Relational ethics of delirium care: Findings from a hospice ethnography.

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end-of-life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end-of-life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients' comfort and dignity were deemed most at stake and therefore commanded nurses' primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end-of-life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients' subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end-of-life care.

When Someone Dies in the Emergency Department: Perspectives of Emergency Nurses.

UNLABELLED: Emergency nurses work in a clinical area where treatment measures usually are provided quickly, and they have little time to establish relationships. In addition to performing life-saving interventions, emergency nurses provide care for patients who are dying. Little is known about the experiences of emergency nurses who care for patients who die in the emergency department in the Canadian context. METHODS: This study used a qualitative design with an interpretive descriptive approach. Semistructured interviews were conducted with 11 ED nurses from a large Canadian academic health sciences system. RESULTS: In-depth analysis of the data resulted in 3 major themes: "It's not a nice place to die," "I see the grief," and "Needing to know you've done your best." Findings revealed that emergency nurses believed the environment made it difficult to care for dying patients and their families because of unpredictability, busyness, noise, lack of privacy, and the need to manage many patients simultaneously. These nurses were also put in the position of caring for the suddenly bereaved family members, which was viewed as an especially challenging aspect of their role. DISCUSSION: Caring for adults who die in the emergency department is a difficult and challenging aspect of the emergency nursing role. Emergency nurses believed they did their best to provide end-of-life care interventions, which brought a sense of professional satisfaction. Recommended future interventions include advocating for ED design and physical layout to support compassionate end-of-life care, provision of policies and training to support families and family presence, and support of nursing staff.

Delirium as letting go: An ethnographic analysis of hospice care and family moral experience.

BACKGROUND: Delirium is extremely common in dying patients and appears to be a major threat to the family's moral experience of a good death in end-of-life care. AIM: To illustrate one of the ways in which hospice caregivers conceptualize end-of-life delirium and the significance of this conceptualization for the relationships that they form with patients' families in the hospice setting. DESIGN: Ethnography. SETTING/PARTICIPANTS: Ethnographic fieldwork was conducted at a nine-bed, freestanding residential hospice, located in a suburban community of Eastern Canada. Data collection methods included 15 months of participant observation, 28 semi-structured audio-recorded interviews with hospice caregivers, and document analysis. RESULTS: Hospice caregivers draw on a culturally established framework of normal dying to help families come to terms with clinical end-of-life phenomena, including delirium. By offering explanations about delirium as a natural feature of the dying process, hospice caregivers strive to protect for families the integrity of the good death ideal. CONCLUSION: Within hospice culture, there is usefulness to deemphasizing delirium as a pathological neuropsychiatric complication, in favor of acknowledging delirious changes as signs of normal dying. This has implications for how we understand the role of nurses and other caregivers with respect to delirium assessment and care, which to date has focused largely on practices of screening and management.

Resident experiences of informal education: how often, from whom, about what and how.

CONTEXT: The merits of informal learning have been widely reported and embraced by medical educators. However, research has yet to describe in detail the extent to which informal intraprofessional or informal interprofessional education is part of graduate medical education (GME), and the nature of those informal education experiences. This study seeks to describe: (i) who delivers informal education to residents; (ii) how often they do so; (iii) the content they share; and (iv) the teaching techniques they use. METHODS: This study describes instances of informal learning in GME captured through non-participant observations in two contexts: a palliative care hospice and a paediatric hospital. Analysis of 60 hours of observation data involved a process of collaborative team consensus to: (i) identify instances of informal intraprofessional and informal interprofessional education, and (ii) categorise these instances by CanMEDS Role and teaching technique. RESULTS: Findings indicate that 84.8% of GME-level informal education that takes place in these two settings is physician-led and 15.2% is nurse-led. Organised by CanMEDS Role, findings reveal that, although all Roles are addressed by both physicians and nurses, those most commonly addressed are Medical Expert (physicians: 35.7%; nurses: 27.5%) and Communicator (physicians: 22.3%; nurses: 25.0%). Organised by teaching technique, findings reveal that physicians and nurses favour similar techniques. CONCLUSIONS: Although it is not surprising that informal interprofessional education plays a lesser role than informal intraprofessional education in GME, these findings suggest that the role of informal interprofessional education is worthy of support. Echoing the calls of others, we posit that medical education should recognise and capitalise on the contributions of informal learning, whether it occurs intra- or interprofessionally.

