To Örebro University

Background: Many patients who receive palliative home care wish to die at home, even when the symptom of the disease deteriorates. Despite this, large number of patients die in hospital. 

Aim: To map the occurrence of patients receiving specialized palliative home care being transported to hospital near death in Sweden. 

Methods: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients ≥18 years of age enrolled in specialized palliative home care with dates of death 2015 11 01 – 2022-10-31 were included (n= 39,698). Descriptive statistics were used to compare patients who were transported to hospital and died there within seven days of arrival, and patients who were not transported or transported earlier than seven days before death.

Results: Of the total study population, 7,383 patients were identified as dying in hospital/other care unit within 7 days of transport from specialized palliative home care. The majority (74%) were admitted to a specialized palliative care unit, 23% to a non-specialized palliative care unit and 3% to additional care units. Most patients died 1-2 days after arriving at the hospital. No clinical relevance differences were noted regarding sex, age, or diagnosis when comparing transported patients with non-transported patients, whereas the transported patients had more frequent dyspnea (31% vs. 23%, p <0.001) and anxiety (60% vs. 57%, p<0.001). Presence of several simultaneous symptoms was significantly more common in the transported group (27% vs. 25%).

Conclusion: Many patients enrolled in specialized palliative home care were transported and died in hospital. Most died 1-2 days after arrival. They had complex symptoms and not all patients were admitted to a specialist palliative care unit. Some common denominators, such as symptoms and symptom burden, can be noted in the patients who are transported, but more studies are needed to identify the causal relationship of these transports.

Patients near death being transported to emergency care despite receiving specialized palliative home care - A registry study

Background: A significant proportion of patients who receive palliative home care express a preference for dying at home, even when the symptoms of their disease deteriorate. Despite this, a large number of patients die in hospital, suggesting that patients are transported from home to emergency care. These transports can mean that dying patients end up in the emergency department, a place that is less suited to end-of-life care. The emergency department environment poses great challenges for emergency nurses trying to care for patients near death. Lack of space, time and staff are cited as the main barriers.   

The aim of this study was to map data on patients near death who had received specialized palliative home care and were transported to hospitals in Sweden.

Method: A national retrospective cross-sectional study was conducted using data from the Swedish Register of Palliative Care. The study included patients aged 18 years or above who were enrolled in specialized palliative home care and who died between 1 November 2015 and 31 October 2022 (n=39,698). Descriptive statistics were utilized to contrast patients who were transported to hospital and subsequently died within seven days of arrival, with patients who were not transported or transported earlier than seven days before death.

Results: A total of 7,383 patients were identified as having died within seven days of being transported from specialized palliative home care to a hospital or other care unit. The majority (74%) were admitted to a specialized palliative inpatient care unit, 23% to a non-specialized palliative inpatient care unit, and 3% to additional care units. The majority of these patients died within one to two days of arrival at the hospital. No clinical relevance was observed in the comparison of transported patients with non-transported patients with regard to sex, age, or diagnosis. However, transported patients exhibited a higher prevalence of dyspnoea (31% vs. 23%, p <0.001) and anxiety (60% vs. 57%, p <0.001). The simultaneous occurrence of multiple symptoms (e.g., confusion/anxiety, pain/severe pain, dyspnoea/respiratory secretion) was significantly more prevalent in the transported group (27% vs. 25%).

Discussion & Conclusions: A significant proportion of patients enrolled in specialized palliative home care were transported to hospital and subsequently died there. The majority of patients died within one or two days of admission. Complex symptoms were present, and not all patients were admitted to a specialized palliative inpatient care unit. Some commonalities, such as symptoms and symptom burden, can be observed in the patients who were transported. However, further studies are required to identify the causal relationship between these transports. Our study visibilises a phenomenon that can be experienced by the involved patients, relatives, and healthcare personnel as a major event in a vulnerable situation. We see a necessity to gain a deeper understanding of the underlying reasons for this type of transport and whether they are compatible with good palliative care and a dignified death.

Background: The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death.

Aim: To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden.

Methods: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients >= 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used.

Results: Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p 0.001).

Conclusion: The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to ascertain whether they are compatible with good palliative care and a dignified death.

