Physicians' understandings and experience of advance care planning in Norwegian nursing homes: a qualitative study.

BACKGROUND: Advance care planning is a way of facilitating conversations with patients about future health care, values, and preferences at end of life. Nursing home physicians have the medical responsibility and the main obligation to facilitate planned meetings with patients. Although there has been a great deal of focus on establishing advance care planning in Norwegian nursing homes, it has yet to be widely implemented. Stated reasons are that the work routines in a nursing home do not include such meetings or that implementation seems complex due to frail patients. The aim of this study is thus to explore how physicians understand and experience advance care planning and follow-up of care plans in Norwegian nursing homes. METHODS: The study has a qualitative research design with a phenomenological-hermeneutic approach based on interviews of twelve nursing home physicians working in community care. Interviews were conducted in February 2023 to May 2023, using a semi-structured interview guide. All interviews were recorded on audio files, transcribed, and analyzed using structural text analysis. RESULTS: The findings are presented based on the following themes: (1) advance care planning is a dialog and a process, (2) advance care planning implies clarifying mutual expectations, and (3) advance care planning that brings relief and hope to patients is a medical art. CONCLUSIONS: Advance care planning is a complex and dynamic process that implies medical treatment, decisions on treatment level, pain relief, and formulation of care plans where the patient's self-determination and personal values are respected. It implies an ongoing dialogue between physicians, patients, and their relatives about values such as dignity, self-understanding, social relations, and existential questions at end of life. Advance care planning requires a holistic approach that meets patients' psychological and existential needs such as comfort, trust, hope, and respect as well as their preferences and concerns.

Family caregivers' preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home - a grounded theory study.

BACKGROUND: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. METHODS: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. RESULTS: The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation. CONCLUSION: Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.

Health Care Personnel's Perspectives on Quality of Palliative Care During the COVID-19 Pandemic - A Cross-Sectional Study.

Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic. Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents' demographics and quality of care, the latter measured by the short form of the Quality from the Patient's Perspective-Palliative Care instrument, adapted for HCP. The STROBE checklist was used. Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement. Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.

Preferences for home care to enable home death among adult patients with cancer in late palliative phase - a grounded theory study.

BACKGROUND: The wish to be cared for and to die at home is common among people with end-stage cancer in the western world. However, home deaths are declining in many countries. The aim of this study was to explore the preferences for home care over time to enable home death among adult patients with cancer in the late palliative phase. METHODS: A qualitative method was applied according to grounded theory (Corbin & Strauss, 2008). Data was collected using individual interviews (n = 15) with nine adult patients. One to two follow up interviews were conducted with four patients. Sampling, data collection and constant comparative analysis were undertaken simultaneously. RESULTS: The findings are presented as a conceptual model of patients' preferences for care to enable home death. The core category "Hope and trust to get the care I need to die at home" showed that the preference to die at home seemed stable over time and did not change with deterioration in health status and progression in illness. Five categories were related to the core category. The categories "being in the present", "be safe and in charge" and "be seen and acknowledged" describe the patients' preferences to live a meaningful life until death and be the same person as always. These preferences depended on the categories describing characteristics of healthcare personnel and the organisation of care: "reliable, compassionate and competent healthcare personnel" and "timely, predictive, continuous and adaptive organisation". CONCLUSION: An important preference over time was to be here and now and to live as meaningful a life as possible until death. Moreover, the patients preferred to retain control over their lives, to be autonomous and to be seen as the person they had always been. To achieve this, person-centred care provided by healthcare personnel with competence, skills and enough/ample time were required. In addition, home care needed to be organised in a way that ensured continuity and predictability. Systematic implementation of a person-centred care model and the use of advanced home care plans with continued re-evaluation for patients' preferences of home care were proposed measures to enable home death.

Nightingale's Legacy: Old Holistic Insight Supported by New Science.

Nursing today could benefit from building on Florence Nightingale's legacy. The aim of this article is to describe and discuss how her holistic approach to nursing is supported by scientific discoveries within human ecology, psychoneuroimmunology, and communicology. This combination may bridge the gap between current nursing practices and Nightingale's ethos.

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study.

BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.

Use of the CAM-ICU during daily sedation stops in mechanically ventilated patients as assessed and experienced by intensive care nurses - A mixed-methods study.

