“If You Look Closely,You Have Everything …”: Ideas of a Good Life Among Middle-Aged Individuals With Heart Disease: An Interpretative Phenomenological Analysis

Abstract

Heart disease at an early or middle age is critical, especially when accompanied by an acute cardiac event with or without sudden cardiac arrest (SCA). Owing to this situation, patients describe changes in their health-related quality of life as well as in their future plans and goals. This study examined changes in ideas of a good life due to heart disease treated in an acute hospital. In our study, 16 patients aged 30–59 years were included. Among them, four had SCA, seven myocardial infarction, and five other serious cardiac conditions, such as cardiac arrhythmia. Advanced chronic heart failure was noted in five, and four had implantable cardioverter defibrillators. Phenomenological semi-structured interviews of 50–100 min each were conducted with a purposive sample and analyzed using interpretative phenomenological analysis. The ideas of a good life and changes in future lifestyle following a serious heart disease were reported by patients. These experiences were summarized into five superordinate themes: “My bodily trust is gone,” “Simply living a modest life,” “Actively shaping my life again,” “Being more in contact with relevant people,” and “Grateful for the gift of my new life.” Living a more modest life and actively shaping life again are two new aspects of the ideas of a good life. Further studies should be conducted in cardiac patients with lower disease burden and young patients with congenital heart disease, with a focus on sex-specific issues.

Introduction

In 2019, cardiovascular diseases (CVDs) such as myocardial infarction (MI) and cerebral apoplexy accounted for 32% of deaths, making them the leading cause of death globally (World Health Organization, 2021). Annually, 17.9 million people die because of CVD, and 85% of these deaths are due to heart attack and stroke (World Health Organization, 2021). In 2021, CVD was the most common cause of death in Europe, causing 45% of deaths in females and 39% in males (Timmis et al., 2022). CVD also has a financial and economic burden: more than 200 billion euros are incurred annually in the European Union (Timmis et al., 2022). Heart disorders form an important type of CVDs and include coronary artery disease (CAD), cardiac arrhythmia (CArr), and chronic heart failure (CHF). Heart diseases can differ based on whether they are congenital or acquired. Congenital heart diseases exist from birth, whereas risk factors such as tobacco use and unhealthy diet can lead to acquired heart diseases, including CAD and MI. CAD combined with MI is also the most common cause of out-of-hospital cardiac arrest (OHCA) (Engdahl et al., 2002). In the most developed countries, only 11% of the patients survive after experiencing an OHCA due to MI or CArr (e.g., Gräsner et al., 2011).

The heart is historically considered the seat of the soul and the “motor of life.” Life is threatened in the event of an acute heart disease. A recent qualitative research shows that serious cardiac diseases, such as MI, lead to bodily insecurity (Haydon et al., 2017; Johansson et al., 2003; Merritt et al., 2017). Younger patients with MI are increasingly experiencing fragility of life (Andersson et al., 2013); especially, young men with MI are experiencing physical weakness (Allison & Campbell, 2009; Merritt et al., 2017). MI is considered a “wake-up call” (Merritt et al., 2017), providing patients with a new perception of life. Several studies have been conducted in patients with sudden cardiac arrest (SCA) or OHCA. The reason might be that OHCA is experienced as a dramatic escalation of a serious cardiac disease with an acute life threat and total dependency on resuscitation. As described above, MI and other cardiac diseases, such as CArr, could be the cause of OHCA. Two meta-syntheses described the changes in life among patients with OHCA (Aristidou et al., 2018; Haydon et al., 2017). On one hand, Haydon et al. (2017) described a disruption in the continuum of time with an emotional chaos and the fear of an unknown future. Patients were exposed to their own mortality, and their changed body created insecurity and anxiety. On the other hand, their confrontation with death showed how fortunate they were to survive, and they expressed gratitude. In a meta-ethnography involving patients with OHCA, Aristidou et al. (2018) found a need to redefine oneself because of the incomprehensibility of existential interruptions. The realization of death leads to a greater awareness of the moment and a focus on the present. In most qualitative studies involving patients with OHCA, these two opposite experiences have been described (Bremer et al., 2009; Forslund et al., 2014; Ketilsdottir et al., 2014; Palacios-Ceña et al., 2011; Whitehead et al., 2020). On one hand there is a biographical disruption with a fractioning between the past and future, with the experience of an unreliable body. On the other hand, there is a deep gratitude for life because of the experience of finiteness.