Learning collaborative teamwork: an argument for incorporating the humanities.

A holistic, collaborative interprofessional team approach, which includes patients and families as significant decision-making members, has been proposed to address the increasing burden being placed on the health-care system. This project hypothesized that learning activities related to the humanities during clinical placements could enhance interprofessional teamwork. Through an interprofessional team of faculty, clinical staff, students, and patient representatives, we developed and piloted the self-learning module, "interprofessional education for collaborative person-centred practice through the humanities". The module was designed to provide learners from different professions and educational levels with a clinical placement/residency experience that would enable them, through a lens of the humanities, to better understand interprofessional collaborative person-centred care without structured interprofessional placement activities. Learners reported the self-paced and self-directed module to be a satisfactory learning experience in all four areas of care at our institution, and certain attitudes and knowledge were significantly and positively affected. The module's evaluation resulted in a revised edition providing improved structure and instruction for students with no experience in self-directed learning. The module was recently adapted into an interactive bilingual (French and English) online e-learning module to facilitate its integration into the pre-licensure curriculum at colleges and universities.

Toward better care of delirious patients at the end of life: a pilot study of an interprofessional educational intervention.

Symptom distress with end-of-life delirium (EOLD) is complex and multidimensional, and interprofessional (IP) teams require knowledge and skill to effectively care for these patients and their families. The purpose of this pilot study was to test an educational intervention about EOLD for IP teams at a long-term care facility and a hospice. The intervention included a comprehensive self-learning module (SLM) on EOLD and IP teamwork; a modified McMaster-Ottawa team objective structured clinical encounter (TOSCE) and a didactic "theory burst" on the principles of delirium assessment, diagnosis and management. Evaluation tools completed by participants included the interprofessional collaborative competencies attainment survey (ICCAS) and the W(e) Learn. Two groups at each site participated in 1-hour sessions, repeated 2 weeks later. Only one group from each site received the SLM after the first session. Researchers scored EOLD knowledge and IP team functioning in both sessions. Results suggest that the intervention improved EOLD knowledge and perceptions of IP competence and supports the value of the TOSCE as an IP teaching method. The module does not appear responsible for the changes. Future studies are required to evaluate the effectiveness of the individual components used in this study, and to tailor the intervention to individual care contexts.

Relational and embodied knowing: nursing ethics within the interprofessional team.

In this article we attempt to situate nursing within the interprofessional care team with respect to processes of ethical practice and ethical decision making. After briefly reviewing the concept of interprofessionalism, the idea of a nursing ethic as 'unique' within the context of an interprofessional team will be explored. We suggest that nursing's distinct perspective on the moral matters of health care stem not from any privileged vantage point but rather from knowledge developed through the daily activities of nursing practice. Because of their position vis-à-vis patients and families in everyday clinical care, nurses cultivate ethical knowledge of at least two forms: (1) relational knowledge; and (2) embodied knowledge. Through the integration of these forms of knowledge, nurses develop a unique moral perspective and can make a meaningful contribution to the realm of ethics in interprofessional care.

Caring for patients and families at end of life: the experiences of nurses during withdrawal of life-sustaining treatment.

BACKGROUND: Withdrawal of life-sustaining treatment is a process in which active treatment and the accompanying technology are removed, ending in the death of the patient. PURPOSE: To understand the lived experience of critical care nurses who care for patients during the process of withdrawal of life-sustaining treatment. METHODS: A phenomenological study was undertaken and interviews were conducted with six critical care nurses. RESULTS: The essence of this experience was described by these nurses as "trying to do the right thing". Three major themes emerged: A journey--creating comfort along the way, working in professional angst, and providing memories.

Developing meaningful learning experiences in palliative care nursing education.

To help nurses develop effective clinical decision-making skills, it is essential that palliative care education includes opportunities for undergraduate and practicing nurses to develop cognitive skills in addressing real-life clinical problems. This article describes the learning experiences within an elective nursing course designed to strengthen the clinical decision-making skills of students in the context of palliative care and interprofessional practice. A description of the course context, major learning assignment and evaluation rubic, and reflections on the learning process in terms of clinical decision-making and interprofessional practice provides an example of how meaningful learning opportunities can be used to prepare nurses for the challenges they will face as collaborative team members in their palliative clinical practice.

