Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care

Heart Failure (HF) is a life threatening illness, often with a poor prognosis [1]. The HF trajectory is unique for each individual person, and it may include recurrent, unpredictable exacerbations, including decreased functional status [2–5]. Death from HF can be sudden, due to an ischemic event or electric instability of the heart, or it can be slow, due to episodes of decompensation or progressive organ failure [6]. Patients with HF also often have several comorbidities that can cause death [7]. Guidelines recommend health care professionals to have an open communication with patients and their families about the HF trajectory, including discussing their preferences for future care, acknowleding the risk of a sudden death, and the possibility of deactivation of implantable defibrillators in the end-of-life [8, 9]. A lack of insight in the HF trajectory, including disease progression and functional decline, can increase anxiety and uncertainty in patients and family members which may affect quality of life and also increase use of health care resources [10]. Additionally, if the HF trajectory is not adequately discussed, issues around end-of-life care tend to be addressed too late, possibly resulting in an unsatisfactory end-of-life care for both patients and families [11]. There seems to be a reluctance to talk about death and dying in clinical HF practice, and conversations focus mostly on disease management and less on preferences and goals of care [12]. Health care professionals are often hesitant to have these conversations as they are afraid of taking away hope and cause anxiety in patients and their families [12, 13].

However, patients with HF and their families would often welcome conversations about the HF trajectory and end-of-life care, but do not always know how to initiate the discussion with health care professionals [12]. Several studies [12, 14–17] have described the needs for improved communication about the HF trajectory and end-of-life care in HF care. However, there is limited knowledge on the most appropriate communication strategies that meet the specific needs of patients with HF, their families and the health care professionals. Interventions to improve communication should be developed in accordance with the future users’ needs and preferences to increase their usefulness. During the last decades, methods in which patients, family members and health care professionals are involved in the design of health care services have become more common [18]. Examples of such methods are Experienced-based design, Co-design and experienced-based co-design, in which staff and patients (or other service users) co-design services and/or care pathways, together in partnership [19]. A core methodological approach in these methods is involving the experiences of future users in the design process [19], focusing on both understanding and improving a person’s experiences of a product/service as well as the product/service itself [20, 21]. Key benefits of co-design methods in development studies include the possibility to engage and empower patients, family members, and health care professionals to become active participants in the development of services that they will use in the future [19]. The aim of this paper was to describe the development of an intervention that is developed to improve communication about the HF trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention.

To our knowledge, this is the first study to use a co-design method and invite the future users in the development of an intervention aimed to improve communication about the HF trajectory and end-of-life care in HF care, and test the acceptability and limited efficacy of the intervention. In co-design, the ‘co’ is pivotal, emphasizing a collaborative effort by patients, families, professionals and the researchers facilitating the process [28]. The co-design method made it possible for patients, their families, and health care professionals to share their experiences. Through a partnership with the researchers, the patients and their families contributed to the design and development of the intervention, which ensured that the intervention was based on their needs [20]. In the co-design process, two ideas were suggested and developed into prototypes, a QPL and a communication course that formed the intervention. To evaluate if the intervention could be useful in clinical practice, the two areas of feasibility that were found most important at this stage of the study were tested; acceptability and limited efficacy [22]. The results show that the course was well received by all the nurses who finalized the course. The QPL was tested by nurses in clinical practice with positive results and was reported to be a valuable tool in communication, helping the patients and the family members to ask questions about the HF trajectory and end-of-life care. Similar results have been found in a recent extensive literature review on Question Prompt Lists in cancer care, reporting that most patients find using a QPL useful to frame questions and enhance the consultation [29]. A study from 2001 [30] described the use of a checklist with questions to improve patient education in cardiology and in the evaluation of the long-term efficacy of the checklist, it was concluded that the it could be a useful tool for preparing the patient for the visit to the cardiologist [31]. Our QPL showed similar results, but it is different as it is supposed to be used in discussions between patients, their families and several cardiac professionals, not only by a cardiologist in a doctor-patient communication.