In positive psychology, experiencing post-traumatic growth (PTG) is a phenomenon that is sometimes described as occurring after a limit situation of a traumatic event, such as an acute threat to life (Tedeschi & Calhoun, 1995). People experience development in their awareness, priorities in life, and personality due to finiteness. Although reports on PTG may include illusionary aspects (Zoellner & Maercker, 2006), this concept offers a useful addition to the predominantly pathological approach in patients with heart disease (Broschmann & Herrmann-Lingen, 2023). This is important because it highlights the difference between health-related quality of life (HRQoL) and a good life, a concept that originates from philosophy (Aristotle, 2008; Steinfath, 2024). Physical well-being, mental health, and HRQoL may suffer after an incisive biographical experience, such as a potentially lethal heart disease. However, although this perspective addresses immediate life situations, chronic illnesses necessitate the consideration of longer periods. Furthermore, a good life does not require happiness if it is meaningful for a person. This means that, in contrast to HRQoL, the question of a good life could be as follows: how might individuals want to live and shape their lives, so that they can affirm it from an overarching perspective? We propose that the concept of a good life represents a holistic perspective for contemplating lifestyle and life goals after a disruptive event. These questions about a good life are often connected to the temporal aspects of human existence, such as mortality, finiteness, and anticipation and planning for the future. There seem to be many similarities among cardiac conditions and diseases, such as OHCA, MI without OHCA, and living with an implantable cardioverter defibrillator (ICD) owing to severe CArr or advanced CHF. Despite the bright research status on the lived experiences of MI and OHCA, qualitative studies that investigate the holistic structure of experienced changes in ideas of a good life after a biographical disruption caused by a serious heart disease are lacking.

Study Focus and Aims

Based on the above, the research question was: what changes in ideas of a good life are reported in patients with heart disease among middle-aged patients (30–59 years) prematurely affected by the disease and treated in an acute hospital setting owing to the symptom burden?

Methods

Sampling Approach

The local ethics committee approved this study. All participants provided written informed consent before enrolling in the study. The study protocol was drafted in accordance with the Declaration of Helsinki and was approved by the ethics committee. The study was registered at the German Trials Register under project number DRKS00028096. Study participants were recruited at a university hospital by physicians or psychologists during their hospital stay between March 1 and December 31, 2023. The inclusion criteria were middle-aged cardiac patients (30–59 years) who were being treated in an acute cardiological or psychocardiological setting because of the symptom burden of the disease. We included any type and genesis of cardiac disease, for example, patients with CAD with a history of MI and/or coronary intervention or cardiac surgery, symptomatic CHF (New York Heart Association II–IV), or CArr with any type and genesis. Patients with inadequate German language skills, pronounced cognitive impairment, or severe mental illness (e.g., addiction, schizophrenia, or severe depression) were excluded. As some mental illnesses are common in cardiac patients (major depression, anxiety disorders, and post-traumatic stress disorder), their physical experiences combined with severe mental disorders could be overlaid by mental symptoms. Posters and brochures containing detailed information regarding the objectives of the study and eligibility of participants were used as a recruitment strategy and distributed in the clinical setting. Furthermore, we informed the hospital wards (from cardiological and psychocardiological settings) about the project and inclusion criteria. In most cases, ward physicians and psychologists provided a brochure containing the study details to suitable patients. Upon the patients showing interest to participate in the study, the research team contacted them or the ward team to make an appointment for the interview.

Procedure and Interview

The interviews were conducted by the interviewer in separate rooms. Phenomenological interviews were conducted with each participant and lasted between 50 and 100 min. The interviews were audio recorded and then transcribed verbatim with the support of a writing service for evaluation. Phenomenological interviews were based on a previously developed semi-structured interview guide (Appendix I). The interview guide was developed through brainstorming about themes, a discussion and reduction process within the research team, and a pilot test. To enable trust in the relationship with the participants and obtain good rapport and relevant information about lived experiences, the interview schedule was made as open and flexible as possible. Opportunities were provided to the participants to speak about the issues that were important to them and tell their stories. The interviewer tried to keep the questions broad and open-ended and as sensitive and spontaneous as possible; he covered the topics (experience with heart disease and changes in ideas of a good life) tangentially, rather than confrontationally. The interviews were conducted with a focus on relevant topics in response to the statements from patients. They were opened with general questions about the heart disease (“Would you like to start by telling us about your heart disease?” and “How does heart disease influence your life?”); as the interview progressed, increasingly specific questions were asked with respect to ideas of a good life (“What is important to you in your life?” and “What has changed owing to the illness?”). Finally, the respondents were explicitly asked about ideas of a good life (“What does a good life mean to you?”). To give the participants the opportunity to continue speaking, interviewers used interventions like “Tell me more about this,” “Can you give me an example?”, or “Can you explain a little more on what you mean?” Trustworthiness was achieved by asking concrete questions and clarifying the experiences.