Survey of educators' end-of-life care learning needs in a Canadian baccalaureate nursing programme.

AIM: To examine the potential need for faculty development in end-of-life care (EOLC) of theory and clinical educators in a collaborative bilingual undergraduate nursing programme in a Canadian university. METHOD: A purposive sample of 53 Anglophone and Francophone theory and clinical educators completed the Palliative Care Quiz for Nursing, the Frommelt Attitude Toward Care of the Dying Scale and an adapted Educators Educational Needs Questionnaire (Patterson et al, 1997). RESULTS: Results indicated that educators held positive attitudes towards caring for dying patients and had modest knowledge levels. Participants identified personal educational needs, preferred learning formats, support and barriers to teaching EOLC and to their participation in continuing educational programmes. Strategies to enhance the teaching and learning of EOLC content in the theory and clinical context were suggested. CONCLUSION: Nurse educators require time, opportunities and relevant resources to develop the competencies required to support the theoretical and experiential learning of students in EOLC. Recommendations include a variety of approaches for faculty development initiatives, including face to face and virtual, which allow nurse educators to share expertise.

Health information systems design to support a nursing model of care: opportunities and challenges.

The design and implementation of health information systems (HISs) in team-based settings is complex owing to the multiple users with different perspectives who interact with the system. We argue that such perspectives must be understood prior to designing and implementing HISs. One specific type of team-based model is a nursing care model. In such a model, care is provided through an interdisciplinary team that is lead by the nursing staff. We analyze a nursing-based model of care according to the context of the organization, clinical unit, and individual as defined by the Contextual Implementation Model [1]. We then discuss how the nursing model will be affected by automation using different HISs.

Family caregivers' assessment of symptoms in patients with advanced cancer: concordance with patients and factors affecting accuracy.

The purposes of the study were to examine the concordance between patients' and family caregivers' assessments of patients' symptoms, and to identify demographic and psychosocial factors that affect levels of agreement. Sixty-six patients with advanced cancer receiving palliative care, and their primary, informal caregivers assessed patients' symptoms using the Memorial Symptom Assessment Scale (MSAS). Levels of agreement for individual symptoms ranged from poor to excellent (interclass correlation coefficient 0.07-0.75). Analysis of the group means using paired t-tests revealed significant differences for the MSAS subscales (psychological, physical, and general distress index), and for four of the 12 physical symptoms and five of the six psychological symptoms. The magnitude of the observed differences indicated a small to moderate bias for caregivers to overestimate, which was more marked for psychological than for physical symptoms. A number of factors associated with the caregiver (particularly the emotional state, the burden of providing care, and male gender) and the patient (the perception of being a burden to others) were significantly correlated with levels of disparity on some measures. The findings are consistent with the growing body of literature on the validity of proxy respondents' assessments of patients' symptoms.

Self-perceived burden to others: patient and family caregiver correlates.

AIMS: To provide further evidence about the prevalence and correlates of the sense of "self-perceived burden" (SPB) to others, and to examine its association with caregiver reports of burden. METHODS: The participants were 65 patients with advanced cancer and their family caregivers. Patients completed measures of SPB and family members completed a caregiver burden scale. RESULTS: SPB was experienced at minimal to mild levels by 35% of patients, and at moderate to extreme levels by another 28%. It was correlated with some physical symptoms, but more frequently with psychological symptoms. The family members of patients who reported that SPB was a significant problem had higher scores on the caregiver burden scale than family members of other patients (p=0.048), although the overall correlation was modest. CONCLUSIONS: SPB is a common and distressing concern for many patients receiving palliative care and is associated with a number of other distressing concerns.

Factors that influence engagement in collaborative practice: how 8 health professionals became advocates.

OBJECTIVE: To generate hypotheses regarding factors that might influence engagement in collaborative practice. DESIGN: Qualitative study using in-depth interviews. SETTING: Participants interviewed each other in dyads. The pairing was based upon geographical location and proximity to each other. PARTICIPANTS: Eight professionals from the disciplines of medicine, nursing, occupational therapy, physical therapy, and massage therapy. METHOD: Semistructured interviews, lasting 30 to 45 minutes each, were recorded and transcribed verbatim. The transcripts were read by all research team members using independent content analysis for common words, phrases, statements, or units of text for key themes. At a subsequent face-to-face meeting, the team used an iterative process of comparing and contrasting key themes until consensus was reached. The transcripts were then analyzed further for subthemes using NVivo software. MAIN FINDINGS: Initial findings suggest that some common characteristics grounded in family history, school experiences, social interactions, and professional training might influence collaborative practice choices. The narrative form of the interview broke down interpersonal and interprofessional barriers, creating a new level of trust and respect that could improve professional collaboration. CONCLUSION: This study suggests that life experiences from childhood into later adulthood can and do influence professional choices.

