Background: The high incidence of pain associated with end-stage cancers indicates the need for a new approach to understanding how and why patients, caregivers, and clinicians make pain management choices.
Aims: To provide pilot data and preliminary categories for developing a middle-range nursing theory and framework through which to scrutinize and identify problematic processes involved in management of poorly controlled pain for home hospice patients, caregivers, and nurses, the “caring triad.”
Design: A qualitative pilot study using constructivist grounded theory methodology to answer the question, “In the context of hospice, what are the social processes occurring for and between each member of the hospice caring triad and how can these processes be categorized?”
Settings: Home hospice care.
Participants/Subjects: hospice patients experiencing cancer pain, family caregivers, hospice nurses.
Methods: From a sample of triads including hospice patients, caregivers and nurses, data were collected at observational visits, individual interviews, and a focus group over the course of each triad's study involvement. We used recursive coding processes to interpret data.
Results: Three preliminary categories of social processes were identified: Pain Meaning, Working Toward Comfort, and Bridging Pain; and six subcategories: perceiving pain and discomfort, knowing what to do, planning activities, negotiating a pain plan, talking about pain, and being together in pain.
Conclusions: As illustrated in the caring triad cases presented, this study moved the management approach of pain from a dichotomous realm of nurse-patient, to the more naturalistic realm for home hospice of nurse-patient-caregiver. In analyzing social processes within and across triad members, we identified categories of impact to target assessment, intervention, and education to improve pain outcomes.
BACKGROUND: palliative radiotherapy can improve quality of life for patients who are symptomatic of advanced cancers. However, this treatment modality is underused and is often mistimed, which negates its potential benefit.
AIM: the aim of this study was to assess nursing knowledge of palliative radiotherapy in the context of caring for patients with a cancer diagnosis.
METHODS: a quantitative method of research was employed using a questionnaire to assess palliative radiotherapy knowledge among a purposive sample of 162 oncology and palliative care nurses.
FINDINGS: the response rate was 48.14%. More than half of respondents reported their knowledge of radiotherapy as insufficient for their practice and almost all agreed they would benefit from more education.
CONCLUSION: nurses require more training to identify when palliative radiotherapy would be an effective symptom control option; specific areas of focus for developing future radiotherapy educational programmes are highlighted.
Objective: This study aimed to clarify visiting nurses' perspectives on critical practices to ensure they could advocate for patients who prefer to die at home.
Methods: Sixteen nurses, working at home-visit nursing agencies in Japan, participated in this study. Data were generated by interviews with the nurses and participant observations from nursing home-visits for six end-of-life cancer patients and were analyzed using content analysis.
Results: Five themes emerged: (1) nursing assessment, (2) support for comfortable daily life of the patient and their family, (3) advocating for the patient's views about continuing homecare until death, (4) supporting the patient's preparedness for death, and (5) coordination with other health professionals and related facilities for a comfortable environment for the patient. In addition, the nurses sometimes used humorous responses to death-related work to change the patient's melancholy thoughts.
Conclusion: The present study found that the participants advocated for the patient's views about continuing homecare until death while coordinating views between the patient and their family; they further supported the patient's daily life while helping them prepare for death to achieve their wish for death at home. In addition, our study uncovered the visiting nurses' unconscious practical wisdom of using humorous responses to death-related work to alleviate the patients' feelings of hopelessness. To develop practical wisdom for using humor effectively in end-of-life care, nurses need to verbalize unconscious practices, and accumulate empirical knowledge about nursing interventions using humor, including cultural attitudes, through case study analysis.
BACKGROUND: The need for palliative care in the intensive care unit is increasing. Whether gaps and variations in palliative care education and use are associated with moral distress among critical care nurses is unknown.
OBJECTIVES: To examine critical care nurses' perceived knowledge of palliative care, their recent experiences of moral distress, and possible relationships between these variables.
METHODS: In this quantitative, descriptive study, survey questionnaires were distributed to 517 critical care nurses across 7 intensive care units at an academic health center in Virginia. Validated instruments were used to measure participants' perceptions of palliative care in their practice setting and their recent experiences of moral distress.
RESULTS: A total of 167 completed questionnaires were analyzed. Fewer than 40% of respondents reported being highly competent in any palliative care domain. Most respondents had little palliative care education, with 38% reporting none in the past 2 years. Most respondents reported moral distress during the study period, and moral distress levels differed significantly on the basis of perceived use of palliative care (P = .03). Respondents who perceived less frequent use of palliative care tended to experience higher levels of moral distress.
