Philosophy Of Palliative Care Research Articles

Deconstructing spiritual care: Discursive underpinnings within palliative care research.

Religion and spirituality are integral to the philosophy of palliative care, shaping its approach to spiritual care. This article aims to examine the discourses within palliative care research to illuminate prevailing assumptions regarding spiritual care. Eighteenoriginal articles were analyzed to examine how spiritual care is understood within palliative care. The analysis, informed by Foucault, aimed to identify recurring discourses. The finding reveals that, in palliative care research, spirituality is viewed as enigmatic yet inherently human and natural, assuming that every individual has a spiritual dimension. The analysis points to healthcare professionals being expected to hold certain qualities to put spiritual care into practice. The analysis also reveals that in the analyzed articles, the concept of spiritual care is rooted in a Christian context, with the belief that all individuals possess inherent spirituality or religiosity, a concept often associated with Christian theology. The included articles often utilize theological terms and emphasize a monotheistic viewpoint. Spirituality is articulated as a complex, distinct concept, challenging clear definitions and professional responsibilities. Further, a moral formation of healthcare professionals is described, interpelling and ascribing qualities that healthcare professionals need to provide spiritual care.

‘Total pain’: reverence and reconsideration

Dame Cicely Saunders’ conceptualization of ‘total pain’, or ‘total suffering’, is one of her most significant and lasting contributions to the field of palliative care. It was Saunders’ unique combination of knowledge and experiences as a trained social worker, nurse and physician that influenced her understanding of suffering specific to a life-limiting illness as being multi-dimensional: that suffering may be simultaneously physical, psychological, emotional, social, spiritual and/or existential in nature. ‘Total pain’ remains a highly relevant and significant concept within palliative care and Saunders’ lasting contributions are to be revered. This paper invites us to reconsider one particular aspect of Saunders’ conceptualization: that patients’ ‘mental reactions’ to their anticipated dying/death is a key contributor to their ‘total pain’. Drawing upon Saunders’ works from the late 1950s to the early 2000s, this paper details the socio-historical manifestation of this aspect of ‘total pain’ within Saunders’ writings, including influences from her Christian religion and Viktor Frankl, and its enduring impact on palliative care philosophy, practice, and discourse. Then, drawing upon patient stories rooted in my own clinical experiences over a 10 year period as a hospice social worker, I suggest that this particular feature of Saunders’ ‘total pain’ may, unintentionally, work to pathologize both the patient for whom suffering persists and remains unsolvable, and the palliative care clinician who may struggle to relieve it — and why it therefore stands to be revisited. It is my sincere hope and intention that ongoing reverence for Saunders’ significant contributions can sit alongside respectful reconsideration.

A qualitative study of experiences of institutional objection to medical assistance in dying in Canada: ongoing challenges and catalysts for change

BackgroundIn June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these “institutional objections”, however, very little research has examined their nature and impact.MethodsThis study reports on findings from 48 semi-structured qualitative interviews conducted with MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis.ResultsThemes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions’ objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners.ConclusionsThis paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice.

Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

Nurses knowledge of palliative care: systematic review and meta-analysis

Lack of knowledge about palliative care is one of the most common reasons for hindering the delivery of high-quality palliative care. Nurses play a major role in providing palliative care,...

Policy Narratives on Palliative Care in Sweden 1974–2018

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life.

‘How is it possible that at times we can be physicians and at times assistants in suicide?’ Attitudes and experiences of palliative care physicians in respect of the current legal situation of suicide assistance in Switzerland

IntroductionSwitzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is...

Cuidados paliativos em uma metodologia ativa de ensino

Abstract This study evaluates the knowledge about palliative care of medical students in their final years at universities that adopt problem-based learning methodology in Northeast Brazil. It was observed that 78% of the students did not have sufficient information on the care of terminally ill patients, and only 55% knew the World Health Organization’s definition of palliative care. Regarding specific knowledge, students showed an unsatisfactory level of achievement in the domains of dyspnea, psychiatric and gastrointestinal problems; acceptable in the pain domain and excellent in philosophy of palliative care and communication skills. Knowledge regarding pain management, dyspnea and psychiatric problems improved during the internship. Therefore, it was found that students come into contact with the subject but have a significant deficit in issues related to the management of common symptoms in palliative care.