Analytic Approach

Interpretative phenomenological analysis (IPA) was chosen as the qualitative analytical method. This inductive qualitative methodology enables an understanding of individuals’ lived experiences and is well-established in the field of health psychology (Brocki & Wearden, 2006). IPA studies are available, for example, on fatigue syndromes (Arroll & Senior, 2008), bone marrow transplantation (Holmes et al., 1997), or chronic back pain (Smith & Osborn, 2007). The IPA has methodological origins in phenomenological, hermeneutic, and ideographic research traditions (Smith et al., 2022). Phenomenology is a philosophical movement going back to the beginning of the 20th century when Husserl tried to investigate the “things themselves.” Husserl believed that implicit phenomena in everyday life are obscured by prejudices arising from idealistic and materialistic thinking. Bracketing one’s own prejudices can be a method for investigating everyday phenomena. Phenomenologists, such as Merleau-Ponty and Sartre, followed Husserl, especially in investigating the experiences of the lived body in contrast to the material body from the natural sciences and medicine perspective. Phenomenology tries to get in contact with the phenomena empathically and strives for an “insider perspective.” In contrast, hermeneutic philosophy is a science which has its origins in text interpretation and was developed by philosophers such as Gadamer and Ricœur. In contrast to the phenomenological approach, the hermeneutical scope attempts to understand a text or another person. Interpretation is a process in which human beings are engaged all the time, and sometimes prejudices might help people to get in contact with another person or text. Therefore, there is no such thing as an objective phenomenon, but there is the possibility of reflecting on personal assumptions and prejudices from an “outside perspective.” IPA is an in-depth analysis, which investigates how people make sense of lived experiences and is characterized by both an empathic phenomenological “insider” and an interpretative-hermeneutic “outsider” perspective (Smith et al., 2022). IPA seeks to understand the unique elements of an individual’s experiences before generalizing them. The ideographic focus here is on determining the attribution of meaning and personal horizon of the meaning of experiences.

A 29-year-old female psychologist (L.N.) and a 36-year-old male physician (D.B.) were equally involved in the data collection and analysis at all times. Although both authors have previous experience in qualitative research, the physician has been working in the fields of psychiatry and psychosomatics for 8 years. The specific sociocultural backgrounds of both raters were reflected and recorded in advance (including gender, young age, heterosexuality, educational background, white ethnicity, and religiosity). After the interviews, participants’ initial impressions and relevant passages from the interviews were recorded on a reflection sheet. Each interview was reviewed twice and commented on how the interview was conducted and interpretation of the topics was discussed. The interviews were then transcribed line by line with the support of a writing team according to the transcription rules of Dresing and Pehl (2010). All identifying information was pseudonymized (including names, cities, and professions). After the interviews were transcribed, each researcher listened to them and read the transcripts. Transcripts were transferred to the MAXQDA software and re-analyzed. During the second reading, initial exploratory comments, such as linguistic or conceptual, were made. Each researcher coded primary themes separately. In weekly meetings, themes were discussed, often with the input from a third person, and a concerted decision was made. The next step was to separate word-files connecting themes among participants and find superordinate and subordinate themes based on similarities and differences. At this level, weekly meetings took place within the research team to discuss themes that were more appropriate for the material. Superordinate themes were identified and condensed into relevant themes for all the participants. Finally, in the sense of a hermeneutic circle, themes were tested on the data material based on convergence and divergence.

