scholarly journals Being Heard: A Qualitative Study of Lithuanian Health Care Professionals’ Perceptions of Dignity at the End-of-Life

Medicina ◽  
2021 ◽  
Vol 57 (12) ◽  
pp. 1318
Author(s):  
Rūta Butkevičienė ◽  
Jolanta Kuznecovienė ◽  
David Harrison ◽  
Eimantas Peičius ◽  
Gvidas Urbonas ◽  
...  

Background: The literature on professionals’ perceptions of dignity at the end-of-life (EOL) shows that there is a need for studies set in different cultural contexts. Lithuania represents one of these little-studied contexts. The aim of this study is to understand professionals’ attitudes, experiences, and suggestions concerning EOL dignity to provide knowledge upon which efforts to improve EOL care can be grounded. The research questions are “How do Lithuanian health care professionals understand the essence of dignity at the end-of-life of terminally ill patients?” and “How do they believe that dignity at the EOL can be enhanced?”. Materials and Methods: The study was exploratory and descriptive. It employed an interpretive phenomenological method to understand the essence of the phenomenon. Lightly structured interviews were conducted with professionals who had EOL experience, primarily with elderly and late middle-aged patients. from medicine, nursing, social work, and spiritual services. The interviews were primarily conducted by audiovisual means due to pandemic restrictions. Using a constant comparative method, the research team systematically codified text and developed themes by consensus after numerous analytic data iterations. Results: Four primary themes about EOL dignity were identified: Physical Comfort, Place of Care and Death, Effects of Death as a Taboo Topic, and Social Relations and Communication. A fifth, overarching theme, Being Heard, included elements of the primary themes and was identified as a key component or essence of dignity at the EOL. Conclusions: Patient dignity is both a human right and a constitutional right in Lithuania, but in many settings, it remains an aspiration rather than a reality. Being Heard is embedded in internationally recognized patient-centered models of EOL care. Hearing and acknowledging individuals who are dying is a specific skill, especially with elderly patients. Building the question “Is this patient being heard?” into practice protocols and conventions would be a step toward enhancing dignity at the EOL.

2020 ◽  
Vol 25 (4) ◽  
pp. 213-219 ◽  
Author(s):  
Sabi Redwood ◽  
Bethany Simmonds ◽  
Fiona Fox ◽  
Alison Shaw ◽  
Kyra Neubauer ◽  
...  

Objectives Older people living with frailty (OPLWF) are often unable to leave hospital even if they no longer need acute care. The aim of this study was to elicit the views of health care professionals in England on the barriers to effective discharge of OPLWF. Methods We conducted semi-structured interviews with hospital-based doctors and nurses with responsibility for discharging OPLWF from one large urban acute care hospital in England. The data were analysed using the constant comparative method. Results We conducted interviews with 17 doctors (12 senior doctors or consultants and 5 doctors in training) and six senior nurses. Some of our findings reflect well-known barriers to hospital discharge including service fragmentation, requiring skilled coordination that was often not available due to high volumes of work, and poor communication between staff from different organizations. Participants’ accounts also referred to less frequently documented factors that affect decision making and the organization of patient discharges. These raised uncomfortable emotions and tensions that were often ignored or avoided. One participant referred to ‘conversations not had’, or failures in communication, because difficult topics about resuscitation, escalation of treatment and end-of-life care for OPLWF were not addressed. Conclusions The consequences of not initiating important conversations about decisions relating to the end of life are potentially far reaching not only regarding reduced efficiency due to delayed discharges but also for patients’ quality of life and care. As the population of older people is rising, this becomes a key priority for all practitioners in health and social care. Evidence to support practitioners, OPLWF and their families is needed to ensure that these vital conversations take place so that care at the end of life is humane and compassionate.


2020 ◽  
Vol 30 (9) ◽  
pp. 1314-1325
Author(s):  
Kathie Kobler ◽  
Cynthia Bell ◽  
Karen Kavanaugh ◽  
Agatha M. Gallo ◽  
Colleen Corte ◽  
...  

Health care professionals’ (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs’ initial awareness of a child’s impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a “delicate dance of figuring out” key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.


2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 16034-16034
Author(s):  
P. McIntyre ◽  
E. Grunfeld ◽  
E. Mykhalovskiy ◽  
L. Cicchelli ◽  
S. F. Dent ◽  
...  

