Managing End-of-Life Information in Palliative Care

2019 ◽  
pp. 169-187
Author(s):  
Alexandre Cotovio Martins
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Information ◽  
Daily Activity ◽  
Healthcare Professionals ◽  
Social Processes ◽  
Daily Work ◽  
Healthcare Teams ◽  
Professional Management ◽  
Organization Of Care

In this chapter, the author develop a sociological analysis of the role played by professional management of information about patients' end-of-life (EoL) processes in palliative care (PC). Thus the author will thus highlight the processes by which PC professionals manage private health information about patients in the frame of this type of care. Thus the author will show how managing information about prospective EoL trajectories by healthcare professionals is one of the major challenges in their daily work in PC wards. The author verifies that, in these contexts, patients and their families and members of the healthcare teams tend to have different experiential and personal careers in their relation with disease, the organization of care, and EoL trajectories, whose confrontation at the level of interaction produces complex effects in social processes that occur in daily activity contexts of PC.

Coordination of Care and Care Transitions With Primary Care Clinicians, Specialty Palliative Care, and Hospice

2020 ◽  
pp. 211-219
Author(s):  
Areeba Jawed ◽  
Joseph D. Rotella
Keyword(s):  
Primary Care ◽  
Chronic Kidney Disease ◽  
Palliative Care ◽  
Kidney Disease ◽  
Supportive Care ◽  
End Of Life ◽  
Care Coordination ◽  
Care Transitions ◽  
Healthcare Teams ◽  
Primary Care Clinicians

Patients with chronic kidney disease typically have needs that cut across a range of services, including nephrology, other specialties, primary care, and palliative care. This chapter proposes a model of integrated supportive care from diagnosis to end of life that coordinates the efforts and maximizes the benefits of different healthcare teams. Supportive care teams can learn primary kidney supportive care skills to manage symptoms, provide emotional support, and facilitate conversations that focus on what matters most to patients and families. Applying best practices of care coordination, they can facilitate seamless transitions as the patient’s condition evolves.

scholarly journals The contribution of healthcare services to quality at the end of a patient’s life cycle

2020 ◽  
Vol 13 (3) ◽  
pp. 29-42
Author(s):  
Aggeliki Katsarou ◽  
George Intas ◽  
Charalampos Platis ◽  
Evgenia Polidoropoulou ◽  
George Pierrakos
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Environment ◽  
Quantitative Methods ◽  
Healthcare Professionals ◽  
Good Health ◽  
Home Care Services ◽  
Healthcare Services ◽  
Quality Model ◽  
Qualitative And Quantitative Methods

Introduction: Over the last decade it has been highlighted that palliative care is important for all life- threatening diseases. Purpose: The purpose of this study was to explore the perception of end-of-life patients and their carers about existing health care structures and healthcare professionals. Methods: This study adopted a mixed research methodology using both qualitative and quantitative methods. The population of this study was end-of-life patients and their caregivers. For data collection and interviews, a questionnaire was used which was created within the research part of the project “Development of a model of quality model in health education, self-care and rehabilitation of patients with neoplasms”. Results: The study sample consisted of 46 patients. Relatively limited activity, but ambulatory, were the 32.6% of patients. About half of the patients (56.5%) had access to home care services. Patients argued that healthcare professionals can guide them to better control their pain (93.5%) and symptoms (89.1%). Most carers were women (69.6%). Emotional disturbances were recorded in 23.9% and 53.3% rated good health. To improve care, most caregivers reported psychological support, more frequent contact with the family environment, and knowledge of the existence of specific structures/services. Conclusions: It is important to develop healthcare policies, which will include the development of palliative care, especially for family caregivers of end-of-life cancer patients.

scholarly journals Preparing End-of-Life Talks in Palliative Care: Exploratory Remarks on a Social Process

2021 ◽  
pp. 136078042199783
Author(s):  
Alexandre Cotovio Martins ◽  
Michel Binet ◽  
David Monteiro ◽  
Oriana Brás
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Social Process ◽  
Daily Basis ◽  
Social Problem Solving ◽  
Her Family ◽  
Mainland Portugal ◽  
Definition Of ◽  
Guidelines And Recommendations

In this article, we develop an exploratory analysis of some of the interactional strategies developed by palliative care (PC) professionals in order to prepare end-of-life (EoL) talks with patients and their families, namely in the frame of specifically social problem-solving work which they develop on a daily basis. In this sense, our object of analysis is not EoL talks in themselves, but the broader social processes that tend to precede them in PC, that is, all the work both of approaching the patient and his or her family and of coordination within the teams that PC professionals routinely do in order to propitiate EoL talk. In this way, we don’t envisage EoL talks as a conversation between two parties, with a patient on one side and a doctor on the other side, but as a wider social process which relies upon strong and previous professional engagement. The analysis conducted herein was carried out on data collected under the projects ETIC – Managing EoL trajectories in palliative care: a study on the work of healthcare professionals (Ref. PTDC/SOC-SOC/30092/2017) and Building paths towards death: an analysis of everyday work in palliative care (Ref. PTDC/CS-SOC/119621/2010), both financed by the Portuguese Science and Technology Foundation (FCT); in particular the data obtained through 17 months (12 in the first project and 5 in the second one, still in progress) of ethnographic observation carried out at two hospital internment units providing PC in Mainland Portugal and 42 (37 in the first project and 5 in the second one, still in progress) in-depth interviews to professionals in PC – physicians, nurses, and social workers. As main results, we present several theoretical and empirical elements relevant to the analysis of the field of EoL communication in the context of interactions between healthcare professionals, patients and their families. Following earlier studies on the same theme, we show how the work of preparing EoL conversations refers to a broader social process preceding those conversations. We believe that our findings may contribute to elucidating this dimension of the intervention of PC professionals, thus being instrumental for the future definition of systematised guidelines and recommendations in the framework of PC.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

scholarly journals “We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Meesters ◽  
Bettina Grüne ◽  
Claudia Bausewein ◽  
Eva Schildmann
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Side Effect ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Qualitative Interview Study ◽  
The Family ◽  
Framework Approach ◽  
Sedative Drugs

