Heart failure (HF) is a serious condition with a poor prognosis, despite improvement in medical treatment and the introduction of HF management programs.1–3 Psychosocial and existential issues are important aspects for patients experiencing HF.4 Yet, many patients are not aware of their prognosis, which can lead to anxiety and uncertainty about the course of the disease.5 In a position paper of the Heart Failure Association of the European Society of Cardiology and in the European Society of Cardiology guidelines, it is advised that prognosis should be discussed with all patients with HF, independent of their actual condition.2,6
Discussing prognosis, however, can be a challenge for healthcare providers because they need to balance being honest about the seriousness of the disease with maintaining hope in the face of a life-threatening condition.7 Discussions on prognosis most likely take place if the HF patient is deteriorating, but that might not always be the most optimal time.8 It is also suggested that such discussions take place during certain phases of treatment, for example, before implanting an implanted cardioverter/defibrillator. However, it is known that patients in general are not adequately informed about the possibility of device deactivation before implantation and when their health deteriorates.9 Communication about prognosis often depends on a good relationship between patient and healthcare provider, repeated opportunities for discussions, and questions about the prognosis from patients.10–12 The possible reasons for discussing prognosis with patients with HF can also be related to patient characteristics, such as severity of the disease and older age.
It is also possible that the characteristics of healthcare providers, for example, the level of professional experience or specific education, influence whether prognosis is discussed with the patient. Whether prognosis is actually discussed in daily practice at HF clinics in Europe and what the role of the HF nurse is in this process are unclear at this moment. In a recent survey among HF nurses about discussing prognosis and end-of-life care in Sweden and the Netherlands, we reported that most of the participating nurses believed that the physician had the main responsibility to discuss prognosis with patients with HF.12 However, 97% of the HF nurses discussed prognosis at some point with their patients.
Current data about underlying reasons for discussing prognosis or end-of-life care are often collected in surveys that focus on general attitudes and might not always optimally reflect daily practice for individual patients. Furthermore, current research mostly describes the barriers or facilitators for communication either from the perspective of a healthcare provider or from a patient perspective but rarely combines variables from both perspectives. Because communication is a process that is both influenced by characteristics of the “receiver” and the “sender,” it is important to look at data from both patient and healthcare provider at the same time. Data on both perspectives separately were published earlier by our research group.13 However, to further expand on knowledge about which variables could determine whether prognosis is discussed with patients with HF at European HF clinics, the research question of this study was “Which combined patient and nurse variables determine discussions of prognosis with patients at HF clinics in Sweden and the Netherlands?”
Data were collected by a survey of HF nurses and by registrations of individual nurse-patient communications during an HF clinic visit. The survey was conducted in HF clinics in the Netherlands (n = 91) and Sweden (n = 81). All HF clinics were approached by telephone. If they agreed to participate, all nurses of the clinic received a questionnaire by post. A total of 166 Dutch and 113 Swedish nurses participated (response rate in both countries approximately 80%). No written informed consent was needed based on advice from the medical ethical committees because return of the questionnaire provided evidence of consent. Data on HF nurses' perspectives regarding discussing prognosis and end of life in Sweden and on discussing these subjects at HF clinics in Sweden and the Netherlands have been published earlier.12,13
The nurses were first asked to complete a registration form for all patients with HF who visited the HF clinic in a predefined week, with a maximum of 10 forms. The nurses ticked box on the registration form to report which topics were discussed during the visit at the HF clinic, including prognosis and end-of-life care and why (or why not) they discussed these topics with the patient. The registration form was developed by the research group and validated by 5 experienced HF nurses. It was translated into Dutch by a certified translation service and reviewed by a person fluent in Dutch and Swedish.
After the nurses completed the registration forms for the patients, all participating nurses completed a questionnaire about communicating prognosis and end-of-life care with patients with HF, including barriers and facilitators they experience in communicating these topics. Prognosis was defined as “the expected trajectory of a disease in a specific individual.” Face validity of the nurse questionnaire was established by researchers experienced in HF care, palliative care, and professional communication. Content validity was determined using 6 interviews with nurses with clinical HF experience.12 Baseline characteristics of the nurses included age, sex, nurse education, years they worked in healthcare and in HF care, and special education or perceived need for education regarding discussing prognosis and end-of-life care. They also had to indicate how much knowledge they had on discussing prognosis with patients with HF ranging from “no knowledge” to “much knowledge.”
Age, sex, and New York Heart Association (NYHA) class of all patients were registered. Patients and nurses were included in the analysis when the question “Did you discuss prognosis with the patient during the visit?” in the patient registration form was answered. Patients were excluded when the nurses reported that prognosis was not discussed because it was already discussed in an earlier stage, for example, by the cardiologist.
