To Örebro University

BACKGROUND: Persons diagnosed with progressive neurological disease who experience breathing difficulties and impaired cough function, are a vulnerable group. Some are in the late end-of-life stage, and providing the right kind of support is a challenge. There is a need to address the broader experiences of living with a progressive neurological disease including breathing difficulties and impaired cough function. Therefore, the aim was to explore persons' experiences of living with progressive neurological disease and breathing difficulties.

METHODS: We used qualitative content analysis, drawing on 15 interviews with 10 persons with progressive neurological disease.

RESULTS: Living with progressive neurological disease and breathing difficulties can be understood as a reconciliation with a difficult life, a powerlessness in the struggle against deterioration and a fluctuation between feelings of trust and mistrust. An acceptance of the severity was described and a strive to make the best of life. The ongoing struggle against deterioration brought feelings of uncertainty, fear, and powerlessness, impacting the entire life. Feeling safe, supported, and receiving symptom-relief care highlighted the importance of being listened to, feeling goodwill and caring presence of others. Feeling badly treated and, not respected as a whole and competent person, were expressed as being devastating and a sense of being abandoned by health care.

CONCLUSIONS: Our study emphasizes the importance of providing palliative person-centered care for this group. This implies a holistic, dignity-preserving, empathetic and compassionate care including symptom relief early in the illness trajectory.

Background: Most patients in need of palliative care remain in their homes, thus great focus should be placed on the creation of functional palliative homecare. Suffering through an often multifaceted illness and contemplating one's death can contribute to the loss of one's sense of dignity, and the preservation of patient dignity is a major challenge for health professionals worldwide.

Aim: The aim of the study was to explore and describe nurses' experiences of caring qualities alleviating suffering and preserving the dignity of patients in need of palliative homecare.

Research design: A qualitative exploratory study. In-depth semi-structured interviews as data collection method, and the qualitative content analysis of Graneheim and Lundman for data analysis. The theoretical perspective was based on Eriksson's caritative caring theory.

Participants and research context: A total of nine nurses with extensive work experience from a palliative homecare context participated in the study.

Ethical considerations: The study was conducted in accordance with the criteria set forth by the Finnish National Board on Research Integrity TENK. Research permission was granted and participants gave their written informed consent to participate in the study.

Findings: One main theme and three subthemes were found. The main theme was: Being there for the other alleviates suffering while shaping and reshaping dignity preservation in a process. The three subthemes were: (1) Being a sensitive and compassionate witness who becomes responsible, (2) Having compliance, courage, and perception in a deep presence, (3) Being calm and patient while having time for conducting skilled practical knowledge.

Conclusions: Certain caring qualities are important in the dignity-preserving care of people in need of palliative homecare, and person-centeredness plays a central role in alleviating suffering. Deep and trusting caring relationships and nurses' ability to customize the care being provided are significant in alleviating patient suffering and preserving dignity.

BACKGROUND: For cancer care to be high-quality, a shift is needed from a healthcare system that is designed around disease and institutions to one devised with a holistic perspective on human beings.

AIM: To gain a deeper understanding of healthcare professionals' experiences of the possibilities and limitations for providing person-centred care to alleviate suffering among patients within cancer care.

METHOD AND MATERIAL: A qualitative and explorative design was used. The data material consisted of texts from four focus group interviews with 15 nurses and physicians from a cancer clinic in Finland during January and February 2024. A qualitative content analysis was applied as a method. The COREQ checklist was used.

FINDINGS: Continuity, multidisciplinary collaboration, supporting collegial relationships, work ethics, and competence were seen as factors promoting person-centred care. The organisation's various boundaries, failure demand, and emotional limitations were seen as factors that limited person-centred care.

DISCUSSION: The organisational management and healthcare professionals' ability to collaborate with the patient can promote opportunities and limit barriers in the unpredictable reality of cancer care and so lead to increased person-centred care.

CONCLUSIONS: Healthcare professionals' internal abilities are comprehensive. If the healthcare organisation were more integrated through better collaboration and flexibility between different instances, cancer care could alleviate patient suffering and simultaneously reduce failure demand.

RELEVANCE TO CLINICAL PRACTICE: Factors such as failure demand slow down care work, and by gaining a deeper understanding of the problems, leaders, together with healthcare professionals in healthcare organisations, can find solutions to address the problems and save time and resources for the benefit of both patients and healthcare professionals.

