have the ability to open up space for the spiritual dimension of care in the context of palliative care.
AIMS: To develop a culturally relevant conceptual map to discover perceptions of a statutory form of advance directive for Hong Kong Chinese.
DESIGN: This was the first study on advance directive using a concept mapping approach with two phases.
METHODS: The data collection of the two phases were conducted from February 2016 - February 2017. In Phase I, 96 participants were recruited using purposive sampling. In Phase II, multi-dimensional scaling and hierarchical cluster analysis were used to create a concept map based on quantitative data.
RESULTS: The map depicted six clusters of factors affecting the acceptance of advance directive, with their importance rating in decreasing order: Conditional factor, value system, process of AD, physical and illness factor, personal situation factor and socio-cultural factor.
CONCLUSION: The study adopted a comprehensive approach to unfolding the multi-faceted factors affecting the acceptance of advance directives by stakeholders. Strategies targeting the clusters could be developed to facilitate the discussion and completion of advance directive.
Background and Aim: With chronic diseases on the rise, there is a growing demand for palliative care. The global landscape of the integration of palliative care into health-care systems is incipient, which leads to a lack of social awareness of this reality and consequently, to communication failures, particularly a conspiracy of silence. The aim of this study was to analyze the concept of conspiracy of silence in palliative care.
Materials and Methods: Walker and Avant method of concept analysis was used. Review and synthesis of literature supported the analysis process. Forty-seven articles were analyzed.
Results: Results showed that the conspiracy of silence in palliative care is a communication failure, typical of limited life expectancy prognosis, and involves patients, their families, and health-care teams. Lack of autonomy, overburden, family malfunctioning and coping, and health-care dehumanization are consequences of the conspiracy of silence in palliative care.
Conclusions: The present study had found that scales to measure this concept as well as interventions that consider important factors in the communication process in palliative care identified in this analysis are needed.
The current conceptual review sought to identify and describe how the end of life was conceptualized and operationalized in top-ranking, peer-reviewed social work journals considering the highly individualized and multidimensional experience of dying put forth by modern scholars and social work practitioners. An iterative content analysis of included articles (N = 103) revealed six themes within reported definitions and four themes within eligibility criteria. Definitions (n = 66) related to treatment responsiveness, the death process, dying, prognosis, admission to specific services, and old age. Eligibility criteria (n = 18) related to proxy assessment, diagnosis, prognosis, and functional ability assessments. Over one-third of included articles did not define what was meant by the end of life (36%; n = 37) and the majority did not include eligibility criteria (83%; n = 85). In conclusion, the complex lived experience of dying was not manifest within included articles raising important implications for research (e.g., measurement, meta-analysis) and social work practice (viz. service eligibility).
BACKGROUND: The concept of complexity is used in palliative care (PC) to describe the nature of patients' situations and the extent of resulting needs and care demands. However, the term or concept is not clearly defined and operationalised with respect to its particular application in PC. As a complex problem, a care situation in PC is characterized by reciprocal, nonlinear relations and uncertainties. Dealing with complex problems necessitates problem-solving methods tailored to specific situations. The theory of complex adaptive systems (CAS) provides a framework for locating problems and solutions. This study aims to describe criteria contributing to complexity of PC situations from the professionals' view and to develop a conceptual framework to improve understanding of the concept of "complexity" and related elements of a PC situation by locating the complex problem "PC situation" in a CAS.
METHODS: Qualitative interview study with 42 semi-structured expert (clinical/economical/political) interviews. Data was analysed using the framework method. The thematic framework was developed inductively. Categories were reviewed, subsumed and connected considering CAS theory.
RESULTS: The CAS of a PC situation consists of three subsystems: patient, social system, and team. Agents in the "system patient" are allocated to further subsystems on patient level: physical, psycho-spiritual, and socio-cultural. The "social system" and the "system team" are composed of social agents, who affect the CAS as carriers of characteristics, roles, and relationships. Environmental factors interact with the care situation from outside the system. Agents within subsystems and subsystems themselves interact on all hierarchical system levels and shape the system behaviour of a PC situation.
CONCLUSIONS: This paper provides a conceptual framework and comprehensive understanding of complexity in PC. The systemic view can help to understand and shape situations and dynamics of individual care situations; on higher hierarchical level, it can support an understanding and framework for the development of care structures and concepts. The framework provides a foundation for the development of a model to differentiate PC situations by complexity of patients and care needs. To enable an operationalisation and classification of complexity, relevant outcome measures mirroring the identified system elements should be identified and implemented in clinical practice.
