Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious.

Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals.

Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention.

Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention.

Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals

Background: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. Objective: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. Methods: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Results: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, pless than0.001, 13% versus 4%, pless than0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Conclusions: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patients situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

BACKGROUND:

Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.

AIMS:

This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.

METHODS:

A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.

RESULTS:

In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.

CONCLUSION:

Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.

Several studies show that how patients have difficulties in changing lifestyle even though such changes are essential because they are suffering from a life-threatening disease. Coronary artery disease (CAD) patients met 13 times during a year and used problem-based learning (PBL) to improve their empowerment and self-efficacy in making lifestyle changes. District nurses functioned as tutors, helping patients to formulate issues and to state self-care goals. To identify and describe the enactment of PBL, an ethnographic approach was used, including, for example, participant observations and interviews, all derived from six sessions of the education programme. Five different enactments were found, metaphorically expressed as: ‘The study circle’, ‘The classroom’, ‘The expert consultation’, ‘The therapy session’ and ‘The coffee party’. The education programme did not always function as it was supposed to according to the model, but perhaps this should not be seen as a failure of the pedagogical intervention since these enactments as a whole seem to be a way for the patients to be able to make healthy lifestyle changes. The metaphors can broaden the understanding of what can happen when implementing problem-based learning in health care practice.

Background

Even though there is convincing evidence that self-care, such as regular exercise         and/or stopping smoking, alters the outcomes after an event of coronary heart disease         (CHD), risk factors remain. Outcomes can improve if core components of secondary prevention         programmes are structurally and pedagogically applied using adult learning principles         e.g. problem-based learning (PBL). Until now, most education programs for patients         with CHD have not been based on such principles. The basic aim is to discover whether         PBL provided in primary health care (PHC) has long-term effects on empowerment and         self-care after an event of CHD.     

Methods/Design

A randomised controlled study is planned for patients with CHD. The primary outcome         is empowerment to reach self-care goals. Data collection will be performed at baseline         at hospital and after one, three and five years in PHC using quantitative and qualitative         methodologies involving questionnaires, medical assessments, interviews, diaries and         observations. Randomisation of 165 patients will take place when they are stable in         their cardiac condition and have optimised cardiac medication that has not substantially         changed during the last month. All patients will receive conventional care from their         general practitioner and other care providers. The intervention consists of a patient         education program in PHC by trained district nurses (tutors) who will apply PBL to         groups of 6–9 patients meeting on 13 occasions for two hours over one year. Patients         in the control group will not attend a PBL group but will receive home-sent patient         information on 11 occasions during the year.     

Discussion

We expect that the 1-year PBL-patient education will improve patients’ beliefs, self-efficacy         and empowerment to achieve self-care goals significantly more than one year of standardised         home-sent patient information. The assumption is that PBL will reduce cardiovascular         events in the long-term and will also be cost-effective compared to controls. Further,         the knowledge obtained from this study may contribute to improving patients’ ability         to handle self-care, and furthermore, may reduce the number of patients having subsequent         CHD events in Sweden.