CONCLUSIONS: Many critical care nurses do not feel prepared to provide palliative care. When palliative care access is perceived as inadequate, nurses may be more apt to experience moral distress. Health system leaders should prioritize palliative care training for critical care nurses and their colleagues and empower them to reduce barriers to palliative care.
Background and purpose: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses’ and care aides’ self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.
Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted.
Results: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.
Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.
OBJECTIVE: to understand how nurses deal with the elderly's autonomy at the end of life.
METHOD: qualitative, exploratory study, guided by the Grounded Theory. Ten nurses, eight doctors and 15 nursing technicians were interviewed between November 2016 and May 2017 at a university hospital in Rio de Janeiro/Brazil.
RESULTS: nurses deal with the elderly's autonomy in compliance with the code of ethics and exercise leadership in actions and interactions to defend this right, evaluating, guiding and listening to the preferences of the elderly; interacting with the family; and sharing information with the health team.
FINAL CONSIDERATIONS: the elderly's autonomy must be ensured in care planning, based on patient-centered communication and developed in the interaction among agents involved in care. The discussion on "Living Wills" Health Care Directives and principles of palliative care must be encouraged.
The debate about euthanasia continues worldwide, with nurses’ attitudes becoming increasingly more important. The aim of this study is to investigate gender differences among nurses’ perceptions of attitudes toward euthanasia. A nonprobability quantitative, cross-sectional design was carried out among nurses working at a tertiary care center. Data were collected through self-reported questionnaires at their work place. Significant differences were found between men and women to the items such as “Fear of death shows differences due to religious beliefs” ( 2 = 10.550, p < 0.05), “If patient wants euthanasia, nutrition support should be stopped” ( 2 = 12.209, p < 0.05), “CPR should not be applied in case of sudden respiration and heart stop” ( 2 = 9.591, p < 0.05), and “burden for relatives to take care of a patient who is in terminal period and who will die” ( 2 = 9.069, p < 0.05). The present study depicts that gender plays an important role in euthanasia; hence, the researchers strongly suggest that there is an urgent need to draft uniform guidelines after wide consultation with all the stake holders regarding nurses’ role in taking care of patients who request euthanasia, to face these situations effectively and competently within professional boundaries.
The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) is designed to assess the attitudes of professionals and trainees toward caring for the dying patient and their family members. In this study the main aim is to adapt the FATCOD to a Spanish context (FATCOD-S). In addition, the relations between FATCOD-S, sociodemographic variables, emotional intelligence, and death attitudes have been analyzed. A sample of 669 Spanish nursing students from four Universities responded to a questionnaire. The exploratory factor analysis (EFA) concludes a structure composed of two significant factors. A confirmatory factor analysis (CFA) was carried out. The CFA supported a two-factor model. Students with past experience of death and those who had received training in palliative care scored significantly higher on both factors of the FATCOD-S (p < 0.01). The FATCOD-S is an effective and valid tool for measuring the attitudes of Spanish nursing students toward caring for patients at the end of life.
Cet ouvrage veut aider l’infirmière à mieux faire face aux enjeux éthiques auxquels elle est confrontée dans sa pratique. Prenant en compte les aspects sociaux et systémiques du domaine de la santé, et s’appuyant autant sur des principes éthiques reconnus que sur des études récentes, cette 2e édition permet d’analyser et de comprendre les problèmes éthiques pour, ultimement, poser des actions réfléchies.
[Extrait résumé éditeur]
Les soignants sont formés à agir et à se situer au sein d'une relation par nature asymétrique. L'auteure s'attache à montrer l'importance d'un aspect laissé dans l'ombre : la possibilité de faire vivre cette relation dans une dynamique de réciprocité. Nous avons généralement l'habitude de considérer la relation de soin dans sa structure asymétrique : d'un côté un soignant agissant, responsable, et de l'autre, un patient, passif, vulnérable.
C'est oublier de considérer toute la complexité de ce qui s'échange et se partage entre soignants et soignés. En privilégiant une mise en mot proche de son expérience d'infirmière en soins palliatifs, l'auteure formule les enjeux éthiques de la réciprocité, liés à cette façon de concevoir la relation dans l'activité du soin et de la vivre effectivement.
AIMS AND OBJECTIVES: To explore palliative care nurses work experiences caring for patients at the end of life in private homes.
BACKGROUND: The home continues to be a desired place for care and dying, however professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes.
DESIGN: Interpretative descriptive.
METHODS: Participant generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist.
RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: Adjusting interactions and actions depending on the environment when entering each unique private home; Supporting patients and family members in finding a balance between self-care, independence and safe care; Guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and Using transitions between homes to reflect, recuperate and prepare.
CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalized in different strategies used to promote high quality care.
RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.
OBJECTIVES: To understand the meaning attributed by the nurse to the management of nursing care to the person hospitalized due to clinical complications caused by AIDS; to analyze actions related to palliative care; and to construct a theoretical matrix regarding the management of nursing care.
METHOD: Qualitative, exploratory research, guided by the Grounded Theory. Seven nurses and ten nursing technicians were interviewed between May and September 2015, in a university hospital, located in Rio de Janeiro State, Brazil.
RESULTS: Five categories that covered the profile of the hospitalized person, palliative care, intervening conditions for care management, the need for professional qualification, and other aspects to better organize and manage care, including conflict management arose.
FINAL CONSIDERATIONS: The theoretical matrix values the quality of life, the need to understand the flow of care to avoid readmissions and not adherence to medications, requiring new research in the area, such as implementation.
This study aimed to examine the reliability and validity of a scale to assess the competence of Korean nurses who provide spiritual care for patients with terminal illnesses. The reliability and validity were examined using Cronbach a, item analysis, and exploratory factor analysis. The participants were 248 hospice nurses working at 40 hospices and palliative hospitals in South Korea. The results showed that the reliability was high, as indicated by a Cronbach a of .942. The exploratory factor analysis revealed 6 dimensions (assessment and implementation of spiritual care, professionalization and improvement of the quality of spiritual care, personal support and patient counseling, referral to professionals, attitude toward the patient’s spirituality, and communication) with 27 items. The 6 factors explained 68.20% of the variance in the Korean version of the Spiritual Care Competence Scale. From the results, the Korean version of the Spiritual Care Competence Scale may serve as an appropriate measure for provision of spiritual care for patients with terminal illness. In addition, it may be useful in assessing hospice and palliative nurses’ ability for spiritual care.
In China, the development of palliative care is challenging because of limited available resources and rapidly increasing demands. The nurses' competence is a significant element in providing high-quality palliative care. This cross-sectional study aimed to describe the palliative care competence among oncology nurses and to examine the relationships between it and palliative care knowledge, attitudes, and workplace learning conditions. A total of 220 nurses with more than 6 months of experience and who worked in inpatient wards were invited to participate in this study. Four questionnaires were administered to collect data-the Palliative Care Quiz for Nurses, the Attitudes Toward Palliative Care Scale, the Workplace Learning Conditions scale, and the Palliative Care Nursing Self-competence Scale. The data were analyzed using descriptive statistics and Pearson correlations. The moderate level of competence was reported by 212 participants (response rate, 96.36%). The scores were lower in the aspects of competence such as spiritual care and ethical and legal issues. Competence was positively related to workplace learning conditions and knowledge but not attitudes. The results highlighted the necessity of improving the palliative care competence among oncology nurses. The optimization of learning conditions in the hospital is recommended to be a vital force in strengthening competence.
BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient's quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients' and their relatives' needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life.
AIM: The aim of this study was to explore nurses' experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care.
RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis.
ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study.
FINDINGS: A main theme and four subthemes emerged. The main theme was "Deep co-creative relationships are needed to manage ethical and existential issues at the end of life." A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care.
DISCUSSION: Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses' ethical competence within this context.
CONCLUSION: The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients' perspective.
Job satisfaction among hospice and palliative nurses is important as turnover and a dissatisfied workforce impact the work environment and the care provided to seriously ill patients and their families. This article reports the results of a nationwide survey of 633 hospice and palliative nurses evaluating job satisfaction, intent to leave, job stressors, suggested work improvements, and self-care strategies. Statistically significant correlations were found between the Home Healthcare Job Satisfaction Scale and subscales and the individual’s self-rating of overall job satisfaction, likelihood of leaving the job, and thoughts of quitting. Multiple regression revealed a significant positive association between salary and overall job satisfaction, relationship with the organization, professional pride, autonomy, and control. A grounded theory approach was utilized to analyze qualitative data. Top job stressors identified were workload and problems with administration. Physical activities were cited as the most popular for self-care. Results indicate that most participants were highly satisfied with their work, but almost half think of quitting some or all of the time, indicating dissatisfaction with the work environment. Respondents suggested that employers increase recognition and salary, create a more positive work environment, decrease workload, and focus on patient needs rather than profits.
Introduction : au plan international, le concept de sédation palliative n’est pas défini de façon uniforme. En Suisse, il est encadré par les recommandations émises en 2005.