The study conformed to the principles outlined in the Declaration of Helsinki. The study in Sweden was approved by the Swedish Regional Ethical Review Board (dnr 2013/244-31). After consulting the Dutch Medical Ethical Committee, no additional approval was needed in the Netherlands because no data were collected from the patient or from the patients' medical chart.
Descriptive statistics were used to characterize the study population. To assess differences in patients with whom prognosis was discussed or not, χ2 tests and Mann-Whitney U tests were used. P < .05 was considered to be statistically significant. Multivariable logistic regression analysis was performed to assess which nurse and patient characteristics were independently related to discussing prognosis. Variables with a P < .05 from the univariate analysis were inserted in the regression model by using backward methods. SPSS statistics 22 was used for all analyses.
A total of 1809 patient registration forms were completed by 279 HF nurses in Sweden and the Netherlands. A total of 1633 patients and 275 nurses met the inclusion criteria and were included in this analysis. There were 176 patients excluded because the question whether prognosis was discussed during the visit was not answered or prognosis was already discussed in an earlier stage. Four nurses were excluded because they only completed the nurse questionnaire and did not collect patient data. Because half of the nurses worked part time, with only 31% who completed a maximum of 10 patient forms, most of the nurses probably saw less than 10 patients at the HF clinic per week.
The 176 excluded patients tended to be older (73 vs 71, P = .06). There were no differences in sex and NYHA functional class between the 176 excluded patients and the other 1633 patients in the analysis.
Clinical and Demographic Variables of Patients and Heart Failure Nurses
The mean age of patients in the study population (N = 1633) was 71 ± 12 years; 38% was female, with most of the patients (43%) in NYHA functional class II (Table 1). The mean age of the HF nurses (N = 275) was 49 ± 8 years, and 90% of the nurses were female. All nurses at the HF clinics in Sweden and the Netherlands had a specialized role in HF care, although not all nurses had special education as a nurse practitioner. Only 11% of the nurses reported that they had special education in discussing prognosis, for example, bad news conversations, palliative care, psychosocial care, and ethics. Seventy percent stated that they needed extra education about discussing that topic with their patients. The nurses had worked for a mean time of 27 ± 10 years in healthcare and 10 ± 7 years in care for patients with HF (Table 2).
Patient and Nurse Characteristics Related to Discussing Prognosis
Prognosis was discussed with 42% of the patients (n = 687) during a visit at the HF clinic. Patients with whom prognosis was discussed were more often in NYHA class III or IV compared with those with whom prognosis was not discussed (48% vs 36%, P < .01). No differences in age and sex between those patients were found (Table 3).
Looking at the nurse-related variables, nurses who discussed prognosis with the patient during the visit significantly more often had special education in communicating prognosis (14% vs 9%, P < .01). Although most of the nurses (70%) reported a need for extra education in this area, this was significantly less often reported by nurses who had discussed prognosis with the patient (67% vs 73%, P < .01). No differences were found in the number of years nurses worked in healthcare or in HF care. Dutch nurses significantly more often discussed prognosis during the visit at the HF clinic compared with Swedish nurses (47% vs 34%, P < .01).
The number of topics discussed with patients with whom prognosis was discussed was significantly higher than in the other patients (8.9 vs 7.6, P < .01). It was also found that nurses who discussed sexual activity during the visit also significantly more often discussed prognosis with their patients at the same visit.
In a multivariable logistic regression analysis with both nurse- and patient-related variables, it was found that a higher NYHA class was independently related to discussing prognosis (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44–2.26). Concerning the nurse-related variables, more knowledge of HF nurses about discussing prognosis (OR, 1.71; 95% CI, 1.36–2.16) and more discussed topics during the visit at the HF clinic (OR, 1.27; 95% CI, 1.21–1.32) were significantly associated with discussing prognosis. Finally, Dutch HF nurses were more likely to discuss prognosis with the patients (OR, 1.83; 95% CI, 1.43–2.33) (Table 4).
Although there have been some studies focused on the discussions of prognosis with patients with HF,9,11,12,14 this study is the first largest study of communication about prognosis between patients with HF and HF nurses during outpatient clinic visits and to include variables from both the patients and the nurses. Prognosis was discussed with 42% of all patients included in the study during a specific visit at the HF clinic. A recent systematic review on end-of-life conversations with patients with HF reported that most patients with HF do not perceive that they had had a discussion about end of life with a healthcare professional, and only a few patients had discussed prognosis or plans for future care.9 Another study found that, although patients wanted to know their prognosis, most of the patients stated that they had not received any information about the subject.11
We have previously reported that one of the reasons for HF nurses to discuss prognosis with the patient was to emphasize the importance of adherence to treatment. Other reasons to discuss prognosis were deterioration of HF symptoms or questions from patients about their prognosis.13 Prognosis was more often discussed in patients with a higher NYHA class. Because those patients are more symptomatic and have more severe HF, nurses possibly find it more relevant or feel more comfortable discussing prognosis in those patients who are closer to the end of life.
