Documentation of older people's end-of-life care in the context of specialised palliative care: a retrospective review of patient records.

BACKGROUND: Palliative care focuses on identifying, from a holistic perspective, the needs of those experiencing problems associated with life-threatening illnesses. As older people approach the end of their lives, they can experience a complex series of problems that health-care professionals must identify and document in their patients' records. Documentation is thus important for ensuring high-quality patient care. Previous studies of documentation in older people's patient records performed in various care contexts have shown that such documentation almost exclusively concerns physical problems. This study explores, in the context of Swedish specialised palliative care, the content of documentation in older people's patient records, focusing on documented problems, wishes, aspects of wellbeing, use of assessment tools, interventions, and documentation associated with the person's death. METHODS: A retrospective review based on randomly selected records (n = 92) of older people receiving specialised palliative care, at home or in a palliative in-patient ward, who died in 2017. A review template was developed based on the literature and on a review of sampled records of patients who died the preceding year. The template was checked for inter-rater agreement and used to code all clinical notes in the patients' records. Data were processed using descriptive statistics. RESULTS: The most common clinical notes in older people's patient records concerned interventions (n = 16,031, 71%), mostly related to pharmacological interventions (n = 4318, 27%). The second most common clinical notes concerned problems (n = 2804, 12%), pain being the most frequent, followed by circulatory, nutrition, and anxiety problems. Clinical notes concerning people's wishes and wellbeing-related details were documented, but not frequently. Symptom assessment tools, except for pain assessments, were rarely used. More people who received care in palliative in-patient wards died alone than did people who received care in their own homes. CONCLUSIONS: Identifying and documenting the complexity of problems in a more structured and planned way could be a method for implementing a more holistic approach to end-of-life care. Using patient-reported outcome measures capturing more than one symptom or problem, and a systematic documentation structure would help in identifying unmet needs and developing holistic documentation of end-of-life care.

Bridging gaps in everyday life - a free-listing approach to explore the variety of activities performed by physiotherapists in specialized palliative care.

BACKGROUND: A growing body of studies indicate benefits of physiotherapy for patients in palliative care, for symptom relief and wellbeing. Though physiotherapists are increasingly acknowledged as important members of palliative care teams, they are still an underutilized source and not fully recognized. The aim of this study was to explore the variety of activities described by physiotherapists in addressing the needs and problems of patients and their families in specialized palliative care settings. METHODS: Using a free-listing approach, ten physiotherapists working in eight specialized palliative care settings in Sweden described as precisely and in as much detail as possible different activities in which patients and their families were included (directly or indirectly) during 10 days. The statements were entered into NVivo and analysed using qualitative content analysis. Statements containing more than one activity were categorized per activity. RESULTS: In total, 264 statements, containing 504 varied activities, were coded into seven categories: Counteracting a declining physical function; Informing, guiding and educating; Observing, assessing and evaluating; Attending to signs and symptoms; Listening, talking with and understanding; Caring for basic needs; and Organizing, planning and coordinating. In practice, however, the activities were intrinsically interwoven. The activities showed how physiotherapists aimed, through care for the body, to address patients' physical, psychological, social and existential needs, counteracting the decline in a patient's physical function and wellbeing. The activities also revealed a great variation, in relation not only to what they did, but also to their holistic and inseparable nature with regard to why, how, when, where, with whom and for whom the activities were carried out, which points towards a well-adopted person-centred palliative care approach. CONCLUSIONS: The study provides hands-on descriptions of how person-centred palliative care is integrated in physiotherapists' everyday activities. Physiotherapists in specialized palliative care help patients and families to bridge the gap between their real and ideal everyday life with the aim to maximize security, autonomy and wellbeing. The concrete examples included can be used in understanding the contribution of physiotherapists to the palliative care team and inform future research interventions and outcomes.

Palliative chemotherapy during the last month of life.