Contexte : la conceptualisation de la sédation palliative est susceptible d’être hétérogène chez les infirmiers , en raison de la diversité des protocoles développés localement, mais aussi, des expériences vécues, posant ainsi des difficultés épistémologiques et pratiques. Cette problématique, bien qu’indispensable pour bien circonscrire l’objet de futures recherches en la matière en Suisse, n’a pas été explorée dans la partie francophone de ce pays.
Objectifs : découvrir et décrire la conceptualisation de la sédation palliative par les infirmiers d’une unité de soins palliatifs en Suisse romande.
Méthode : recherche qualitative exploratoire avec entretiens compréhensifs individuels.
Résultats : la sédation palliative est considérée comme un traitement de dernier recours face à un/des symptôme(s) réfractaire(s). La recherche d’une dose minimale efficace et le caractère au moins initialement temporaire de la sédation sont les principaux éléments mis en avant par les infirmiers.
Discussion et conclusion : la conceptualisation de la sédation palliative est conforme aux recommandations suisses. Ces résultats constituent une base afin de développer une étude nationale en la matière.
INTRODUCTION: The number of people dying in emergency departments (EDs) is increasing. However, EDs are not well designed or resourced for safe and effective End-Of-Life (EOL) care encounters, and there is little evidence regarding clinicians' perceptions and experiences of providing such care when the death is sudden and unexpected.
AIM: This study explored nurses' perceptions and experiences of caring for patients who die suddenly and unexpectedly in the ED.
METHODS: Open-end responses were collected as part of a larger descriptive survey design. The qualitative data were analysed thematically.
RESULTS: 211 ED nurse completed the online survey. Within the qualitative data, five themes were identified during analysis: 1) key elements of EOL care, 2) systemic and environmental barriers, 3) educational deficits, 4) role ambiguity, and 5) emotional impact. Participants identified communication, a standardised approach, and better educational preparedness as the most important elements of EOL care when the death was sudden and unexpected.
CONCLUSIONS: ED nurses want to provide high quality care to dying patients and their families. However, their efforts are hampered by systemic and environmental barriers outside their control. There is a need for a culture shift to overcome the barriers that currently obstruct ED nurses from providing meaningful and effective EOL care in the ED.
AIM: this literature review aimed to explore qualitative studies in which nurses discussed the challenges they face when delivering end-of-life care in intensive care units (ICUs). Analysis and discussion of the studies' findings aimed to contribute to the current evidence base surrounding the subject.
METHOD: a systematic search of academic databases was conducted to source relevant studies. An inductive process using grounded theory was undertaken to elicit suitable themes to address the review question.
FINDINGS: six relevant studies were identified with four main themes emerging from analysis. The themes were a lack of nurse involvement in end-of-life care decision-making, a lack of nursing knowledge in providing end-of-life care, the dilemma of prioritising care between the patient and family, and the nature of providing end-of-life care within an ICU environment.
CONCLUSION: the provision of end-of-life care in ICUs requires nurses to be involved in interdisciplinary communication. ICU-specific end-of-life care education, training and guidelines need to be implemented to ensure patients receive high-quality, patient-centred care.
AIM: This study explored the attitudes, experiences, and perceptions of Korean nurses toward advance directives (ADs) before the establishment of new Well-Dying Law.
METHODS: A sequential explanatory mixed method design was applied. We administered a constructed questionnaire on attitudes toward ADs and end-of-life issues and experience related to end-of-life decision-making. A Korean-translated version of the KAESAD [Knowledge-Attitudinal, Experimental Survey on ADs] was administered by 245 nurses. Semi-structured interviews (N = 16) were audio-recorded, transcribed, and coded in a qualitative content analysis.
RESULTS: The quantitative results revealed the nurses' perspectives on ADs: that valuing patient's autonomy, authority, or rights is vital to the implementation of ADs and end-of-life decision-making. Also, nurses reported that patients should be knowledgeable and informed about ADs. These responses allowed us to generate an interview, which revealed four themes in adopting the Well-Dying Law, including ADs. Themes with 'benefits' and 'roles of health care providers' mainly supported the quantitative results. Themes with 'ethical issues,' such as disagreement between patients and family members on ADs, and 'preparation,' regarding adopting the new law, should be importantly considered when implementing ADs in clinical settings.
CONCLUSIONS: Our study highlights that nurses need to develop sufficient knowledge on the laws, and communication skills to help patients be knowledgeable and make their own decisions regarding ADs. To successfully adopt the Well-Dying Law, our findings suggest that a nationwide public campaign and a continuing education program for nurses to manage ethical issues regarding ADs are required.