Aim: The overall aim of the thesis is to deepen the caring science knowledge of breathlessness by intertwining the patient’s and the medical (epidemiological) perspective, with a focus on developing ambulance care for patients suffering from breathlessness.

Methods: Study I describes the lived experiences of breathlessness as reported by patients prior to ambulance care. Data collection consisted of 14 lifeworld interviews with a phenomenological approach. Studies II and III are based on retrospective observations, comprising a review of medical records to describe characteristics and outcomes (II) as well as to identify risk indicators for time-sensitive conditions and early death (III) among 7260 patients who were assessed by ambulance clinicians as suffering from breathlessness as the main symptom. Study IV focused on lived experiences of ambulance care as reported by patients with breathlessness. Data are based on 14 lifeworld interviews and analysed using a phenomenological approach.

Main findings: Breathlessness prior to ambulance care is described as an existential fear of losing control over one’s body and dying, which involves a battle to try to regain control. Approximately every second patient waited for more than two days before contacting the emergency services. There were more than 400 different final diagnosis codes and 11% of all patients had a time-sensitive final diagnosis. The 30-day mortality was11% among all patients and 27% among those with time-sensitive diagnoses. Risk indicators for having a time-sensitive diagnosis were seen among patients with a history of hypertension and renal disease as well as with e.g., a pathological ECG and pain. Older age, a history of renal disease and cancer were associated with early death. Deviating vital parameters were associated both with a time-sensitive diagnosis and early death. Being cared for by ambulance clinicians when experiencing breathlessness revealed that ambulance clinicians have the ability to provide existential, trustworthy care that was essential for patients to regain control over their breathing.

Conclusion: This thesis contributes new knowledge about breathlessness from the ambulance care perspective, in terms of how breathlessness is experienced by the patient intertwined with the epidemiological perspective. The thesis highlights the high complexity of both breathlessness and the care of these patients. The results provide guidance on how care can be developed to meet patients’ needs from a holistic perspective. Such knowledge is important for reducing suffering and providing an opportunity for patients with breathlessness to achieve health and wellbeing.

Background

Breathlessness is a serious and distressing symptom and a common reason why patients require prehospital care by ambulance clinicians. However, little is known about how patients experience this care when they are in a state of breathlessness.

Aim

The aim of this study is to describe the lived experiences of being cared for by ambulance clinicians when experiencing breathlessness.

Methods

Fourteen lifeworld interviews were conducted with patients who experienced breathlessness and were cared for by ambulance clinicians. The interviews were analysed using a qualitative phenomenological approach.

Findings

The essential meaning of being cared for by ambulance clinicians when experiencing breathlessness is described in two ways: existential humanising care, in which the experience is that of being embraced by a genuine presence or existential dehumanising care, in which feeling exposed to an objectifying presence is the main experience. This meaning has four constituents: surrendering to and trusting in the care that will come; being exposed to an objectifying presence is violating; being embraced by a genuine presence is relieving; and knowing is dwelling.

Conclusion

The findings reveal that the ability of ambulance clinicians to provide existential humanising and trustful care, which is the foundation of professional judgement, was essential in how patients responded to and handled the overall situation when breathlessness.

Abstract Aims and objectives The study aimed to describe how breathlessness is experienced by patients prior to prehospital care. Design A qualitative phenomenological design. Methods Lifeworld interviews were conducted with 14 participants. The analysis was carried out within the descriptive phenomenological framework. Results The essential meaning of the breathlessness phenomenon is described as an existential fear in terms of losing control over one?s body and dying, which involves a battle to try to regain control. This is further described by four constituents: being in an unknown body, striving to handle the situation, the ambiguity of having loved ones close and reaching the utmost border. Conclusions Patients describe a battling for survival. It is at the extreme limit of endurance that patients finally choose to call the emergency number. It is a challenge for the ambulance clinician (AC) to support these patients in the most optimal fashion.

Background

The emergency medical services (EMS) have undergone dramatic changes during the past few decades. Increased utilisation, changes in care-seeking behaviour and competence among EMS clinicians have given rise to a shift in EMS strategies in many countries. From transport to the emergency department to at the scene deciding on the most appropriate level of care and mode of transport. Among the non-conveyed patients some may suffer from “time-sensitive conditions” delaying diagnosis and treatment. Thus, four questions arise:

1) How often are time-sensitive cases referred to primary care or self-care advice?

2) How can we measure and define the level of inappropriate clinical decision-making?

3) What is acceptable?

4) How to increase patient safety?

Main text

To what extent time-sensitive cases are non-conveyed varies. About 5–25% of referred patients visit the emergency department within 72 hours, 5% are hospitalised, 1–3% are reported to have a time-sensitive condition and seven-day mortality rates range from 0.3 to 6%.

The level of inappropriate clinical decision-making can be measured using surrogate measures such as emergency department attendances, hospitalisation and short-term mortality. These measures do not reveal time-sensitive conditions. Defining a scoring system may be one alternative, where misclassifications of time-sensitive cases are rated based on how severely they affected patient outcome.

In terms of what is acceptable there is no general agreement. Although a zero-vision approach does not seem to be realistic unless under-triage is split into different levels of severity with zero-vision in the most severe categories.

There are several ways to reduce the risk of misclassifications. Implementation of support systems for decision-making using machine learning to improve the initial assessment is one approach. Using a trigger tool to identify adverse events is another.

Conclusion

A substantial number of patients are non-conveyed, including a small portion with time-sensitive conditions. This poses a threat to patient safety. No general agreement on how to define and measure the extent of such EMS referrals and no agreement of what is acceptable exists, but we conclude an overall zero-vision is not realistic. Developing specific tools supporting decision making regarding EMS referral may be one way to reduce misclassification rates.