BACKGROUND: This study analyses the potential discriminative characteristics for patients with incurable cancer who received palliative chemotherapy during their last month of life. PATIENTS AND METHODS: The study includes all patients with epithelial cancer treated with palliative chemotherapy who died in 2008 in northern Sweden. Demographic parameters and care utilization data were registered. Data were analyzed using nonparametric methods. RESULTS: Of 374 included patients, 87 (23%) received chemotherapy during the last month of life. These patients had a significantly shorter survival time from first palliative treatment to death, were admitted more frequently to hospital, more often lacked a documented decision to cease treatment, and died less frequently at home. CONCLUSIONS: The results indicate covariations between palliative chemotherapy treatments in the last month of life and unfavorable patient outcomes. As almost one of four patients with incurable cancer received their last round of palliative chemotherapy <31 days before death, there is a potential for improved routines.

Striving for becoming at-home in the midst of dying.

Research interviews with 12 patients at an inpatient, free-standing hospice in Sweden were analyzed, using a phenomenological hermeneutic approach, to show the effects of individual nursing care as experienced by the guests. The findings revealed that the effects of, and reactions to, nursing care were inseparable from the hospice milieu and the patients' situation, which was interpreted as including the prospect of becoming homeless. Thus, the effects of hospice spirit (nursing care and milieu) as experienced by these hospice patients represented the contrasting possibilities of hindering--or contributing to--the prospect of becoming homeless. What the patients spoke about was either a consoling or a desolating hospice spirit. A consoling hospice spirit supports experiences of wholeness and communion, i.e., becoming at-home in the midst of dying, while a desolating hospice spirit results in feelings of alienation and fragmentation, i.e., feeling homeless. Considering the dying person to be a guest rather than a patient is an important component of Swedish hospice philosophy and supports the view of the dying person as an autonomous and dignified human being.

Nurses' work in a hospice and in an oncological unit in Sweden.

This paper presents the results of a work-sampling study aimed at describing and comparing the activities of nurses at a free-standing in-patient hospice and a hospital oncological unit. Data suggests that although patient care at both sites is structured by organizational routines, the content and quantity of the nurses' physical and emotional labor differed markedly. Hospice nurses spend significantly more of their working time with patients and/or relatives (37%) than the oncological nurses (21%). When they are with patients the nurses in both settings are most often performing a physical activity such as helping patients with their daily activities in the hospice, and helping patients with needs in relation to investigations and treatment in the oncological unit.

Feasibility and safety of inducing modest hypothermia in awake patients with acute stroke through surface cooling: A case-control study: the Copenhagen Stroke Study.

BACKGROUND AND PURPOSE: Hypothermia reduces neuronal damage in animal stroke models. Whether hypothermia is neuroprotective in patients with acute stroke remains to be clarified. In this case-control study, we evaluated the feasibility and safety of inducing modest hypothermia by a surface cooling method in awake patients with acute stroke. METHODS: We prospectively included 17 patients (cases) with stroke admitted within 12 hours from stoke onset (mean 3.25 hours). They were given hypothermic treatment for 6 hours by the "forced air" method, a surface cooling method that uses a cooling blanket with a flow of cool air (10 degrees C). Pethidine was given to treat compensatory shivering. Cases were compared with 56 patients (controls) from the Copenhagen Stroke Study matched for age, gender, initial stroke severity, body temperature on admission, and time from stroke onset to admission. Blood cytology, biochemistry, ECGs, and body temperature were monitored during hypothermic treatment. Multiple regression analyses on outcome were performed to examine the safety of hypothermic therapy. RESULTS: Body temperature decreased from t(0)=36.8 degrees C to t(6)=35.5 degrees C (P:<0.001), and hypothermia was present until 4 hours after therapy (t(0)=36.8 degrees C versus t(10)=36.5 degrees C; P:=0.01). Mortality at 6 months after stroke was 12% in cases versus 23% in controls (P:=0. 50). Final neurological impairment (Scandinavian Stroke Scale score at 6 months) was mean 42.4 points in cases versus 47.9 in controls (P:=0.21). Hypothermic therapy was not a predictor of poor outcome in the multivariate analyses. CONCLUSIONS: Modest hypothermia can be achieved in awake patients with acute stroke by surface cooling with the "forced air" method, in combination with pethidine to treat shivering. It was not associated with a poor outcome. We suggest a large, randomized clinical trial to test the possible beneficial effect of induced modest hypothermia in unselected patients with stroke.