Results

As purposive sampling strategy was adopted, there were no dropouts due to inclusion criteria or patient decisions. Sixteen participants aged 30–59 years were recruited. Data saturation was reached after 13 interviews; the last three participants had the function of controlling, so that no additional themes emerged from the material. Of the 16 participants, 10 were male and 6 were female. Overall, 10 participants were married, 6 were not, 11 had children, and 5 did not have children. The median age was 49 years, with three participants aged 30–39, two aged 40–49, and 11 aged 50–59 years. Among the 16 participants, four had SCA, seven MI, and five other severe cardiac conditions. Additionally, five participants had comorbid CHF and four had ICD. Eleven participants had mental disorders, such as major depressive disorders, post-traumatic stress disorder, or anxiety disorders, and five had no mental illness. A broad professional and social spectrum among the participants could be found, ranging from academic professions to craftsmen to persons who retired early. Three participants had an academic background, and 13 had no academic background. Five recurring superordinate themes were found in the interviews: “My bodily trust is gone,” “Simply living a modest life,” “Actively shaping my life again,” “Being more in contact with relevant people,” and “Grateful for the gift of my new life.” All quotes were translated from German to English and closely related to their content. In some cases, translation of the original quote was difficult, and different alternatives were discussed by the research team. It is indicated in the following section wherein the translation resulted in changes in content:

My Bodily Trust Is Gone

All participants described a loss of bodily trust and sense of security. The first occurrence of heart disease led them to experience a serious loss of control. The “motor of life” no longer works (Sandra, 55 years, CAD and history of MI). Thorsten (59 years), who survived a heart attack, described the inner threat posed by his damaged heart and the desire to control and monitor his body better:

That is quite extreme … But when something hurts you for weeks, and you do not know why? Because I cannot look into it. It is just there. And I noticed it every day until I realized that not every twinge and everything in there has something to do with my heart.

Georg (52 years), a patient with recurrent CArr after OHCA, expressed his physical insecurity and self-observation in a particularly impressive way:

Yes, I usually notice that my heart rate increases. I then have a restless feeling inside me; it bubbles irregularly up here. Then, you start listening to yourself increasingly and then sometimes it spasms, and that is just, it is kind of hard to describe. It’s so oppressive, so frightening, man. I have sometimes said that when my foot hurts, it just hurts … But I still have another one and I can still walk, but if my heart does not want to anymore and it cramps and maybe stops beating, then it is over.

Johannes (30 years) first fell ill with CArr in his late 20s. At his workplace, he had suffered an OHCA and had to be resuscitated.

I have never been helpless my whole life, that is the worst thing for me … I was helpless, I could not do anything and yes, I was just helpless, I just put up with everything and hoped it would get better (…) and then you get into a situation where you really have to rely completely on others and then you have to somehow entrust your life to them.

The repetition of the word “helpless” illustrates how Johannes still could not fully come to terms with the dramatic situation. Physical loss of control means that others contribute as helpers. The loss of bodily trust is also accompanied by a loss of strength and rapid exhaustion, which half of the patients reported. A former competitive athlete was already exhausted after his morning shower or was unable to climb more than three stairs. A construction worker who had previously carried 100 kg of sacks consumed drinks from glasses that appeared as heavy. In the case of a former tour guide, taking a walk or train journey must be planned in advance. Therefore, physical strength must be well managed. In a majority of participants, physical experiences of alienation were also reported, as the illness progressed—the body and heart, in particular, became inscrutable and uncontrollable. Instead of being perceived as a physical and mental unit, the body becomes a separate and uncontrollable entity. The participants try to observe and monitor their bodies closely as “their antennae have become sharper,” as Thorsten (59 years) puts it. This is also the case with the desire to regain trust and security of the body.

Simply Living a Modest Life

In the face of a near-death experience and profound physical insecurity, the standards for future life shifted for all participants. Earlier projects could no longer be continued and appeared pointless. Roles that could only be fulfilled with good physical health were temporarily or permanently abandoned. Professional and private demands were either reduced or moderated. In many patients with heart disease, this was the first and foremost question regarding pure survival. Klaus (54 years) was a sportsperson before the first occurrence of congenital cardiac arrhythmia. After encountering repeated cardiac events with OHCA, he is glad for every day he gets to experience—even without highlights. Klaus describes his changed view of life as:

To be honest, I do not want to die. I have three children and grandchildren. Perhaps, I have a distorted view of my age. I still feel young, not fit, but young. I would like to live for another 20/30 years at this level, where I am now. We live in [Southern Germany] … But I cannot really use the mountains anymore. I can, but very slowly … So, life is now running with the handbrake on.