Palliative care - illness, dying, and death as biological-medical and socio-cultural phenomena

Introduction. In modern global times, the answer to the question of how to live well is palliative care. It is a type of care that is dedicated to creating circumstances in which the process of dying, and death itself, becomes a dignified and acceptable moment. The palliative approach is based on empathy, understanding, on preserving the dignity of the patient, on open two-way communication, as well as on caring for the patient?s family. Objective. This article comprises three aims. The first aim refers to introducing our professional milieu to the basic concepts and philosophy of palliative care. The second aim points out the importance of multidisciplinary and comprehensive care (physical, psycho-social, and spiritual) in palliative care in general. The third aim is to critically consider various obstacles and resistance that exists in our environment regarding the organization of palliative care, through the prism of various models of palliative care around the world, particularly in Europe and in the regional countries. To search the literature, we used the following databases: Web of Science, PubMed, SCIndeks, Google Scholar; by the following keywords: palliative care, neonatal palliative care, nursing, palliative pain, national palliative care program. We presented the analyzed data using a descriptive method. Conclusion. If the right to palliative care is seen as a special human right, it can be concluded that our country lags significantly behind developed countries in this regard. Hence, the preoccupation of the author in this paper is the theoretical foundation of palliative care, with special emphasis on the multidisciplinary team. The purpose of this paper is to point out the connection between palliative care and the phenomenon of the quality of life, as something that is extremely important not only to each individual but to the society as a whole.

A shelter from the abyss: exploring Cicely Saunders' vision of hospice care through the concept of worldview.

Over the past two decades, a debate has arisen concerning the history and philosophy of hospice and palliative care. This critical essay extends this debate by linking the analysis of Dame Cicely Saunders' writings with the concept of worldview, exploring the modern hospice movement vis-à-vis Saunders' approach to terminal care. Worldviews as cultural classifications of reality provide groups and individuals with meaning to navigate everyday and liminal situations. Using this concept in connection to the discipline of the sociology of knowledge, it is possible to grasp how the origins and principles of modern hospice care, from which current palliative care practices evolved, relate to the sociocultural environment of the postwar era in the West. The analysis focuses on a selected body of Saunders' writings, mainly written in the 1960s and 1970s, and discusses different components and functions of her revolutionary care paradigm. In this essay, I show that Saunders' vision of hospice care entails much more than a set of health care practices; it is a complex construct of knowledge and ideas that offers distinct procedures to shelter the dying from pain and loss of meaning. Her vision builds on medical advances and incorporates norms and attitudes related to secularised Protestant and New Age culture, which fostered privatised types of religion and individualistic ideologies and theodicies.

The 'good death' in Mainland China - A Scoping Review.

Since the mid 80'ies, the western palliative care philosophy has influenced the development of palliative care in mainland China. However, it has caused several challenges. To explore the understanding of the 'good death' among authorities, professionals, patients, and their relatives in end-of-life care settings in mainland China. Scoping review. The PRISMA-ScR checklist was used. The study is not registered. End-of-life care settings, Mainland China. Authorities, healthcare professionals, adult patients, and general population in mainland China. Literature searches were performed through Medline, CINAHL, PsycInfo, and Web of Sciences from 2001-2021, last search 21.4.2021. Inclusion criteria were: Empirical research studies investigating 'good death' or political documents about 'good death', perspectives from authorities, professionals, patients, and/or relatives, and studies following the Declaration of Helsinki. Exclusion criteria were: Literature reviews, languages other than English and Chinese, editorials, letters, comments, and children's death/dying.The analysis consisted of analysing the data including a descriptive numerical summary analysis and a qualitative thematic analysis. Nineteen articles and two political documents were included. The 19 studies were carried out from 2003-2020, with data collected from 1999 to 2019. The political documents were written in 2012 and 2017, respectively. The thematic analysis resulted in three themes: 'Medicalisation of death', 'Communication about death - a clash between two philosophies', and 'Dying and death were socially dependent'. The medicalisation of death meant the understanding of the 'good death' primarily focused on physical symptoms and treatments. The good death was understood as painless and symptom-free, where all symptoms could be measured and assessed. Dignity and shared decision-making were connected to the understanding of the 'good death'. However, the contents of the 'good death' varied across the different actors. The understanding of the 'good death' in mainland China was a negotiation between Chinese traditional philosophy and contemporary western medicine practice. There was a tension between openness and silence about death, which reflected the importance of death education. The understanding of the 'good death' consisted partly of a timely and practical preparation for the death and afterlife, partly of a matter of social and financial issues. There seemed to be a clash between two different cultures in the understanding of a good death in Mainland China, where western philosophy seemed to rule the political medical actors while traditional Chinese philosophy seemed to rule parts of the population.