In our study, nurses who reported more knowledge about discussing prognosis also more often discussed the topic with their patients. It seems logical to assume that having more knowledge makes it easier to discuss the topic. However, most of the nurses (70%) and 67% of the nurses who discussed prognosis with their patients also reported a need for extra education on discussing prognosis, which may reflect that having knowledge alone is not enough to have a good discussion about prognosis with the patient.
We did not survey what kind of education the HF nurses needed. It may be possible that they needed more knowledge on prognosis itself or on factors related to worse prognosis. Another possibility is that nurses need more skills in communication to discuss this sensitive topic with their patients. Previous investigators have reported that nurses who have additional education on discussing sensitive topics, for example, sexual activity, are more comfortable and active in discussing these topics with their patients.15 Communication instruments might also help them to initiate conversations about prognosis throughout the entire HF trajectory.16 Recently, in cancer care, there has been a focus on increasing patients' communications skills and their participation in discussions. One useful communication instrument that encourages patients and caregivers to initiate a conversation about prognosis is a question prompt list. This is a list of questions grouped into themes such as prognosis and end-of-life care, which patients and caregivers are encouraged to ask their clinicians, thus possibly generating a useful discussion about these topics during consultations.17
In our study, Dutch nurses more often discussed prognosis with their patients than Swedish nurses. One of the reasons that Dutch HF nurses more often discussed prognosis may be related to cultural differences. It is possible that Dutch healthcare providers are more open to discuss death and dying with patients with HF than their Swedish colleagues, although there are not much data to confirm that. A study on discussing prognosis in terminally ill patients with cancer in 7 different countries, including Sweden and the Netherlands, found the opposite, that is, that Swedish physicians were more likely to discuss prognosis compared with their colleagues in other countries.18 Discussing these subjects with terminally ill patients with cancer might be easier than discussing it with patients with HF because they have a more unpredictable course of the disease compared with patients with cancer. It is also possible that Swedish physicians are more likely to discuss prognosis than HF nurses, so Swedish nurses might not feel the need to do so. Another study on end-of-life decision making in 4 European countries (Belgium, Denmark, Sweden, and Switzerland) showed that there was lower patient involvement in end-of-life decisions in Sweden and Denmark compared with the other participating countries.19 The authors suggest that there are probably some cultural and country-specific variables that play a role in these differences.
We also found that nurses discussing prognosis during the visit at the HF clinic discussed significantly more other topics, such as sexual activity, compared with those who did not discuss prognosis. This seems a bit strange because prognosis can be a sensitive topic that often requires time to discuss properly. When there are many other topics that are discussed during the same visit, one might wonder in what way prognosis was discussed with the patient. It is possible that HF nurses only mention a particular topic but do not discuss it extensively with the patient. Prognosis, for example, could be especially discussed in the light of the importance of optimal treatment and patient adherence or that, indeed during the educational part of the visit, it was a logical step to discuss sensitive topics such as prognosis. Another explanation is that nurses who focus more on education and communication may be less likely to avoid difficult topics of conversations such as sex and death. In general, visits at the HF clinic take more time than visits at the cardiologist; therefore, it is possible that more and also sensitive topics are discussed during 1 visit.
To initiate and facilitate discussion on prognosis with patients with HF, the topic needs to be discussed in all or at least several stages of the HF trajectory. These conversations are essential to understand future expectations of the patients and his/her family and to be able to formulate mutual goals of care.
Because we found that variables related to the “receiver” and the “sender” are important, it is important that interventions to improve communication on prognosis take that into account. Previous interventions developed to facilitate communication and interactions between patients and healthcare professionals had primarily been designed for professionals. More recently, there is also a focus on increasing patients' communication skills and participation in discussions.20 However, it is not known what the most effective and appropriate communication strategies are that could have a positive effect on both the professional and the patient and caregiver.
An important study limitation is that we only asked “Did you discuss prognosis with the patient during the visit,” with possible answers of “yes” or “no.” Although we defined what was meant by “prognosis” in this study, nurses might have their own opinion about the definition; therefore, it remains unclear in what way prognosis actually was discussed during the visit. Because there were no validated instruments available for data collection, we developed the instruments used in this study and established content validity. However, we are aware that further validation of the instruments is needed. Finally, the data were self-reported, and we do not know what conversation about prognosis actually took place during the HF clinic visits. Therefore, it would have strengthened and made the data collection more robust if we had also included observational data collection for data triangulation and validation of the self-reported data.