Although Klaus had previously participated in many competitions and was physically very active, the heart disease changed his perspective by 180 degrees. The repeated near-death experience through resuscitation has cast a shadow, and the only goal now is to preserve the status quo. Eddy (52 years), a patient with CAD and MI without OHCA and CHF, described his situation with heart disease in a similar way:

Well, now that I am working towards early retirement … I want to experience the last few years for myself. And I do not have to work under time pressure or travel and dance to other peoples’ tunes … I do not really have any goal at the moment. As far as I am concerned, I have already been through a lot, and I am quite happy at the moment. If it stayed like this now, if I could live my life a bit longer, without stress, without obligations, then I would be satisfied.

However, not all participants welcomed the supposedly less demanding view of things. A quarter of the participants struggled with this and had to work on being satisfied with simple things. Sarah (37 years), a patient with CArr, reflected:

I have to learn to accept how it is … That I can no longer do what I used to enjoy doing to this extent … That I now know that I have set my priorities differently. And that I now know how to deal with it. Therefore, I have accepted that 100 percent is no longer possible. Yes, I put my focus on other things … I would say I had to tell myself three times before I felt it.

In addition to the desire to live longer, the participants wished to continue living more easily and without worries, despite heart disease, which is experienced as a physical and psychological burden. Klaus addressed the loss of lightheartedness in the following words:

… lightheartedness is gone. The cheerfulness. It is always the famous sword of the Damocles that hangs over you. Where you never know what your heart will do in the near future or what Shenanigans it will get up to … When we went to Lake Garda, for example, where the children could go climbing or mountain biking, I always stayed at home … And when they went climbing, I went with them. But I was passive and just watched the children.

The description of cardiac behavior appears to be euphemistic here (“doing shenanigans”). This may reflect the patient’s need to keep frustration under control by maintaining a humorous distance. In contrast, the image of the “sword of Damocles” conveys the underlying experience of impending doom. Ultimately, all participants wish to return to their lives that they had before the illness and function “normally” again. This also means that the heart and body are no longer experienced as threats. Instead, they recede to the background of the experience.

Actively Shaping My Life Again

Most participants were not only burdened by their serious heart conditions, but they also felt passive, helpless, and powerless. Initially, this was the case during an acute heart event when the participants felt absolutely dependent on others. However, even in the phase with chronic heart disease, the participants not only felt dependent on their own bodies, devices, and medication but also on other people and the healthcare system. Moreover, due to the illness, patients lost everyday structures that previously enabled an active life and self-efficacy. Frank (45 years) described the experience of passiveness as a patient with CAD and history of MI:

You are somewhere doing nothing … it is a strange feeling. It is a feeling of helplessness because you are sitting there; you are not reacting to anything. Anyone can do what they want. However, no one knows what is happening with you. I used to be an active PERSON and noticed the environment around me for what it was. That is partly missing now.

This statement can be interpreted on various levels: on the surface, Frank is talking about how, as a result of heart disease, he has lost the active temper that characterizes him as a person. In the original German transcript, Frank uses the word “Mensch,” which can best be translated as “human.” Although “Mensch/human” and “Person/person” are often used synonymously in everyday German, the superficial meaning of Frank’s statement is better captured by the English term “person.” However, with reference to the term “Mensch” or “human,” one may assume that the patient feels less human owing to heart disease. At a deeper level, Frank only expresses his regret very carefully by adding the word “partly.” For his future life, he also expresses a clear wish:

Being able to actively participate in life again, being able to go to work. Yes, and to look ahead POSITIVELY, not just from one day to the next, but also to be able to plan … Quality of life is actually being able to do what I did before. Not to the same extent, but at least in the direction of being able to cycle for longer, to go for walks somewhere for longer … That’s quality of life for me.

Frank points out that narrowing the future horizon makes it difficult to plan, and thus acts in a self-determined way. For Barbara (57 years), a patient with vasospastic angina and CAD, the loss of spontaneity associated with the heart disease restricts her freedom:

Yes, I cannot always decide freely; one day, I work less, have less money, and I am ill …, have to plan everything. I am not free. … For me, a good life means that I can freely decide what I want to do… That I have the opportunity to do exactly what I want … I want to be free to decide that I want to eat ice cream … I want to be healthy enough to go on a boat trip or something. I want to be free to decide what I want.