P09.07.A Signs and Symptoms in the last days of life of the glioblastoma patients - A Descriptive and Retrospective Study

Abstract Background Despite scientific advances to develop techniques for early diagnosis and treatment of glioblastoma, the disease continues to have a remarkably poor prognosis. Studies have shown that in patients with glioblastoma, not only the presence of end-of-life signs and symptoms but also their frequency differs from those in the rest of cancer patients. The complexity of glioblastoma symptoms makes the integration of a palliative care philosophy essential. Objective To identify the main signs and symptoms that occur in patients with glioblastoma in their last seven days of life in a neuro-oncology ward. Material and Methods This was a descriptive and retrospective study regarding the signs and symptoms in the last seven days of life of patients with glioblastoma who were admitted to the neurology ward of a national oncology reference center. The patients were admitted after neuro-oncologist consultations between 2019 and 2020. The data collection instrument used was based on the document “The Last Hours of Living”. Confidentiality of the participants was guaranteed, and authorization was obtained from the institution’s ethics committee. Results The sample had 17 patients (13 men and 4 women), with an average hospital stay of 17.3 days. The men and women had average ages of 61.8 and 63 years, respectively. Clinical and nursing records revealed that the most prevalent signs and symptoms were “decreased level of consciousness” (94%); “rare and unexpected events” (94%); “respiratory dysfunction” (88%); and “loss of ability to swallow” (76%). In the last seven days of life, the approximate times of presentation for these signs and symptoms were: decreased level of consciousness, 6 days; rare and unexpected events, 2 days; respiratory dysfunction, 3 days; and loss of ability to swallow, 6 days. Support was requested from the in-hospital palliative care support team for 76.4% of patients. Conclusion The identification of reduced level of consciousness and alterations in swallowing as the most prevalent symptoms is consistent with the findings of previous studies. The prevalence of rare and unexpected events (such as fever, myoclonus and seizures) aligns with previous studies that indicated a difference in the signs and symptoms presented by patients with glioblastoma in the last days of life and patients with other oncological diseases. In this sense, the instrument used for data collection may not be the most appropriate for the population with primary central nervous system tumors. The decreased level of consciousness and impaired communication can complicate the assessment of signs and symptoms, such as pain, nausea, anxiety and depression. It is essential to conduct research studies with more representative samples. The recording of the signs and symptoms presented, as well as interventions and the evaluation of their effectiveness, are essential to ensure the quality of end-of-life.