16034 Background: Quality indicators (QIs) are tools designed to measure quality of care and help enhance quality through identifying areas needing improvement. Breast cancer offers a disease model to examine QIs for end-of-life (EOL) care. The objective of this study was to assess agreement among stakeholder groups in two Canadian provinces on QIs for EOL breast cancer. Methods: A qualitative study design using a modified Delphi method and focus groups at each study site. After a literature review, an expert panel identified 19 QIs that were potentially measurable using administrative data. The Delphi panels and focus group sessions incorporated the 19 QIs as discussion topics in Halifax, NS and Ottawa, Ont. The Delphi panels involved a multidisciplinary group of oncology health care professionals. Separate focus groups were conducted with women with metastatic breast cancer and bereaved caregivers. All group sessions were audio-taped, transcribed verbatim, audited and a thematic analysis was conducted. Results: A total of 23 health care professionals, 16 patients, 7 bereaved caregivers participated in the study. Participants attended only one group discussion, depending on group assigned. There was good agreement on QIs among patient and caregiver groups in both cities. The need for effective communication was identified as a major theme. The Delphi process yielded overall moderate agreement with QIs among health care professionals. Conclusion: Aspects of quality EOL care important to stakeholders may not be measurable from administrative data. Results from the Delphi panels indicate that patient preferences and differences in health care delivery between different jurisdictions modulated extent of agreement with QIs. No significant financial relationships to disclose.


2018 ◽  
Vol 28 (Supp 1) ◽  
pp. 235 ◽  
Author(s):  
Brooke A. Cunningham ◽  
Andres S. M. Scarlato

<p class="Pa7"><strong>Objective: </strong>Race consciousness serves as the foundation for Critical Race Theory (CRT) methodology. Colorblindness minimizes racism as a determinant of outcomes. To achieve the emancipatory intent of CRT and to reduce health care disparities, we must understand: 1) how colorblindness “shows up” when health care professionals aim to promote equity; 2) how their colorblindness informs (and is informed by) clinical prac­tice; and 3) ways to overcome colorblind­ness through strategies grounded in CRT.</p><p class="Pa7"><strong>Design/Setting/Participants: </strong>We conducted 21 semi-structured interviews with key informants and seven focus groups with personnel employed by a large Minnesota health care system. We coded transcripts in­ductively and deductively for themes using the constant comparative method. We used a race-conscious approach to examine how respondents’ accounts align or diverge from colorblindness.</p><p class="Pa7"><strong>Results: </strong>Evading race, respondents consid­ered socioeconomic status, cultural differ­ences, and patients’ choices to be the main contributors to health disparities. Few criti­cized the behavior of coworkers or that of the organization or acknowledged structural racism. Respondents strongly believed that all patients were treated equally by provid­ers and staff, in part due to race-neutral care processes and guidelines. Respondents also used several semantic moves common to colorblindness to refute suggestions of racial inequality.</p><p><strong>Conclusions: </strong>Colorblindness upholds the racial status quo and inhibits efforts to promote health equity. Drawing on CRT to guide them, health care leaders will need to develop strategies to counter personnel’s tendency to focus on axes of inequality other than race, to decontextualize patients’ health behaviors and choices, and to depend heav­ily on race-neutral care processes to produce equitable outcomes.</p><p><em>Ethn Dis. </em>2018;28(Sup­pl 1):235-240; doi:10.18865/ed.28.S1.235</p>


2018 ◽  
Vol 35 (11) ◽  
pp. 1409-1416 ◽  
Author(s):  
Marcos Montagnini ◽  
Heather M. Smith ◽  
Deborah M. Price ◽  
Bidisha Ghosh ◽  
Linda Strodtman

Background: In the United States, most deaths occur in hospitals, with approximately 25% of hospitalized patients having palliative care needs. Therefore, the provision of good end-of-life (EOL) care to these patients is a priority. However, research assessing staff preparedness for the provision of EOL care to hospitalized patients is lacking. Objective: To assess health-care professionals’ self-perceived competencies regarding the provision of EOL care in hospitalized patients. Methods: Descriptive study of self-perceived EOL care competencies among health-care professionals. The study instrument (End-of-Life Questionnaire) contains 28 questions assessing knowledge, attitudes, and behaviors related to the provision of EOL care. Health-care professionals (nursing, medicine, social work, psychology, physical, occupational and respiratory therapist, and spiritual care) at a large academic medical center participated in the study. Means were calculated for each item, and comparisons of mean scores were conducted via t tests. Analysis of variance was used to identify differences among groups. Results: A total of 1197 questionnaires was completed. The greatest self-perceived competency was in providing emotional support for patients/families, and the least self-perceived competency was in providing continuity of care. When compared to nurses, physicians had higher scores on EOL care attitudes, behaviors, and communication. Physicians and nurses had higher scores on most subscales than other health-care providers. Conclusions: Differences in self-perceived EOL care competencies were identified among disciplines, particularly between physicians and nurses. The results provide evidence for assessing health-care providers to identify their specific training needs before implementing educational programs on EOL care.