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.

OBJECTIVE: The goal of this study was to explore patient-physical therapist interaction and the physical therapist's experience of the introductory session for mechanical insufflation-exsufflation (MI-E) device treatment for patients with progressive neurological disease.

METHODS: Qualitative content analysis of participant-observation of interaction between patients and physical therapists during 9 MI-E introduction sessions in different clinical care settings and 10 follow-up interviews with 6 physical therapists.

RESULTS: The introduction of MI-E emerged as a process of instilling a sense of security in the patient. The process can be described in 4 steps: (1) gain understanding by being responsive to the person's whole life-situation; (2) share knowledge and expectations in a respectful and permissive way; (3) introduce the device in a gentle and reciprocal interactivity; and (4) adapt to home-use in an inclusive dialogue with the patient and their significant others. Physical therapists described a need for assurance to instill a sense of security in the patient, implying a need for confidence, competent peers, guiding yet flexible routines, and emotional support.

CONCLUSION: Physical therapists have a need to foster assurance in employing a person-centered approach to make a patient feel secure in the process of introducing MI-E treatment. Multiple modes of professional knowledge were used together with action-based and relational-based ethics to facilitate a person-centered care approach. This seems to be a promising approach for providing good care when introducing MI-E to patients. Further research is needed to explore this from the patient's perspective.

IMPACT: This study added to the body of knowledge regarding MI-E treatment in relation to patients. This has direct implication, particularly for inexperienced physical therapists, for informed care for the patient during introduction. Our study also supports that person-centered care should be implemented at all levels of health care to make it possible for physical therapists to practice person-centered care.

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.

Texts about theory in nursing often refer to theory construction by using inductive methods in a rigid way. In this paper, it is instead argued that theories are created, which is in line with most philosophers of science. Theory creation is regarded as a creative process that does not follow a specific method or logic. As in any creative endeavour, the inspiration for theory creation can come from many sources, including previous research and existing theory. The main idea put forward is that deductive qualitative research approaches should play a key role in theory creation. Furthermore, there is a need to differentiate between theory creation and theory justification. A model that emphasizes the creative aspects of theory creation and theory justification using qualitative approaches is presented. The model suggests that knowledge development is a deductive trial-and-error process where theory creation is followed by testing. Scientific theory creation and justification are presented as an iterative process that is deductive in that a testable hypothesis is derived from the theory. If the hypothesis is falsified, then the theory needs modification or might be altogether wrong. Several factors can block the creative process, both in theory development and in finding ways to test a theory in the justification phase. Some of these blockers are the idea of 'building blocks' and the inductive view of science often brought forward in nursing. Other blockers include striving for consensus and adherence to existing nursing philosophies and existing theories. Research and knowledge development are creative processes, and following predefined methods is not enough to ensure scientific rigour in qualitative nursing research.

BACKGROUND: With an increasing older population, the pressure on home care resources is growing, which makes it important to ensure the maintenance of quality care. It is known that compassion and ethical sensitivity can improve the quality of care, but little is known about care leaders' perceptions on ethical sensitivity and compassion in home care and how it is associated with staff competence and thus quality of care.

AIM: The aim of the study was to explore home care leaders' perceptions of ethical sensitivity and compassion associated with care quality in home care.

RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach with a qualitative explorative design was used. The data consists of texts from 10 in-depth interviews with home care leaders. Content analysis was used as a method.

ETHICAL CONSIDERATIONS: The study was conducted following the ethical guidelines of the Declaration of Helsinki and the Finnish Advisory Board of Research Ethics. Research ethics permission was applied for from a Research Ethics Board.

FINDINGS: One overall theme and four subthemes were found. The overall theme was: "Compassion provides deeper meaning and ethical sensitivity provides means for knowing how to act".

DISCUSSION: If nurses fail to be sensitive and compassionate with patients, good and high qualitative home care cannot be achieved. Ethical sensitivity and compassion can be seen as resources in home care but the organization and the care leaders need to provide the support for these to develop.

CONCLUSION: This study provides an understanding of the meaning of ethical sensitivity and compassion as sources of strength and their link to quality of care in a home care context. Further studies could focus on how to build compassion and ethical sensitivity into home-based care and how to ensure adequate support for healthcare professionals' compassion and ethical sensitivity.

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.