BACKGROUND: Mechanically ventilated patients are at risk of developing delirium, which increases mortality and prolongs their stay in the Intensive Care Unit (ICU). AIM: To investigate the assessment of delirium by ICU nurses and their experiences of using the Confusion Assessment Method for Intensive Care Unit (CAM-ICU) in mechanically ventilated patients during daily sedation stops. METHODS: The study employed an explanatory sequential mixed-methods design. The data (n = 30) were collected by two nurses who assessed the same patient (n = 15) using the tool. Data from the nurses' assessments were analysed by means of frequency analysis, while the interviews were analysed phenomenographically using Dahlgren and Fallberg's seven categories. FINDINGS: Four pairs of nurses made similar assessments, three pairs had differing assessments and in eight pairs, one of the nurses did not fill in the form properly. The interviews revealed variations in ICU nurses' preparation for, views on and use of the CAM-ICU. CONCLUSION: Assessment and use of the CAM-ICU revealed variations, indicating the necessity of identifying barriers within the ICU team. ICU nurses need training in the use of the CAM-ICU and support in their decision-making. The individual nurse must take responsibility for updating their knowledge and for following guidelines.

The relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality.

BACKGROUND: Little is known about the combination of person- and organization- related conditions and the relationships with patients' perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality. METHODS: A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n = 72), hospice day care (n = 51), palliative units in nursing homes (n = 30) and home care (n = 38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients' Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables - Person- and organization-related conditions, - while controlling for differences in covariates. RESULTS: Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person - related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality. CONCLUSION: Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from palliative care contexts are needed to confirm the findings and to investigate additional organizational factors that might influence patients' perceptions of care quality.

Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study.

BACKGROUND: Patients' perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients' perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings. METHOD: A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients' Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; "medical-technical competence" (MT) (2 factors), "physical-technical conditions" (PT) (one factor), "identity-orientation approach" (ID) (4 factors), "sociocultural atmosphere" (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples t-test and analysis of covariance while controlling for differences in patient characteristics. RESULTS: Patients' perceptions of care received within settings showed high scores for the factors and single items "honesty" (ID) and "atmosphere" (S) in all settings and low scores for "exhaustion" (MT) in three out of four settings. Patients' perceptions of importance scored high for "medical care" (S), "honesty" (ID), "respect and empathy" (ID) and "atmosphere" (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients' perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and "medical care" (S), the SC and "atmosphere" (S) for hospice day care, and "medical care" (S) for palliative units in nursing homes. There were no differences in subjective importance across settings. CONCLUSION: Strengths of services related to identity-orientation approach and a pleasant and safe atmosphere. Key areas for improvement related to receiving information. Perceptions of subjective importance did not differ across settings, but perceptions of care received scored higher in more care areas for hospice inpatient care, than in other settings. Further studies are needed to support these findings, to investigate why perceptions of care differ across settings and to highlight what can be learned from settings receiving high scores.

A Healthy Person: The Perceptions of Indonesian and Scandinavian Nursing Students.

The purpose of this exploratory study was to investigate how nursing students in Indonesia and Scandinavia characterize a healthy person. Two hundred thirty-two nursing students from Indonesia, 50 students from Sweden, and 119 students from Norway participated by answering an open-ended question. Qualitative content analysis was used to identify patterns of health in a cultural and national context. The characteristics of a healthy person were summarized in the theme "external and inner balance," which are intertwined because of the wholeness of self-image and appearance. The subcategories were having a strong and positive body image, feeling well and having inner harmony, following the rules of life, coping with challenges, and acting in unison with the environment. There were more similarities than differences between the Indonesian and Scandinavian nursing students' understanding of being a healthy person. The difference is that the Scandinavian students mentioned individuality, whereas the Indonesian students referred to collective values.

Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

BACKGROUND: Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. METHOD: A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. RESULTS: The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. CONCLUSION: The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was developed and psychometrically evaluated in a sample of Norwegian patients with various diagnoses receiving palliative care in different care contexts. The evaluation of the QPP-PC shows promising results, although it needs to be further validated and tested in other contexts and countries.

Patients' preferences in palliative care: A systematic mixed studies review.