Family members are often involved in medical decision-making on behalf of a nursing home resident. Prospect theory provides a framework for understanding how people weigh decisions. In the current study, prospect theory concepts are used to build understanding about how family members weigh medical decisions for an NH resident diagnosed with cancer. This is a secondary analysis of qualitative interview data from 24 family members of nursing home residents. Prospect theory concepts of gain, loss, risk, and reference point were used deductively in qualitative content analysis. Themes were developed by comparing content related to these four concepts, across the transcripts from the 24 participants. Three themes comprise the main findings, including "Don't prolong this," "A good ending is a gain," and "Experience can facilitate seeing the big picture." Prospect theory concepts applied to decisions faced by family members were useful in building an understanding of what participants considered as gains, losses, risks, and reference points. Many participants framed the medical decisions within the larger context of the resident's life and concluded that jeopardizing the chance for a peaceful dying process was too high a risk. Medical interventions were selected or avoided because of the impact on a comfortable dying process; considered a gain. Advance care planning discussions and goals of care discussions can benefit by directly addressing what residents/patients, families, and health practitioners consider outcomes worth pursuing and avoiding.
BACKGROUND: Achieving a "good death" is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period.
OBJECTIVES: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a "good death."
RESEARCH DESIGN:: A cross-sectional study.
PARTICIPANTS AND RESEARCH CONTEXT: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions.
ETHICAL CONSIDERATION: Approval from Institutional Review Board was obtained.
FINDINGS: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses (29.2%). The nurses thought the most important issue was relief of uncomfortable symptoms (25.2%). On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question (p < 0.05).
DISCUSSION: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents.
CONCLUSIONS: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse-patient communication with regard to the patients' end-of-life wishes.
The inclusion of caregivers in a holistic care approach represents a basic principle in palliative care. However, many palliative care professionals have a lack of understanding of difficulties or unmet needs among caregivers. To enhance the quality of life of caregivers and the quality of care for patients, healthcare professionals should be better informed about the constructs of caregiver burden. The aim of this study is to synthesize the concept of caregiver burden in palliative care, providing implications for the caregivers and their support systems. This concept analysis study adopts the integrative review approach and the basic text analysis method (ie, word frequency). The PubMed, CINAHL, Embase, and PsycINFO databases are explored for eligible studies. From this literature search, 66 articles from 1998 to 2018 are located. After data collection is completed, the two authors independently evaluate the quality of studies published before 1 September 2018. The caregiver burden is then redefined with its attributes, antecedents, consequences, empirical referents, and facilitators. It is recommended that the multidimensional concept of caregiver burden in palliative care be measured by considering caregiver characteristics and the caregiving context.
OBJECTIVE: This article explores the universal concept of time with the aim of enhancing our ability to help those affected by loss and trauma as well as those who study and treat them. The help comes in the form of a new framework that focuses on how we think about, and represent, time in scholarship and practice.
METHOD: In this conceptual article, I outline traditional approaches to incorporating time in psychological research and discuss the many related concepts, such as anniversary reactions. The main aim of the article is to introduce a reconceptualized framework of time, including the assertion of meaningful time and markers in time. The premise of this framework is that social behavioral sciences should consider time as an uneven, meaningful, and overt force that influences trajectories of adaptation in the context of traumatic loss.
RESULTS: This article describes the ways in which markers in time push our current representations of time forward and, in doing so, alter the narrative around pathological grief by removing the time limitation on grief and mourning. This framework recognizes grief as a cyclical process that unfolds in the context of meaningful, rather than chronological, time.
CONCLUSION: The article concludes by addressing the practical implications of this reconceptualization and the potential to greatly impact scholarship and clinical approaches to addressing the needs of clients coping with traumatic loss.
Les importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
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This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
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Many patients, family and staff use the word â€˜traumaticâ€™ when discussing end-of-life experiences. As with many terms we have considered in this series, â€˜traumaâ€™ and â€˜traumatisedâ€™ mean something more specific in a clinical sense than they do in common usage. What does it mean to be traumatised, and how might we recognise and manage this condition in a palliative care setting?