1999 ◽  
Vol 35 (3) ◽  
pp. 312-330 ◽  
Author(s):  
Roger S. Magnusson ◽  
Peter H. Ballis

This paper reports on research into the practice of euthanasia amongst Australian health care professionals specialising in HIV/AIDS. It draws on data from thirty-nine semi-structured interviews carried out in Sydney, Melbourne, Brisbane and Canberra with physicians, general practitioners, hospital and community nurses, therapists and community workers. Using a qualitative methodology, the study seeks to identify how (illegal) euthanasia is currently practised, the degrees of involvement, the various forms that involvement takes, and the social relations which provide the context for involvement. In this paper we outline three categories of 'doers' to illustrate the range of attitudes and practices concerning euthanasia. This 'typology' carries a number of implications for recent policy debates over the legalisation of euthanasia. In particular it illustrates, at least within the context of AIDS care, the fragmentation of consensus over euthanasia amongst health care workers, the reality of current illegal euthanasia practices, and the limitations of a prohibitionist policy. While the legalisation of euthanasia within a regulatory framework is sometimes portrayed as an extreme or 'radical' response to terminal illness, the data presented in this paper suggest that prohibitionism is also radical in its failure to control euthanasia practice.


2020 ◽  
Vol 13 (3) ◽  
pp. 259-273 ◽  
Author(s):  
Afsaneh Takbiri ◽  
AmirHossein Takian ◽  
Abbas Rahimi Foroushani ◽  
Ebrahim Jaafaripooyan

Purpose This study aims to explore the challenges of providing primary health care (PHC) to Afghan immigrants in Tehran as an important global human right issue. Design/methodology/approach In this exploratory study, a total of 25 purposively selected PHC providers, including physicians, psychologists and midwives, were approached for face-to-face, semi-structured interviews, lasting 30 min on average. Thematic analysis was used to analyze the data. Findings The most common challenges of providing PHC to Afghan immigrants were categorized at individual, organizational and societal levels. Communication barriers and socioeconomic features emerged at the individual level. The organizational challenges included mainly the lack of insurance coverage for all immigrants and the lack of a screening system upon the immigrants’ arrival from the borders. At the societal level, the negative attitudes toward Afghan immigrants were causing a problematic challenge. Research limitations/implications The main limitation was the possibility that only health-care professionals with particular positive or negative perspectives about immigrants enter into the study, because of the voluntary nature of participation. Practical implications Findings can help policymakers adopt evidence-informed strategies for facilitating PHC provision and improving the access to health care in immigrants as a global human right concern. Social implications This study alerts about undesirable consequences of certain attitudes and behaviors of the society toward immigrant health. Originality/value To the best of the authors’ knowledge, this is one of the first studies conducted in PHC centers in Tehran Province that explores the challenges of providing PHC to Afghan immigrants.


2017 ◽  
Vol 23 (2) ◽  
pp. 121-123
Author(s):  
Shirley A. Lucier

The failure of health care professionals and providers to recognize and discuss end-of-life care continues to resonate across our heath care continuum. The value of the patient–clinician interaction is paramount in advocating for and establishing effective communication and care.A meaningful nurse–patient relationship is a key component to facilitate discussion of patient and family choices in how care can be managed throughout the dying process. This article describes how, using Virginia Henderson’s nursing model of patient-centered care, a holistic and palliative approach to end-of-life care was successfully supported in the home.


2017 ◽  
Vol 10 ◽  
pp. 117822421772477 ◽  
Author(s):  
Eva Bergsträsser ◽  
Eva Cignacco ◽  
Patricia Luck

Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs’ experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children’s hospitals.


2021 ◽  
pp. 104973232199204
Author(s):  
Hester Hockin-Boyers ◽  
Megan Warin

The appropriate form, regularity, and intensity of exercise for individuals recovering from eating disorders is not agreed upon among health care professionals or researchers. When exercise is permitted, it is that which is mindful, embodied, and non-competitive that is considered normative. Using Canguilhem’s concepts of “the normal and the pathological” as a theoretical frame, we examine the gendered assumptions that shape medical understandings of “healthy” and “dysfunctional” exercise in the context of recovery. The data set for this article comes from longitudinal semi-structured interviews with 19 women in the United Kingdom who engaged in weightlifting during their eating disorder recovery. We argue that women in recovery navigate multiple and conflicting value systems regarding exercise. Faced with aspects of exercise that are pathologized within the eating disorder literature (such as structure/routine, body transformations, and affect regulation), women re-inscribe positive value to these experiences, thus establishing exercise practices that serve them.


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