Providing direction for change: assessing Canadian nursing students learning needs.

AIM: To examine the current curriculum content and learning needs of graduating nursing students related to end-of-life care (EOLC). DESIGN: A survey method was employed. SAMPLE: A purposive sample of 58 Anglophone and Francophone students completed the Palliative Care Quiz for Nursing (PCQN) and Frommelt's Attitudes Toward Care of the Dying Scale (FATCOD). Students responded to open-ended questions regarding perceptions of preparedness to care for terminally ill patients, and provided suggestions for changes to the curriculum. Key informant educators identified opportunities to include EOLC content in courses and clinical placements. RESULTS: Results indicated that students held positive attitudes towards caring for dying patients, had modest knowledge levels, and that one third did not feel adequately prepared to care for dying patients. Although EOLC education tends to be threaded throughout the program, the emphasis is dependent upon the commitment of individual professors and clinical instructors with experience and/or expertise in this area. CONCLUSION: Students and educators agreed more emphasis on EOLC was needed. Recommendations include development of teaching strategies and experiential learning in EOLC throughout the curriculum.

Caring for patients with terminal delirium: palliative care unit and home care nurses' experiences.

AIM: To explore palliative care unit and home care nurses' experiences of caring for patients with terminal delirium. DESIGN: A qualitative exploratory design using individual interviews. SAMPLE: Participants included five nurses working in an interdisciplinary palliative care unit located in a large Canadian city hospital, and four nurses from a palliative home care nursing team located in the same city. RESULTS: Nurses in both sites experienced multiple challenges caring for delirious patients. Additional education on delirium and collaborative teamwork were viewed as key factors in enhancing their ability to care for and support this patient and family population. Four core themes reflected the participants' perceptions and experiences: experiencing distress; the importance of presence; valuing the team; and the need to know more. CONCLUSION: Findings suggest the need for interdisciplinary educational initiatives focused on the identification and management of terminal delirium, and targeted to the specific context in which nurses practise.

Terminal restlessness: perspectives of an interdisciplinary palliative care team.

AIM: To explore an interdisciplinary team's perceptions of families' needs and experiences surrounding terminal restlessness. DESIGN: A qualitative exploratory design using two focus groups. SAMPLE: Participants were members of an interdisciplinary palliative care team working in a palliative care unit in a university teaching hospital in Israel. RESULTS: The palliative care team confronted several challenging and stressful issues surrounding the management of terminal restlessness that influenced their treatment decisions and relationships with families. Four themes reflected the participants' perceptions and experiences: suffering, maintaining control, feelings of ambivalence and valuing communication to reduce conflict. CONCLUSION: Findings suggest the need for comprehensive treatment plans to meet the special supportive and information needs of these families, specific supportive strategies for the professional caregivers and further studies to develop ethical criteria and evidence-based guidelines for the use of sedation in the management of terminal restlessness.

A relational ethical approach to end-of-life delirium.

Delirium is a condition of acute onset and fluctuating course in which a person's level of consciousness and cognition become disturbed. Delirium is a common and distressing phenomenon in end-of-life care, yet it is underrecognized and undertreated. In this article, we review qualitative descriptions of the delirium experience in end-of-life care, found through a systematic search of academic databases, to generate insight into the intersubjective nature of the delirium experience. Our analysis of retrieved studies advances an understanding of the relational ethical dimensions of this phenomenon, that is, how delirium is lived by patients, families, and health care providers and how it affects the relationships and values at stake. We propose three themes that explain the distressing nature of delirium in palliative care: 1) experiences of relational tension; 2) challenges in recognizing the delirious person; and 3) struggles to interpret the meaning of delirious behaviors. By approaching end-of-life delirium from a perspective of relational ethics, attention is focused on the implications for the therapeutic relationship with patients and families when delirium becomes part of the dying trajectory.