Current status of academic palliative medicine in Poland: a nationwide study

AimTo assess the current status of palliative medicine (PM) education in medical students in Poland.MethodsData on PM teaching were obtained from a 16–item questionnaire sent to the heads of PM and palliative care (PC) departments at universities or university authorities. In cases in which there was no PM or PC department, the questionnaire was sent to authorities of a given University.ResultsEleven PM and PC departments were included in the analysis; 7 at the medical universities, and four at collegium medicum at universities. Among these there were two chairs of PM (at the Medical University of Poznań and the Collegium Medicum at the University of Zielona Góra) and one chair of PC (in Bydgoszcz). Most of the Departments were part of faculties of medicine, and a minority were part of faculties of health sciences. There were no PM or PC departments at 2 medical universities, three at collegium medicum at universities, and 6 at faculties of medicine; two at public universities and 4 at non–public universities. All programs of PM teaching included the philosophy of PC, and pain management. The majority included management of other symptoms, emergencies, communication, ethical issues and psychological issues in PC. Of 12 programs, 9 included practical (bedside) teaching. The numbers of hours allocated to PM ranged from 15 to 45 (median 20).ConclusionsHalf of the universities that educate medical students in Poland had PM departments and provided obligatory PM teaching. Establishing departments of PM and PC at all medical universities, collegium medicum at universities, and faculties of medicine at universities with a common PM program as an integral part of undergraduate education is suggested through including PM as a separate subject to the Regulation of the Ministry of Education and Science and initiatives of National and Provincial Consultants in PM.

A Countrywide Assessment of Omani Undergraduate Nursing Students' Palliative Care Knowledge and Attitudes Towards End-of-Life Care.

Palliative care (PC) is a vital part of the responses needed to address the outcomes of cancer and other non-communicable diseases such as chronic pain, terminal illnesses, and end-of-life situations. Until today, there is a significant lack of access to PC in most developing countries, where the majority of the global population lives. Deficiencies in nurses' knowledge and attitudes exacerbate the lack of access to PC and end-of-life care (EOLC) in these countries. This study was conducted in Oman to assess undergraduate nursing students' (NS) PC knowledge and attitudes towards EOLC. A cross-sectional design was used to collect data from 276 NS in all undergraduate programs in Oman. The PC knowledge and attitude towards EOLC were measured using the PEACE-Q and FATCOD-B. The NS had a borderline level of PC knowledge but favorable attitudes towards EOLC. The NS were least knowledgeable about the philosophy of PC, delirium, side effects of opioids, cancer pain, and dyspnea. There were differences in PC knowledge and attitudes across programs. The findings highlight potential deficiencies and opportunities that can be utilized to augment future nursing human resources for PC and EOLC in Oman. We recommend a national interdisciplinary PC education and training consortium (NIPCET-C) to dialogue, develop, promote, monitor, and evaluate PC and EOLC education in Oman.

Perception of nurses about palliative care: Experience from a private hospital in west Indonesia

Background: Palliative care is a method for patients and their families facing life-threatening conditions to improve their quality of life. Nurses have a critical role on the palliative care team, and as such, they must have an accurate perception of palliative care.Purpose: To identify nurses’ perceptions about palliative care: from a private hospital in west IndonesiaMethod: This research is a descriptive research conducted with a cross sectional design. Participants were recruited using a purposive sampling technique from a private hospital in West Indonesia, with a population of 238 nurses from all wards. All nurses who had worked for at least two years and agreed to participate in the study were included. Slovin's algorithm was used to determine the sample size, which resulted in 149 nurses. However, only 105 nurses answered the questionnaire and completed it.Results: The results indicated that the majority of nurses were female in their early twenties. The study demonstrated that nurses had an exceptional grasp of the definition and philosophy of palliative care, albeit certain concerns remained unanswered.Conclusion: In conclusion, providing palliative care training will improve nurses’ knowledge as well as their practice in palliative care.

Designing Palliative Care Facilities to Better Support Patient and Family Care: A Staff Perspective.

To contribute staff perspectives on the design of palliative care facilities to better align with the philosophy of palliative care, in support of patient, family, and staff well-being. The receipt of palliative care differs from other inpatient experiences owing to its distinct philosophy of care, longer lengths of stay, a greater presence of family members, and more frequent end-of-life events. While research regarding the optimal design of palliative care environments recognizes these differences, this knowledge has been slow to exert change on the guidelines and procurement processes that determine the design solutions possible within these settings. Sustained research attention is required. An online survey, comprising a series of open-ended questions, elicited the perceptions of palliative care staff regarding the relationship between the physical environment and the distinct philosophy of palliative care. Responses from 89 Australian-based palliative care professionals confirmed the high value that staff place on environments that offer privacy, homeliness, safety, and access to gardens to assist the delivery of optimum care. Our findings illustrate that the implications of privacy and homeliness extend far beyond the patient room and that homeliness is about more than an aesthetic of comfort. This highlights a broader capacity for design to better support the philosophy of palliative care. Importantly, the data reveal a key relationship between staff well-being and the environments in which they work; environments that are unable to match the quality of care that staff aspire to deliver can engender frustration and distress.