Kartläggning av transporter till sjukhus av patienter nära livets slut som får specialiserad palliativ hemsjukvård - en nationell registerstudie

Camilla Wall 1,2, Karin Blomberg 2, Elisabeth Bergdahl 2, Helena Sjölin 2 & Fredrik Alm 2

1 Onkologiska kliniken, Universitetssjukhuset Örebro, Region Örebro Län

2 Institutionen för Hälsovetenskaper, Fakulteten för Medicin och Hälsa, Örebro universitet

Bakgrund: Tidigare forskning visar att majoriteten av patienter som erhåller palliativ vård i hemmet har en önskan om att få dö där. Viljan att få dö i hemmet kvarstår i de flesta fall även när symtomen av sjukdomen intensifieras. Samtidigt har det visat sig att det sker transporter till sjukhus av patienter nära livets slut som erhåller specialiserad palliativ hemsjukvård.

Frågeställning: Att kartlägga förekomsten av transporter till sjukhus av patienter nära livets slut som vårdas med specialiserad palliativ hemsjukvård i Sverige.

Metod: En nationell retrospektiv tvärsnittsstudie baserad på data från Svenska Palliativregistret. Patienter inskrivna i specialiserad palliativ hemsjukvård med dödsdatum 2015 10 31 – 2022-10-31 inkluderades.

Resultat: Totalt 7 383 patienter identifierades dö på sjukhus/annan vårdenhet inom 7 dagar från transport från specialiserad palliativ hemsjukvård. Vanligast var att de transporterade avled på sjukhuset dygn 1-2 efter ankomst. Av dessa patienter blev majoriteten (74%) inlagda på en specialiserad palliativ vårdavdelning, medan 23% blev inskrivna på icke-specialiserade palliativa vårdavdelningar och 3% till övriga vårdenheter. Vid jämförelse med patienter som inte transporterades eller transporterades tidigare än 7 dagar från dödstillfället (n= 32 315), noterades inga signifikanta skillnader av klinisk relevans beträffande kön, ålder eller diagnos. Båda grupperna hade en komplex symtombild, men signifikant fler patienter i den transporterade gruppen uppvisade symtom som andnöd (31% vs. 23%, p <0.001) och ångest (60% vs. 57%, p <0.001). Förekomst av flera samtidiga symtom (förvirring/ångest, smärta/svår smärta, andnöd/rosslighet) var vanligare i den transporterade gruppen (27% vs. 25%).   

Konklusion: Stort antal patienter inskrivna i specialiserad palliativ hemsjukvård transporteras och dör på sjukhus. Patientgruppen har komplex symtombild och alla patienter blir inte inskrivna på en specialiserad palliativ vårdavdelning när de anländer till sjukhus. Vissa karaktäristiska kan noteras hos dem som transporteras, men fler studier är nödvändiga för att kunna identifiera orsakssambandet till att dessa transporter sker.

Background: In the Swedish emergency medical services, single responder and assessment units have beenimplemented to meet the increasing need for ambulance assessment and care.

Aim: To describe registered nurseś experiences of care encounters as single responders in the emergency medicalservices.

Method: The study design was descriptive with a qualitative approach. Semi-structured interviews with eightsingle responders were used together with inductive content analysis.

Results: From the theme which showed the experiences of being a single responder in the caring encounter in theambulance care “meeting unique human care needs with conscious caution”, three categories emerged: Increasedrisk-awareness, Lack of resource support creates vulnerability and Professional experiences and personal qual-ities contribute to patient safety.

Conclusion: The single responders was aware of their vulnerability and a consistent theme was “caution”. Riskassessments had evolved and were constantly present to maintain their own and the patient’s safety. In criticalpatients, the experience of frustration and insufficiency dominated but at the same time there was a sense ofmeaningfulness. The main experience among all single responders was the feeling of getting close to the patientand responding to them in their own way.