Whether HF nurses discuss prognosis with their patients is related to the characteristics of both patients and nurses. Future interventions to improve communications about prognosis should have a broad approach and include education and support to patients, families, and healthcare providers.
What's New and Important
- This is the first study to determine variables related to communication on prognosis with patients with HF including factors from both patients and healthcare providers.
- Prognosis was more often discussed with patients in a higher NYHA functional class.
- Nurses with more knowledge on discussing prognosis more often discussed the topic with their patients, although most of the nurses (70%) also reported a need for education on discussing prognosis.
The authors thank all heart failure nurses who participated in the study.
1. Jhund PS, Macintyre K, Simpson CR, et al. Long-term trends in first hospitalization for heart failure
and subsequent survival between 1986 and 2003: a population study of 5.1 million people. Circulation
2. McMurray JJ, Adamopoulos S, Anker SD, et al. ESC HF guidelines 2012 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure
2012: The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure
2012 of the European Society of Cardiology. Developed in collaboration with the Heart Failure
Association (HFA) of the ESC. Eur Heart J
3. Wakefield BJ, Boren SA, Groves PS, Conn VS. Heart failure
care management programs: a review of study interventions and meta-analysis of outcomes. J Cardiovasc Nurs
4. Leeming A, Murray SA, Kendall M. The impact of advanced heart failure
on social, psychological and existential aspects and personhood. Eur J Cardiovasc Nurs
5. Strömberg A, Jaarsma T. Thoughts about death and perceived health status in elderly patients with heart failure
. Eur J Heart Fail
6. Jaarsma T, Beattie JM, Ryder M, et al. Advanced Heart Failure
Study Group of the HFA of the ESC. Palliative care
in heart failure
: a position statement from the palliative care
workshop of the Heart Failure
Association of the European Society of Cardiology. Eur J Heart Fail
7. Glogowska M, Simmonds R, McLachlan S, et al. Managing patients with heart failure
: a qualitative study of multidisciplinary teams with specialist heart failure
nurses. Ann Fam Med
8. Dunlay SM, Foxen JL, Cole T, et al. A survey of clinician attitudes and self-reported practices regarding end-of-life care
in heart failure
. Palliat Med
9. Hil L, McIlfatrick S, Taylor BJ, et al. Implantable cardioverter defibrillator (ICD) deactivation discussions: reality versus recommendations. Eur J Cardiovasc Nurs
10. Barclay S, Momen N, Case-Upton S, Kuhn I, Smith E. End-of-life care
conversations with heart failure
patients: a systematic literature review and narrative synthesis. Br J Gen Pract
11. Momen NC, Barclay SI. Addressing “the elephant on the table”: barriers to end of life care conversations in heart failure
—a literature review and narrative synthesis. Curr Opin Support Palliat Care
12. Hjelmfors L, Strömberg A, Friedrichsen M, Mårtensson J, Jaarsma T. Communicating prognosis
and end-of-life care
to heart failure
patients: a survey of heart failure
nurses' perspectives. Eur J Cardiovasc Nurs
13. Hjelmfors L, van der Wal MHL, Friedrichsen M, Mårtensson J, Strömberg A, Jaarsma T. Patient-nurse communication about prognosis
and end-of-life care
. J Palliat Med
14. Rodriguez KL, Appelt CJ, Switzer GE, Sonel AF, Arnold RM. “They diagnosed bad heart”: a qualitative exploration of patients' knowledge about and experiences with heart failure
. Heart Lung
15. Jaarsma T, Strömberg A, Fridlund B, et al. Sexual counselling of cardiac patients: nurses' perception of practice, responsibility and confidence. Eur J Cardiovasc Nurs
16. Steel A, Bakhai A. Proposal for routine use of mortality risk prediction tools to promote early end of life planning in heart failure
patients and facilitate integrated care. Int J Cardiol
17. Walczak A, Butow PN, Clayton JM, et al. Discussing prognosis
and end-of-life care
in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers. BMJ Open
18. Voorhees J, Rietjens J, Onwuteaka-Philipsen B, et al. Discussing prognosis
with terminally ill cancer patients and relatives: a survey of physicians' intentions in seven countries. Patient Educ Couns
19. Cohen J, Bilsen J, EURELD Consortium. End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: does place of death make a difference? J Epidemiol Community Health
20. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage
Keywords:Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved
end-of-life care; heart failure; nursing; palliative care; prognosis