Abstract Background Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of ‘sedative drugs’ and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. Methods Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. Results Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient’s suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term ‘sedation’ with inducing a state of unconsciousness, which should be avoided. Conclusion German healthcare professionals in general palliative care seem to negatively connote the term ‘sedation’. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed.

scholarly journals Biopsychosocial and Spiritual Implications of Patients with COVID-19 Dying in Isolation

2020 ◽  
Author(s):  
Thushara Galbadage ◽  
Brent M. Peterson ◽  
David C. Wang ◽  
Jeffrey S. Wang ◽  
Richard S. Gunasekera
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Critically Ill ◽  
Critically Ill Patients ◽  
Well Being ◽  
Care Staff ◽  
Integrative Approach ◽  
Healthcare Teams ◽  
Use Of Technology ◽  
Spiritual Well Being

Critically ill patients with the Coronavirus disease 2019 (COVID-19) are dying in isolation without the comfort of their family or other social support in unprecedented numbers. Recently, healthcare teams at COVID-19 epicenters have been inundated with critically ill patients. Patients isolated for COVID-19 have had no contact with their family or loved ones and may have likely experienced death without closure. This situation highlights concerns about the psychological and spiritual well-being of patients with COVID-19 and their families, as they permanently part ways. While palliative care has advanced to address these patients' needs adequately, the COVID-19 pandemic presents several barriers that force healthcare teams to deprioritize these essential aspects of patient care. The severe acute respiratory syndrome (SARS) outbreak in 2003 gave us a glimpse of these challenges as these patients were also isolated in hospitals. Here, we discuss the importance of the biopsychosocial spiritual model in end-of-life care and its implications on patients dying with COVID-19. Furthermore, we outline an integrative approach to address the unique and holistic needs of critically ill patients dying with COVID-19. These include intentional and increased coordination with trained palliative care staff, early and frequent goals of care including discussion of end-of-life plans, broader use of technology to improve connectedness and shared decision making with patients’ families.

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell.Aim: To explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

Translation, cultural adaptation, and validation of the Brazilian Portuguese version of the End-of-Life Professional Caregiver Survey

2019 ◽  
Vol 18 (5) ◽  
pp. 569-574
Author(s):  
Ana Cláudia Mesquita Garcia ◽  
Vivian Marina Calixto Damasceno Spineli ◽  
Aline Helena Appoloni Eduardo ◽  
Everson Meireles ◽  
Guilherme Antonio Moreira de Barros ◽  
...  
Keyword(s):  
Palliative Care ◽  
Linear Regression ◽  
Multiple Linear Regression ◽  
End Of Life ◽  
Cultural Adaptation ◽  
Healthcare Professionals ◽  
Linear Regression Analysis ◽  
Equation Modeling ◽  
Professional Caregiver ◽  
Composite Reliability

AbstractObjectivesThe aim of this study was to translate, culturally adapt, and psychometrically evaluate the Brazilian version of the “End-of-Life Professional Caregiver Survey” (BR-EPCS).MethodThis is an observational cross-sectional study. The sample was composed of 285 Brazilian healthcare professionals who work or worked in the palliative care area. A minimum number of 280 participants were established, following the recommendation of 10 subjects for each instrument item. The European Organisation for Research and Treatment of Cancer — Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation. For the precise/reliable evaluation of factors measured by the BR-EPCS, Cronbach's alpha (α) and composite reliability coefficients were used. The factorial analyses were made by means of the exploratory structural equation modeling methods and confirmatory factor analysis. We have conducted a multiple linear regression analysis to evaluate the sociodemographic variables' capabilities in the result prediction measured by BR-EPCS factors.ResultsThe factorial analysis showed the relevance of two factors: Factor 1 — “Given care effectiveness” (18 items; Cronbach's α = 0.94; Composite Reliability = 0.95) and Factor 2 — “Mourning and ethical and cultural values” (10 items; Cronbach's α = 0.89; Composite Reliability = 0.88). Multiple linear regression analyses revealed that the working time, sex, palliative care training, and its own advance directives are predictors of the constructs assessed by the BR-EPCS.Significance of resultsThe BR-EPCS is a reliable, valid, and culturally appropriate tool to identify the educational needs of healthcare professionals who work with palliative care. This instrument can be used for educational and research reasons.

scholarly journals A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne Sæle Barlund ◽  
Beate André ◽  
Kari Sand ◽  
Anne-Tove Brenne
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Rural Areas ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Personal Factors ◽  
At Home

Abstract Background For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers’ feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann’s qualitative method for analysis. Results Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: “Personal factors”, “Healthcare professionals” and “Organization” of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

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