The scope for freedom is reduced not only because of material restrictions caused by heart disease but also due to reduced physical capacity. For gardener Peter (40 years), heart disease—heart valve insufficiency and CAD—also means that he can no longer work physically:

The only thing that really bothers me now is my limited ability to act … We have been here for a week now, it is a crisp minus ten degrees and that is the perfect weather for making wood outside … But, of course I cannot. Yes, and that is a restriction for me. Or going to the city in the evening with friends to the Christmas market or having a glass of mulled wine at the Christmas market.

The goal of all the participants was to regain their ability to act and make decisions. Due to the profound loss of autonomy both in acute situations and as a result of chronic illnesses, self-determination becomes the most important goal, which can only be regained with great effort and step-by-step progress.

Being More in Contact With Relevant People

Interpersonal relationships became more intense and thus more meaningful in the lives of all participants. Family members and partners are particularly supportive. According to Frank (45 years), his family is the linchpin that helps him cope with his heart disease (CAD, post-MI):

At the moment, it is my family that gives me stability. That is my great support. I do not know what would happen if it was not for my family.

Family is a stabilizing fixture in life, but for many participants, their family is also essential for moving on. For Sarah (37 years), a mother for whom the family plays a central role, an increase in intensive interpersonal relationships is at the heart of her future lifestyle in view of her heart condition:

Now, a good life for me is spending time with people that are close to my heart. That has already been relatively sorted. So I have FEWER friends now, but closer ones … Before my heart disease my life goals were: children, a home, a horse. So I think it would have been more material things.

Interestingly, she uses in this context the meaningful expression “close to my heart.” Although there are fewer interpersonal relationships similar to Sarah, the others are more intense. On one hand, this is done selectively by the participants; on the other hand, relationships are also strained by heart diseases. Participants withdraw more because of limited possibilities and aversive feelings such as fear and shame, whereas former friends and acquaintances are unsettled and avoid contact. Paula (59 years), a patient with CAD and a history of MI, had the following complains:

I have actually withdrawn even more. I do not know what to talk about with my friends. Thus, social withdrawal was strong. (tearful) I also mean, when people come with good advice … it is not that I am saying I MISS that, but I think it is easier when you have such a serious illness, when you are caught up in some field or in some thing. So, if you now have a completely healthy partner who takes care of you and also initiates THINGS.

Paula does not feel that other people take her seriously or understand her. Therefore, she prefers to remain alone. However, withdrawal from family relationships is also disadvantageous. For Frank, for example, it also led to greater dependence on family members and a reversal of roles:

YES, the family has become overprotective. So, for protection, how should I put it … The family’s need to protect me is sometimes unbearable. I have the feeling. I want to do something, and then they just say, “You cannot do that.” Well, I cannot do a lot of things that I used to do either. However, it is still unclear how one becomes more dependent on someone, especially on children. You are actually there for the children and not the children for me at that age … That is stressful when the children have to do more for you than you are there for them at the moment.

In this case, being supported by his children led to a break in his self-image and identity. However, some participants, such as Sarah and Peter, also reported that family members were burdened by their heart disease. In summary, heart disease leads to both an intensification of some relationships and the loss of others.

Grateful for the Gift of My New Life

The near-death experiences of acute cardiac events changed the priorities of the participants; they described their gratitude for the time they had left to live. All participants spoke of a changed attitude and more conscious perception and organization of time. Most participants described this as an emotional insight. Henriette (51 years) described cardiac sarcoidosis and recurrent CArr as follows:

That is a bit where I say, I do not really want to say a gift, but a second attempt that you can make. If it were the first time, well, I would be at the bottom. (Cries) I can do it now. I do not want to see it negatively or anything. I cannot change it. I can only make the best of them elsewhere. And for me, it is a good life when I say, okay, I would make the best of it, and I would persevere for the goals I have in life again.

Even if Henriette struggles with the term “gift,” as it seems too painful for her, it does express gratitude for the possibility to continue living. Barbara (57 years) also described a new awareness and joy about every day she was given:

Yes and I am happy every day when I get up and have breakfast, I can be happy that I read my newspaper, enjoy every breakfast, I am happy about all the little things because, I am happy about big things too, but you do not always have them and that is why I am happy about everything every day and everything is always sorted out with us.

The admission that Barbara is happy about big things, not just small ones, appears honest and humorous. Only some of the participants seemed to have cognitively realized that they should be grateful for life but not emotionally. Sarah (37 years) attempts to convince herself that she is grateful for her life, despite her heart condition:

It has turned into more like gratitude. I thought that if you look closely, you have everything. You have children. You have a husband. You have a nice house. It is not always easy. But it works now with one salary. Just be happy with what you have now.