This study aimed to describe experiences of managing mental health and psychosocial activities during the first six months of the COVID-19 pandemic in Sweden. A national survey was answered by a non-probability sample of 340 involved in the psychosocial response. The psychosocial response operations met several challenges, mainly related to the diverse actors involved, lack of competence, and lack of preparations. Less than 20% of the participants had received specific training in the provision of psychosocial support during major incidents. The interventions used varied, and no large-scale interventions were used. The psychosocial response organizations were overwhelmed by the needs of health care staff and failed to meet the needs of patients and family members. An efficient and durable psychosocial response in a long-term crisis requires to be structured, planned and well-integrated into the overall pandemic response. All personnel involved need adequate and specific competence in evidence-based individual and large-scale interventions to provide psychosocial support in significant incidents. By increasing general awareness of mental wellbeing and psychosocial support amongst health professionals and their first-line managers, a more resilient health care system, both in everyday life and during major incidents and disasters, could be facilitated.

INTRODUCTION: The ambulance care setting is complex and unpredictable and the personnel must prepare for upcoming assignments. Prehospital emergency care nurses (PENs), are frequently exposed to critical incidents (CIs). There are, to our knowledge, no prior studies describing experiences of requirements for management of caring for a patient during a CI in the ambulance care context. Therefore, the aim of the study was to explore PENs' experiences of care in CIs.

METHOD: A qualitative research design with content analysis has been used, based on semi-structured interviews with eleven PENs in Sweden.

RESULTS: PENs' experiences can be described as: "In a critical incident, personal ability based on experiential knowledge is central to patient care". Three generic categories underpinned the main category: "Clinical expertise", "Professional approach" and "Broad knowledge base".

CONCLUSIONS: The care given during a CI in the ambulance care setting depends on PENs' personal ability based on experiential knowledge. Employers need to build an organization providing prerequisites and support during an CI. Suggested activities are to create forums for PENs to share experiences with each other, possibility to get feedback on completed assignments and continued training to develop new knowledge and be prepared for the unpredictable environment that characterizes CI.

Being part of a decentralized system Swedish schools have a rather large possibility to shape their own activities. In the present article we analyze the activities of different schools, working with children who are considered to have problems relating to others. Four schools represent a traditional way to work with these children. In contrast, two additional schools present challenges towards this tradition. Specifically, the work of these two latter schools is focused. The analysis is built upon interviews with 3 persons in each school: the headmaster, one teacher and the special educational needs coordinator (the SENCO). The two groups of schools are compared with regard to a number of themes: organizational solutions, the importance of school leadership, the role of the “small group”, the role of the SENCOs, occupational development, preventive work, and relations. The two groups of schools differ with regard to all these themes. Finally we discuss the implications of the two different approaches.

This licentiate’s dissertation is about how school staff talk about pupils having difficulties in relating to teachers and other pupils. It’s specific focus is on pupils which are described as “disturbing”, “troublesome”,”unruly”, “unconcentrated” or characterised by similar concepts. The main aim is to elucidate and discuss how school staff explain pupils’ difficulties, what measures they state that they undertake and what measures they consider necessary.

The study is based on a social constructive approach. This means that the way we understand the world we live in is seen as shaped by social and cultural processes mediated through language. A consequence of this is that the way the staff talk about pupils in difficulties will influence how they relate to those children and how they work at solving the problems.

The empirical material consists of interviews with six principals, six Special Educational Needs Co-ordinators and six class teachers from six different schools. 15 of the people interviewed work with 11–13 year olds and three of them with 7–9 year olds. The material from the interviews is categorised into themes and further analysed in order to present a systematic overview of the ways in which the staff talk about children in difficulties.

The result shows that the problems are understood as complex and full of nuances. Explanations of the problems from medical/psychological perspectives have no distinguished status. It is more common that the problems are related to social conditions, family situation and school environment.

The study also shows that different professional groups usually place the responsibility for solving the problems with other professional groups. The way the concerned principal looks upon the problem seems be important for the way the problem is dealt with.

The way the staff studied talk about the school activities indicates that schools differ concerning issues like organisation, the role of the Special Needs Co-ordinator, co-operation between different professional groups etc. As a consequence pupils having difficulties in relating to other people will be subjected to different conditions depending on what school they attend. The school as an arena of identity creation and citizenship education will offer hence different opportunities to different children in difficulties.