Palliative and Hospice Social Work Roles in the U.S.

Palliative care services worldwide continue to grow, primarily in response to a human rights approach and to respond to the aging of the population, increasing prevalence of chronic illnesses and cancer mortality. While there is recognition in the WHO definition of palliative care that not only physical, but also psychological, social and spiritual aspects of care must be part of services provided, how these are addressed varies greatly by country and region of the world.In the U.S., social work services are mandated to be provided by hospice organizations seeking funding from Medicare (governmental insurance for people over age 65) and supports the tenets of the palliative care philosophy to provide person-centered holistic care. The role of palliative and hospice social workers is highly aligned with the values of the profession centered on the dignity and worth of all humans and the commitment to improving quality of life throughout life and especially at the end of life. Older adults make up the overwhelming majority of hospice recipients in the U.S. and attention to their daily needs and those of the family caregivers is essential to maximize quality of life.This presentation will focus on the roles of social workers in the U.S., particularly with older adults, in various palliative care settings and how this may compare to roles across the globe.

Patient Navigator and Community Health Worker Attitudes Toward End-of-Life Care.

Background: There are racial/ethnic disparities in hospice use and end-of-life (EOL) care outcomes in the United States. Although the use of community health workers (CHWs) and patient navigators (PNs) has been suggested as a means of reducing them, CHW/PNs' attitudes toward a palliative care philosophy remain unknown. The purpose of this study was to examine how personal attributes affect a CHW/PN's attitude toward EOL care. Methods: CHWs/PNs were recruited from two state-wide organizations and invited to complete an online survey. We collected information on demographics, attitudes toward the palliative care philosophy, and comfort with caring for patients at the EOL. Results: Of the 70 CHWs/PNs who responded to the survey, 82.5% identified as female, 56.4% identified as black, and 56.2% had a four-year college degree or higher. The mean score on a validated scale to assess attitudes toward EOL care was 33.5 (SD = 4.9; possible range, 8-40). Eighty percent strongly agreed or agreed with being open to discussing death with a dying patient. Higher self-efficacy scores were associated with more favorable attitudes toward hospice (r = 0.306, p = 0.016). Conclusions: CHWs/PNs have an overall favorable attitude toward the palliative care philosophy and may be inclined to providing EOL care.

Integrating Palliative Care Into Heart Failure Management.

The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families through the prevention and relief of suffering by assessment and treatment of physical, psychosocial, and spiritual problems. Any patient with chronic debilitating disease, including heart failure, is a candidate for interdisciplinary palliative care to manage their complex physical and psychosocial needs. The philosophy of palliative care has evolved to include a vision of holistic care extended to all individuals with serious illness and their families or caregivers that should be integrated throughout the continuum of care, including the acute phase. The critical care nurse will likely encounter patients with heart failure who are receiving or are eligible to receive palliative care at various time points during their illness. Critical care nurses therefore play a pivotal role in symptom palliation affecting the heart failure patient's quality of life. To review the models of palliative care and the role that the critical care nurse plays in symptom palliation and preparation of the patient and their family for transition to other levels and settings of care. This review addresses the principles and models of palliative care along with how to integrate these principles into all phases of the heart failure disease continuum. Also included are recommendations for palliation of symptoms specific to heart failure patients as well as a discussion of the role of the critical care nurse and the importance of shared decision-making.

\u201cThe system is well intentioned, but complicated and fallible\u201d interviews with caregivers and decision makers about palliative care in Canada

BackgroundCanadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers (e.g., program managers) and to understand how their experiences within the health care system may have influenced their perceptions.MethodsNine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes.ResultsThree themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual’s illness.ConclusionsCaregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands.