Background
Chronic heart failure (CHF) is one of the most common non-communicable diseases worldwide with an estimated prevalence rate of 2 % among the adult population [
1]. Further, it is associated with high mortality rates [
2]. Patients affected by CHF are suffering from multiple symptoms like dyspnoea [
3], pain [
4], and fatigue [
5]. These symptoms lead to a reduction in physical capacity [
5] and an impaired ability to perform activities of daily living [
6,
7]. In consequence, patients with CHF, especially in an advanced stage of the disease, are dependent on the help of others [
8].
According to the World Health Organisation palliative care refers to the improvement of quality of life of patients with life-threatening diseases by reduction and prevention of physical and psychological suffering through early identification and treatment [
9]. Palliative care is not restricted to specific diagnoses but is mostly provided for oncological patients [
10]. Even though symptom burden of CHF patients is as high as in patients with malignant diseases, data suggest that palliative care for CHF patients and patients with malignant diseases differs qualitatively as well as quantitatively [
11,
12]. Reasons for the differences in the provision of palliative care for patients with malignant and non-malignant diseases are manifold, but could be mainly attributed to health care providers’ attitudes towards and their experience with palliative care [
12‐
17]. Physicians’ and nurses’ perceived barriers to refer CHF patients to palliative care are based on the experience of poor interprofessional communication and collaboration [
13,
15,
18] and divergent philosophies of different health care providers (cardiologist vs. general practitioner, nurses vs. physicians) [
15,
17,
18], poor knowledge [
13] about and insufficient skills to perform palliative care by general practitioners and cardiologists [
13‐
15,
17], and difficulties identifying the appropriate time to refer CHF patients to palliative care [
15,
16]. Furthermore, some health care providers think that there are not enough CHF patients to refer to palliative care [
19] and that CHF patients do not want to discuss end-of-life issues [
14‐
17]. A study conducted in Belgium found that general practitioners who are supposed to perform and coordinate primary palliative care only assessed acute care needs. As patients did not articulate non-acute palliative care needs to their general practitioner early identification of those needs barely happened [
13].
Due to the mostly irreversible nature of CHF and the high symptom burden for patients and caregivers, access to palliative care services is recommended for these patients [
20]. Further, research findings suggest that CHF patients benefit from palliative care as reflected in less drug use and hospitalisation rates as well as higher quality of life [
21,
22]. Moreover, studies with patients with CHF revealed that patients and their caregivers need early support in order to better handle illness-related shortcomings, symptoms, and further proceedings [
23,
24].
As health care systems differ with respect to provider education, responsibilities of the different health care providers, and organisation of care, data about experiences with and perceived barriers and facilitators regarding palliative care for CHF patients should be collected and analysed specifically for different countries. In fact, there are also differences regarding palliative care for patients with CHF and malignant diseases in Germany. For example, in 2014 only 3.3 % of all patients receiving palliative care were diagnosed with a cardiovascular disease as primary diagnosis [
25]. Therefore, to add evidence to this field and to evaluate the situation within the German health care setting we conducted this study seeking to evaluate health care providers´ (nurses and physicians) attitudes towards and experiences with palliative care for patients with CHF in order to identify barriers and facilitators and hence develop recommendations for improvement of those patients’ access to palliative care.
Discussion
This is the first study which has investigated health care professionals’ attitudes regarding palliative care for heart failure patients in Germany. The provision of palliative care for CHF patients was largly appreciated by the interviewees as a need for palliative care in this patient group was cited. Although the WHO recommends an early initiation, palliative care was mainly understood as end of life care by interviewees. According to Radbruch and Payne [
10] end of life care can be regarded synonymous with palliative care but also more specifically as care in the last days or hours of life. In this study health care professionals tended to focus on the latter when referring to palliative care.
Regarding perceived barriers to palliative care for CHF patients, the results of international studies were replicated. Some physicians thought that there was no need for palliative care for CHF patients [
19] as too few patients would benefit from it. Further, it was stated that patients do not accept their mortality [
14‐
17] and hence do not want to be treated palliatively. Poor knowledge [
13] about palliative care as applicable for patients with CHF was also described as a barrier as well as lack of cooperation and different point of views between the different professional groups involved in care of CHF patients [
11,
13]. Delphi methods conducted within the German health care system regarding improvement of palliative care in general also found that closer cooperation between the professionals involved in care is necessary [
29,
30]. Bekelman and colleagues [
31] tested a collaborative care model for patients with CHF including palliative care gaining promising results.
