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 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.

scholarly journals Public perception of palliative care: a survey of the general population

2021 ◽  
Vol 15 ◽  
pp. 263235242110175
Author(s):  
Monica C. Fliedner ◽  
Sofia C. Zambrano ◽  
Steffen Eychmueller
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Public Perception ◽  
Healthcare Professionals ◽  
Inductive Reasoning ◽  
Good Health ◽  
The Public ◽  
Relief Of Suffering ◽  
German Speaking

Background: The public’s view of palliative care often involves its potential to improve of quality-of-life as well as its use as a last resource prior to death. Objective: To obtain an idea of the image of palliative care held by the public in the German-speaking part of Switzerland, the authors sought to understand (1) the perceptions of palliative care and the (2) elements important when thinking about their own end of life. Methods and Sample: A qualitative design with an inductive reasoning approach based on Mayring (2014) was chosen. Visitors at an exhibition about palliative care in six locations provided hand-written answers on provided cards to two statements: (1) if I hear the term ‘Palliative Care’ I think of … and (2) when thinking about my own end of life, the following is important to me … Results: Answers of 199 visitors (mean age 52, mostly in a good/very good health status) were analysed. In response to hearing the term palliative care, six areas were categorized: (1) the main focus; (2) ways of providing palliative care; (3) the best timing; (4) places where palliative care is provided; (5) who is seen as provider and (6) outcomes of palliative care. Five categories to the statement about their own end-of-life were identified: (1) the ability to look back on a fulfilled life and being satisfied; (2) maintaining trusting relationships until the end; (3) organizing affairs and having everything settled; (4) having their family being cared for and (5) relief of suffering with the support of knowledgeable people. Conclusion: Palliative care was mostly associated with positive terms acknowledging an interprofessional approach. Maintaining one’s dignity as well as dying without suffering pointed at the persisting stigma that palliative care is mainly limited to end-of-life care. The results may help healthcare professionals to better understand how the public view palliative care.

scholarly journals Dignity of older home-dwelling women nearing end-of-life: Informal caregivers’ perception

2020 ◽  
pp. 096973302095637
Author(s):  
Katrine Staats ◽  
Ellen Karine Grov ◽  
Bettina S. Husebø ◽  
Oscar Tranvåg
Keyword(s):  
End Of Life ◽  
Healthcare Professionals ◽  
Informal Caregivers ◽  
Healthcare Services ◽  
Self Concept ◽  
Human Beings ◽  
Educational Training ◽  
Science Data ◽  
Incurable Cancer ◽  
Individual Level

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients.

scholarly journals The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic

2020 ◽  
Vol 34 (9) ◽  
pp. 1182-1192 ◽  
Author(s):  
Sarah Mitchell ◽  
Victoria Maynard ◽  
Victoria Lyons ◽  
Nicholas Jones ◽  
Clare Gardiner
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Service Delivery ◽  
End Of Life ◽  
Primary Healthcare ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Rapid Review ◽  
Life Care ◽  
Care Providers

Background: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. Aim: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. Design: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. Data sources: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. Results: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to ‘systems’ (community providers feeling disadvantaged in terms of receiving timely information and protocols), ‘space’ (recognised need for more care in the community), ‘staff’ (training needs and resilience) and ‘stuff’ (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). Conclusions: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.

Patients' participation in end-of-life care: Relations to different variables as documented in the patients' records

2010 ◽  
Vol 8 (3) ◽  
pp. 247-253 ◽  
Author(s):  
Irma Lindström ◽  
Fannie Gaston-Johansson ◽  
Ella Danielson
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
Cognitive Dysfunction ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Life Care ◽  
High Quality ◽  
Care And Treatment

AbstractObjective:Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables‘ relation to patients’ participation during the last three months in life as documented in patients' records.Method:The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life.Results:This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients.Significance of results:The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

Methods for overcoming barriers in palliative care for ethnic/racial minorities: a systematic review

2019 ◽  
Vol 17 (6) ◽  
pp. 697-706 ◽  
Author(s):  
Donna P. Mayeda ◽  
Katherine T. Ward
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Healthcare Services ◽  
Access To Healthcare ◽  
Racial Minorities ◽  
Treatment Preferences ◽  
Original Research ◽  
Advanced Directives ◽  
Target Populations

AbstractObjectivesEthnic/racial minority groups are less likely to discuss issues involving end-of-life treatment preferences and utilize palliative care or hospice services. Some barriers may be differences in language, religion, lower levels of health literacy, or less access to healthcare services and information. The purpose of this article is to conduct a systematic review on interventional studies that investigated methods to overcome the barriers faced by ethnic/racial minorities when accessing end-of-life services, including completing advanced directives, accepting palliative care, and enrolling in hospice.MethodsLiterature searches using four standard scientific search engines were conducted to retrieve articles detailing original research in an interventional trial design. All studies were conducted in an outpatient setting, including primary care visits, home visits, and dialysis centers. Target populations were those identified from ethnic or racial minorities.ResultsNine articles were selected to be included in the final review. All were full-text English language articles, with target populations including African Americans, Hispanic or Latinos, and Asian or Pacific Islanders. Measured outcomes involved level of comfort in discussing and knowledge of palliative care services, desire for aggressive care at the end-of-life, completion of advance directives, and rate of enrollment in hospice.Significance of ResultsThree main avenues of interventions included methods to enhance patient education, increase access to healthcare, or improve communication to establish better rapport with target population. Studies indicate that traditional delivery of healthcare services may be insufficient to recruit patients from ethnic/racial minorities, and outcomes can be improved by implementing tailored interventions to overcome barriers.

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.

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