BACKGROUND: It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient's combined preferences for all elements that constitute palliative care. AIM: The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research. DATA SOURCES: Studies were retrieved by searching databases - the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts - from 1946 to 2014, and by hand searching references in the studies included. DESIGN: A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis. RESULTS: The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme 'Living a meaningful life' illustrated what patients strived for. The opportunity to focus on living required the presence of 'Responsive healthcare personnel', a 'Responsive care environment' and 'Responsiveness in the organization of palliative care'. CONCLUSION: The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients' preferences.

Expectations and experiences of group supervision: Swedish and Norwegian preceptors' perspectives.

AIM: The aim of the present study was to describe preceptors' expectations and experiences of participating in group supervision (GS). BACKGROUND: The challenging role of preceptors and their need for support is well known. Therefore, a collaborative project was carried out, providing GS to preceptors to strengthen them in their role. METHOD: Data were collected from 48 preceptors by means of study-specific forms and field notes, and analysed using qualitative content analysis. RESULTS: Both positive and negative expectations and experiences of group supervision were found, but the positive experiences exceeded the expectations. The group in itself had a significant meaning for the preceptors; their pedagogical and personal competence increased and they became aware of their role as 'bridge-builders'. CONCLUSIONS: Using GS to strengthen preceptors in their role was found to be successful. The findings provided new arguments for this model as a reflection tool. IMPLICATIONS FOR NURSING MANAGEMENT: Strengthened preceptors can have an impact on nursing students' learning, and thereby also on future nurses' competence, which is a great concern of nurse managers. By using nurse lecturers as group leaders, the collaboration between the clinical placements and the nursing faculties can be improved.

Nursing care for patients on the edge of life in nursing homes: obstacles are overshadowing opportunities.

BACKGROUND: Patients in nursing homes have comprehensive needs for nursing care and medical treatment. Most patients benefit from the treatment, but some are 'on the edge of life'-in a borderland between living and dying with an unpredictable outcome, and questions are sometimes raised whether to withhold/withdraw curative treatment. AIM: The aim was to describe nurses' conceptions of good nursing care, and how this could be carried out for patients on the edge of life in nursing homes. DESIGN: In order to discover variations in the nurses' understandings a phenomenographic approach was chosen. Phenomenography is concerned with qualitatively different ways of conceiving a phenomenon. Methods. Fourteen nurses from two nursing homes were individually interviewed twice. A phenomenographic analysis was used. RESULTS: The outcome-space included two main categories. The first, 'good nursing care is to meet patients' needs for dignity,' included three description-categories: needs for 'preparedness', 'human relationship' and 'bodily comfort and safety'. The second, 'opportunities were overshadowed by obstacles' in carrying out nursing care encompassed three description-categories: 'organisational factors,''relational factors' and 'personal factors'. CONCLUSIONS: This study shows nurses' conceptions of the importance of good nursing care for comforting patients on the edge of life. IMPLICATIONS FOR PRACTICE: Several obstacles related to resources, communication, cooperation and nurses' professional strength and power need to be overcome if good nursing care can be performed.

Group supervision to strengthen nurses in their preceptor role in the bachelor nursing education--perceptions before and after participation.

BACKGROUND: A collaborative project was carried out at four bachelor nursing colleges in Sweden and Norway, to support preceptors in the clinical fields by means of group supervision. The aim of this study was to investigate the preceptors' views on their own ability and satisfaction in the role before and after taking part in group supervision during one year and to describe their perception of the supervision model used. METHOD: Forty-five preceptors participated in the study. Baseline and endpoint questionnaires were used for data collection. RESULTS: Before taking part in group supervision most preceptors expressed that they were content with their ability and knowledge with regards to the preceptor role. Despite this most of them considered that the participation had increased their ability to supervise students, and more than half of them considered that it also had promoted to their personal development. At the end of the project a majority of them had positive experiences of group supervision. Most of the structure and climate factors in the supervision model were considered important and almost all were highly realised. CONCLUSION: The study showed that group supervision could be a valuable tool to provide support to clinical preceptors in bachelor nursing education.

Norwegian and Swedish preceptors' views of their role before and after taking part in a group supervision program.

The research literature has shown the expectations towards preceptors and their need of support in their role. Group supervision has been used for many years to promote nurses in their professional role, but no study has been found on how group supervision can support them as preceptors. This study aimed to explore how group supervision could influence the preceptors' views of their role and how they valued this participation. Forty-eight preceptors, who took part in a 1 year group supervision program conducted by nurse lecturers, filled in open-ended questionnaires before the first and after the last session. The data were analyzed by means of qualitative content analysis. The findings showed changes in the participants' views of the preceptor role, indicating that this group supervision model had a positive influence on the preceptors' pedagogical and professional thinking and supported their attainment of good preceptorship. Further research is needed in using group supervision as a tool to support preceptors.