Despite the shortcomings of professional cooperation, cardiology especially was described as a discipline which prolongs curative treatment as medical limits cannot be accepted. Previous research has also identified cardiologists’ procedures as barriers to palliative care as patients’ palliative care needs are not recognised, no holistic approach is practiced [
15], and few cardiologists are discussing palliative care issues with patients even though being recommended by guidelines [
32]. However, non-acceptance of medical limits was not identified as a barrier. Cardiologists’ training programmes should try to convey a more realistic picture about medical limits especially when it comes to non-communicable diseases, and palliative care should be covered in more depth.
There was no consensus regarding the appropriate time of initiation of palliative care within the course of disease but most interviewees preferred involvement of palliative care in an advanced stage. Further, interviewees stated the cyclic course of disease as a problem when deciding about involvement of palliative care. Some studies have described the difficulty of identifying the right time for commencement of palliative care for CHF patients due to the mostly unpredictable course of disease (e.g., [
16]). Practitioners are afraid of lacking skills for discussing end-of-life or of discussing this topic too soon [
15] or openly [
24]. Here, tools which can help to identify CHF patients with palliative care needs might be useful. For example, use of algorithms which scan electronic patient records and forward matching patients to palliative care were found to triple consultation rates [
33]. Further, development of criteria which facilitate identification of patients who could benefit from proactive palliative care seem fruitful [
34]. Furthermore, existing methods like the Gold Standard Framework might be useful in the prediction of CHF patients’ course of disease [
35]. Information about content and structure of palliative care could be given to patients at an early stage as this might facilitate care at a time when patients might benefit from it [
36].
As a lot of barriers focused on lack of knowledge, it seems that there is a huge need for education about CHF and palliative care for professionals, patients, as well as the public. Education regarding palliative care seems to be crucial in order to overcome barriers to palliative care not only for CHF patients [
29,
30]. In particular education of professionals regarding possibilities for palliative care of CHF patients should be intensified as patients could benefit from (early) admission to palliative care [
21,
22]. For example, Kirolos and colleagues showed that referral rates to palliative care or hospice service increased through structured training of health care professionals regarding end-of-life care [
37]. Joint case meetings for the different medical disciplines and professional groups might also be educational as exchange of knowledge can take place in an applied manner. Our study revealed that health care professionals perceived the public as not aware of the severity of the disease. They further perceived that the public strongly associated palliative care with immediate death or assisted dying. This was also found in previous studies, e.g., Japan [
38] and Ireland [
39]. Hence, educational programmes which create more knowledge and awareness about CHF and palliative care for the broader public (e.g., open-door days in clinics) are indicated.
Besides closer cooperation and more education, integration of palliative care into treatment for CHF was cited regarding future configuration, e.g., palliative care as part of hospitals or care units. Even though early involvement of palliative care into the treatment of CHF is recommended in most relevant guidelines (e.g., [
1,
32]) CHF patients receive little palliative care treatment [
9,
10]. Research suggests nursing staff could take over a pivotal role in coordinating palliative care between professionals as well as providing all relevant information to patients and relatives [
40]. In this respect a contact person trained in palliative care might be available in each institution or care unit in order to implement palliative care in non-palliative care environments.
Some limitations need to be addressed. The study consisted of a local sample owing to practicability. Most interviewed health care professionals were recruited in areas which are characterised by an elaborate palliative care infrastructure, yet barriers to palliative care for CHF patients could be identified. As the interview study served the purpose of collecting information about health care professionals’ attitudes and experiences in order to develop a questionnaire for nationwide assessment, the sample size could be considered sufficient. By using a qualitative approach this study contributes to a broader understanding of health care professionals’ attitudes regarding palliative care for CHF patients. Using an open answer format enabled exploration of important topics which might have not have been covered with fixed answers in a questionnaire. Further, the broad spectrum of professional groups involved in the treatment of care for CHF patients (nurses in different areas, physicians of different disciplines) recruited in this study is a strength.
The results of this study were used to develop a questionnaire which was administered nationwide in order to assess health care professionals’ attitudes in a broader manner. The results of the questionnaire survey [
41] as well as the interviews served as a foundation for a three-round Delphi method with experts and practitioners in the field of cardiology, palliative care, nursing, and health care administration (paper in preparation). Within this Delphi method, actual recommendations for practical implementation should be developed in order to overcome barriers for palliative care of CHF patients and to improve CHF patients’ access to palliative care [
42].
Acknowledgments
The authors would like to thank all participating interviewees.