How patients spend their time in a hospice and in an oncological unit.

This paper presents the findings from a work sampling study. At 10-minute intervals the activities of patients in a hospice, and in an oncological unit were monitored for a day or a night. In total, 5286 observations of patient activities were recorded. The findings showed that being a patient, especially in the oncological unit, was apparently a very lonely experience with limited social interaction and purposeful activity. Hospice patients, in contrast, were less alone, spending much of their time with their relatives. Although none of the patients at either site spent a major part of either day or night with nurses, hospice patients and nurses spent significantly more time together, and their encounters more often lasted longer. Nursing care at both sites was mainly related to 'doing' rather than 'being', i.e. when with patients, nurses most often had some task to accomplish. The study shows the importance of increasing our understanding of the use of time and the combination of doing and being that reflects good nursing care of the dying.

Stories of being a hospice nurse: a journey towards finding one's footing.

This article sheds light on the meaning of the lived experience of being a hospice nurse, as interpreted from in-depth interviews with 18 hospice nurses. The nurses' stories were analyzed using a phenomenologic-hermeneutic approach inspired by the philosophy of Ricoeur. Findings were synthesized into two themes: pursuing meaningful hospice care and pursuing spiritual integrity. Results indicated that it was the nurses' conceptions of "ideal" hospice practice that seemed to be the lens through which the nurses experienced and interpreted "real" practice as being either vitalizing or devitalizing. Results also indicated that being a hospice nurse means being visible as a person, in the sphere between the sacred and the profane and on the border between eternity and the finite. In narrating these experiences, the nurses used metaphors pointing towards "the sacred" and a "consciousness of fault." The tension between "ideal" and "real" hospice practices, and the nurses' vitalizing and devitalizing experiences and their use of metaphors in narrating these experiences are interpreted in the light of Bauman's two "life strategies" of deconstructing mortality and immortality, and Ricoeur's Symbolism of Evil.

Stories about becoming a hospice nurse. Reasons, expectations, hopes and concerns.

Two months after the opening of Sweden's first purpose-built free-standing hospice, 19 nurses were asked to narrate their reasons, expectations, hopes, and concerns about their future work as hospice nurses. The stories were analyzed using a phenomenological-hermeneutic approach inspired by the philosophy of Ricoeur. The tension between endurance and enjoyment seems to be the essential feature of the nurses' stories. The nurses who were experienced in terminal care hope and expect to enjoy being hospice nurses, provided they are able to give good terminal care, that is, nursing care that is experienced as being meaningful. Those nurses who are inexperienced in terminal care hope and expect that they will be able to give and to grow as people and to develop as professionals, but do not yet know what to make of their experiences. Possible implications of the nurses' reasons, expectations, hopes, and concerns are discussed, and an understanding of the tension between endurance and enjoyment of being a hospice nurse is presented.

Nurses' perception of the phenomenon confusion in elderly hospitalized patients.

The purpose of this descriptive study was to identify nurses' perception of signs, symptoms, assessment and reversibility of confusion in elderly hospitalized patients. The convenience sample consisted of 10 registered nurses working in an acute care setting. Data were collected using an open-ended interview guide and analyzed via qualitative analysis. The results showed that all of the subjects found behaviours indicative of disorientation, memory impairment, altered awareness of own situation and safety needs, aggressive behaviour, and altered ability to interact were components of confusion. Altered awareness of own situation, disorientation and altered ability to interact were found to be critical indicators of confusion. No consistent means to assess the presence and level of confusion was identified. The assessment of causes of confusion was primarily physical in nature with some psycho-social factors included. Confusion was considered reversible if it had an acute onset and a physiological cause. Replication of the study is recommended using a larger sample of nurses in a variety of settings, to more clearly define and delineate categories of mental functioning and develop assessment tools.