Introduction: the concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient.
Case Description: souffrA 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores.
Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.
Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored.
Objective: To explore how PC researchers/academics perceive the term is the objective of this study.
Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis.
Participants: Academics and researchers in PC were the participants in this study.
Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve.
Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.
Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity-and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide-and this is where an argument based on dignity as an attitude can provide illumination.
BACKGROUND: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care.
METHODS: Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding.
RESULTS: Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children's everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive "word of mouth".
CONCLUSIONS: The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.
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.
The term nonhospice palliative care was developed to describe and differentiate palliative care that is delivered prior to the end of life. The purpose of this article is to better define and clarify this concept using Rodgers's evolutionary concept analysis method. Attributes of nonhospice palliative care include (a) patient- and family-centered care, (b) holistic care, (c) interdisciplinary team, (d) early intervention, (e) quality of life-enhancing, (f) advanced care planning, (g) any age of the patient, (h) at any stage in illness, (i) care coordination, (j) concurrent curative treatment options, and (k) provided by primary and specialist providers. Nonhospice palliative care antecedents are serious illness, education, and access to services; consequences include benefits for the patient, family, provider, and health care system. Offering a clearly defined concept may allow for changes in health care to improve access to these services.
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.
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.
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).
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.