The participants’ perceived knowledge, confidence and skills to discuss the HF trajectory and end-of-life care in HF care, increased after the course, with the biggest changes concerning issues around ICD/CRT. This is not surprising as these are areas that are difficult to discuss with patients and family members [32], and health care professionals might have little knowledge about them. The participants reported decreased knowledge, confidence and skills in two questions that concerned who the patient or the patient’s family can talk to if they feel a need for help and support. This, however, does not necessarily mean that the participants’ knowledge, confidence and skills actually decreased. Rather, during the course, they might have become more aware of the fact that there are more aspects related to certain topics then they originally thought. The participants might have become aware of their lack of competence, which can be an important first step towards gaining the needed knowledge, confidence and skills to discuss these topics [33]. This is in line with the adult learning principles that aim to facilitate a problem-solving process for the learning individual by identifying a lack of knowledge in order to gain new knowledge [34].

We chose to assess not only the participants’ knowledge, but also their confidence and skills to discuss the HF trajectory and end-of-life care, as our previous studies found that even if a person has knowledge to discuss those topics, it does not mean that they have the confidence and skills to actually take on the conversation [13].

To further improve the intervention, other areas need to be tested, such as implementation and demand [22]. These areas of feasibility can be explored in a later phase.

There are some important limitations to consider in this study. First, although the results of the testing are promising, it has to be recognised that due to the limited number of participants and the lack of statistical analyses, more information is needed to draw definite conclusions about the efficacy of the course. Although we are further developing the materials, we find it important to share our results in this stage so readers can be inspired to use or further develop the intervention to improve their care to HF patients. Secondly, input from family members was limited as only two family members participated in the development of the intervention. Thirdly, as we only send an evaluation form to those who completed the final task, we missed specific data on the satisfaction from the three physicians, who did not complete task 3, which limits the possibility to state anything about the physicians’ perceptions of the intervention, and also raises the questions if the final task was useful for training physicians. The lack of physicians must also be seen as limitation of the generalizability of the intervention to non-nurse professionals. Preferably, physicians from both general care and cardiology should have participated in all parts of the study in order for it to be more effective and strengthen the validity.

In addition, the data were self-reported and not based on direct observations of the participants’ knowledge, confidence and skills, and, due to the small sample size, we could not calculate for any significate changes pre- and post the intervention, but only look at positive trends in the data. It is also important to consider that no men participated in the testing of the intervention and that there might be a potential selection bias if only professionals that were already motivated to learn more about communication about the HF trajectory and end-of-life care, are represented in the sample. Most participants attending the course already had some knowledge, confidence and skills to communicate about the HF trajectory and end-of-life care. At the same time, the majority of the participants also reported having learned more during the course.

To evaluate knowledge, confidence and skills related to the QPL, a questionnaire was developed especially for this study instead of using a general one. However, the results from the questionnaire need to be interpreted with caution, as the questionnaire was only psychometrically tested in a limited extent.

Additionally, it also should be noted that the patients involved in the development of the intervention were not the ones with the most advanced HF; hence this intervention was developed with HF patients at earlier stages of the illness and their ideas for effective interventions may differ from those with more advanced HF.

One important advantage in the co-design process was the diverse sample of participants that participated in both the development and the testing of the intervention. This strengthens our findings and entails that the intervention is based on the needs of future users, which is crucial in order for the it to be useful [35]. Many patients, families and health care professionals are interested in taking part in development studies as they want to see a change and improvement in practice [19]. In this study, some participants contributed more and were more creative than others, but everybody showed an interest in the co-design process and contributed to some extent. The researchers took on a facilitator’s role in the design process, bringing knowledge and expertise from their own professional backgrounds, thus guiding and inspiring the design process [21].

We have developed and evaluated an intervention containg a QPL for patients and family members and a communication course for cardiac health care professionals using a co-design approach including those groups representing the future users in the process. This intervention can be a first step towards improving communication about the HF trajectory and end-of-life care in HF care. The intervention has a dual approach to communication, where the QPL can help patients and family members to initiate discussions about the HF trajectory and end-of-life care, whereas the communication course can help professionals to gain the knowledge, confidence and skills required to discuss the questions raised by patients and their families. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.