Background: Dyspnoea (breathing difficulty) is among the most commonly cited reasons for contacting emergency medical services (EMSs). Dyspnoea is caused by several serious underlying medical conditions and, based on patients individual needs and complex illnesses or injuries, ambulance staff are independently responsible for advanced care provision. Few large-scale prehospital studies have reviewed patients with dyspnoea. This study aimed to describe the characteristics and final outcomes of patients whose main symptom was classified as dyspnoea by the prehospital emergency nurse (PEN).

Methods: This retrospective observational study included patients aged >16 years whose main symptom was dyspnoea. All the enrolled patients were assessed in the south-western part of Sweden by PENs during January and December, 2017. Of 7,260 assignments (9% of all primary missions), 6,354 fulfilled the inclusion criteria. Analysis was performed using descriptive statistics, and the tests used were odds ratios and Kaplan-Meier analysis.

Results: The patients mean age was 73 years, and approximately 56% were women. More than 400 different final diagnostic codes (International Statistical Classification of Diseases and Related Health Problems [ICD]-10^th edition) were observed, and 11% of the ICD-10 codes denoted time-critical conditions. The three most commonly observed aetiologies were chronic obstructive pulmonary disease (20.4%), pulmonary infection (17.1%), and heart failure (15%). The comorbidity values were high, with 84.4% having previously experienced dyspnoea. The overall 30-day mortality was 11.1%. More than half called EMSs more than 50 hours after symptom onset.

Conclusions:  Among patients assessed by PENs due to dyspnoea as the main symptom there were more than 400 different final diagnoses, of which 11% were regarded as time-critical. These patients had a severe comorbidity and 11% died within the first 30 days.

Background: Dyspnoea is one of the most common reasons for patients contacting emergency medical services (EMS). Pre-hospital Emergency Nurses (PENs) are independently responsible for advanced care and to meet thesepatients individual needs. Patients with dyspnoea constitute a complex group, with multiple different final diagnoses and with a high risk of death. This study aimed to describe on-scene factors associated with an increased risk of a time-sensitive final diagnosis and the risk of death.

Methods: A retrospective observational study including patients aged ≥16 years, presenting mainly with dyspnoea was conducted. Patients were identified thorough an EMS database, and were assessed by PENs in the southwestern part of Sweden during January to December 2017. Of 7260 missions (9% of all primary missions), 6354 were included. Among those, 4587 patients were randomly selected in conjunction with adjusting for uniquepatients with single occasions. Data were manually collected through both EMS- and hospital records and final diagnoses were determined through the final diagnoses verified in hospital records. Analysis was performed usingmultiple logistic regression and multiple imputations.

Results: Among all unique patients with dyspnoea as the main symptom, 13% had a time-sensitive final diagnosis. The three most frequent final time-sensitive diagnoses were cardiac diseases (4.1% of all diagnoses), infectious/inflammatory diseases (2.6%), and vascular diseases (2.4%). A history of hypertension, renal disease, symptoms of pain, abnormal respiratory rate, impaired consciousness, a pathologic ECG and a short delay until call for EMS were associated with an increased risk of a time-sensitive final diagnosis. Among patients with time-sensitive diagnoses, approximately 27% died within 30 days. Increasing age, a history of renal disease, cancer, low systolic bloodpressures, impaired consciousness and abnormal body temperature were associated with an increased risk of death.

Conclusions: Among patients with dyspnoea as the main symptom, age, previous medical history, deviating vital signs, ECG pattern, symptoms of pain, and a short delay until call for EMS are important factors to consider in the prehospital assessment of the combined risk of either having a time-sensitive diagnosis or death.

Background: ICU discharges are challenging practices that carry risks for patients. Despite the existing body of knowledge, there are still difficulties in clinical practice concerning unplanned ICU discharges, specifically where there is no step-down unit.

Aim: The aim of this study was to explore general ward nurses´ experiences of caring for patients being discharged from an ICU.

Design and Methods: Data were collected from focus groups and in-depth interviews with a total of 16 nurses from three different hospitals in Sweden. An inductive qualitative design was chosen.

Findings: The analysis revealed three themes that reflect the challenges in nursing former ICU patients: a vulnerable patient, nurses’ powerlessness and organisational structure. The nurses described the challenge of nursing a fragile patient based on several aspects. They expressed feeling unrealistic demands when caring for a fragile former ICU patient. The demands were related to their own profession and knowledge regarding how to care for this group of patients. The organisational structure had an impact on how the nurses’ caring practice could be realised. This evoked ethical concerns that the nurses had to cope with, as the organisation’s care guidelines did not always favour the patients. 

Conclusions and Relevance to Clinical Practice: The structure of the organisation and its leadership seem to have a significant impact on the nurses´ ability to offer patients the care they need. Moreover, this study sheds light on the need for extended outreach services in order to meet the needs of patients after the intensive care period.

Observationsstudier vilka baserades på retrospektiv journalgranskning. Urvalet bestod av samtliga ambulansuppdrag (n=7260) som klassificerats som ESS 04 (andnöd som huvudsymtom) av vårdare i ambulans under år 2017 i två upptagningsområden i sydvästra Sverige, vilket inkluderade 16ambulansstationer.Efter en manuell granskning av ambulansjournaler och sjukhusjournaler exkluderades 908 patienter (orsak: ålder < 16 år, personnummer saknades, ambulanstransporter till sjukhus utanför inkluderade upptagningsområden, dubbla ambulansjournaler, bristfällig dokumentation, felaktig ESS kod samt sekundärtransporter). Detta medförde att 6354 patienter slutligen inkluderades.

Etisk provning utförd nr: 989-17 (Gothenburg)