Being a nurse in nursing home for patients on the edge of life.

Nurses in nursing homes care for patients with complex health problems that need to be followed up by medical treatment. Most patients benefit from the treatment, but for some the treatment seems only to lengthen their death process. Sometimes questions are raised as to whether life-sustaining treatment should be withheld/withdrawn. Decisions related to such questions are difficult to make as some patients are 'on the edge of life', which is understood as a transition between living and dying with an unpredictable outcome, whether the illness will lead to recovery or dying. The aim of this study was to acquire a deeper understanding of what it is to be a nurse in a nursing home for patients on the edge of life. The research design was qualitative, based on hermeneutic phenomenology. Fourteen nurses at two nursing homes were interviewed twice. The result shows that when facing a patient on the edge of life, the nurses were challenged as professionals and as human beings. Two main themes were identified, which included two sub-themes each. The first main theme: 'striving to do right and good for everyone' included the sub-themes 'feeling certain, but accompanied by uncertainty' and 'being caught between too much responsibility and too little formal power'. The second main theme: 'being a vulnerable helper--the prize and the price', contained the sub-themes 'needing emotional protection in professional commitment' and 'feeling undervalued in spite of professional pride'. The essence was: 'being a lonely and enduring struggler between opposite poles'. The findings revealed paradoxes in nurses' work which might threaten nurses' professional identity and put heavy demands on their professional performance. There is a need for formal involvement in end-of-life decisions from nurses, further education and support to nurses related to patients on the edge of life.

Good nursing care to ICU patients on the edge of life.

Critically ill patients are admitted to intensive care units (ICUs) to receive advanced technological and medical treatment. Some patients seem not to benefit from the treatment, and sometimes questions are raised as to whether treatment should be withheld or withdrawn. This study was conducted using ICU nurses' experiences with the aim of acquiring a deepened understanding of what good nursing care is for these patients. The study was performed at an adult ICU in Norway, where 14 ICU female nurses were included as participants. The research design was based on interpretative phenomenology and data was collected by group interviews inspired by focus-group methodology. The participants were divided into two groups and each group was interviewed four times. Colaizzi's model was used in the process of analysis. The results show that good nursing care depended on several basic conditions: continuity, knowledge, competence and cooperation, and included clear goals to give appropriate life-saving -- or end-of-life treatment and care. Cornerstones in good nursing care were nurses' verbal communication and nurses' use of their hands. The study emphasises several consequences for future ICU nursing practice and education to enhance good nursing care to patients on the edge of life.

Being an intensive care nurse related to questions of withholding or withdrawing curative treatment.

AIMS AND OBJECTIVES: The aim of the study was to acquire a deeper understanding of what it is to be an intensive care nurse in situations related to questions of withholding or withdrawing curative treatment. BACKGROUND: Nurses in intensive care units regularly face critically ill patients. Some patients do not benefit from the treatment and die after days or months of apparent pain and suffering. A general trend is that withdrawal of treatment in intensive care units is increasing. Physicians are responsible for decisions concerning medical treatment, but as nurses must carry out physicians' decisions, they are involved in the consequences. DESIGN AND METHODS: The research design was qualitative, based on interpretative phenomenology. The study was carried out at an adult intensive care unit in Norway. Data were collected by group interviews inspired by focus group methodology. Fourteen female intensive care nurses participated, divided into two groups. Colaizzi's model was used in the process of analysis. RESULTS: The analysis revealed four main themes which captured the nurses' experiences: loneliness in responsibility, alternation between optimism and pessimism, uncertainty--a constant shadow and professional pride despite little formal influence. The essence of being an intensive care nurse in the care of patients when questions were raised concerning curative treatment or not, was understood as 'being a critical interpreter and a dedicated helper.' CONCLUSIONS: The findings underpin the important role of intensive care nurses in providing care and treatment to patients related to questions of withholding or withdrawing curative treatment. RELEVANCE TO CLINICAL PRACTICE: The findings also show the need for physicians, managers and intensive care nurses themselves to recognize the burdens intensive care nurses carry and to appreciate their knowledge as an important contribution in decision making.