Sarah seems to have entered into dialogue with herself here and feels committed to the imperative of being content. For most participants, perceiving and shaping life more consciously and being grateful and satisfied with what they have also led to a shift in the position of material goods in life. Material security was an important prerequisite for stability and security for a quarter of the participants. However, most described that relationships were becoming more important than material things. Georg (52 years), who was very concerned with his appearance before the illness, described a change in his own value system due to the heart disease:

The things that were valuable to me before were no longer as valuable to me, showing others how much money I earned by wearing the most expensive clothes, by driving the fanciest Mercedes and BMWs. That was no longer important. In the end, I became more modest.

This loss of value of material things, as portrayed by Georg, was paradigmatic for most participants. Henriette (51 years) also saw a certain degree of financial security as an important prerequisite for a good, unburdened life. Nevertheless, the importance of material matters diminished because of her heart disease.

A good life? Yes, without worries. Without problems, without worries. But it is … Life is up and down. Well, it is not like you can say it is always the same. Of course it would be nice, but … A good life, that you are financially secure, that is also a big part. And that you are also happy in life. I think that is important. So that is what … In the end, what good are all the material things if I am not satisfied with myself somewhere in life?

Thus, the participants’ attitude toward life changed as a result of heart disease; most were grateful and satisfied with their lives so far, appreciated the opportunity to continue living, and were more aware of life. Material things, on the other hand, had become less important and only played a role for some people as symbols of stability and security.

Discussion

Our study is innovative in two respects. First, although there are some studies with a qualitative design examining the holistic structure of the lived experiences with specific cardiac conditions, to our knowledge, this study is the first to examine cardiac diseases of any type and genesis, which are treated because of their symptom burden in an acute hospital setting. Besides the two meta-syntheses involving patients with OHCA examining QoL (Haydon et al., 2017) and the meaning of life and death (Aristidou et al., 2018), several other studies also have the same focus area. Patients with OHCA describe a “disrupted normality” (Whitehead et al., 2020), a bodily insecurity with the need for coherence, meaning, and normality (e.g., Bremer et al., 2009; Haydon et al., 2017; Palacios-Ceña et al., 2011; Uren & Galdas, 2015). However, PTG is also described owing to patients’ new perspective on life and a gratitude for their “second chance” (e.g., Forslund et al., 2014; Haydon et al., 2017; Ketilsdottir et al., 2014). Some studies suggest that the experiences of patients with OHCA are different from those with other cardiac conditions (cf. Forslund et al., 2014). Patients with MI without OHCA describe the same phenomena. They experience their life and world as threatened, their existence as insecure, and death as part of their everyday lives (e.g., Andersson et al., 2013; Johansson et al., 2003). Both male patients with MI and those with OHCA experience physical weakness (Merritt et al., 2017; Uren & Galdas, 2015). In contrast, patients with MI have gained new perspectives on life (Andersson et al., 2013; Kristofferzon et al., 2008). Although all participants in this study described the five superordinate themes presented, there were different emphases on the phenomena. Patients with OHCA, MI without OHCA, or ICD implantation owing to advanced CArr experienced more dramatic existential insecurity and a loss of bodily trust. Like in the case of Klaus, this led to lower demands for one’s own life and a sense of deeper gratitude. However, there were no significant differences between patients with OHCA and those with other serious, potentially lethal cardiac conditions. These phenomena have also been described in patients with severe CArr.

Second, although some studies have investigated aspects of a good life, such as QoL (Haydon et al., 2017) or well-being (Bremer et al., 2009), this study focused explicitly on described changes in the ideas of a good life among patients with heart disease. This draws on a holistic concept originating from philosophy. Although the concepts of HRQoL and a good life overlap, there are a few clear differences. While HRQoL always focuses on the current state of physical and psychosocial well-being, as well as somatic and psychological functioning (Bullinger, 2006), the concept of a good life describes an overarching form of self-reflection and self-affirmation with respect to one’s own lifestyle (Aristotle, 2008; Kraut, 2018; Steinfath, 2024). Thus, the concept touches on the question of how individuals want to shape their lives and the values they pursue. Therefore, this study focused less on how participants assessed their health impairment and more on whether and how the biographical disruption caused by a cardiac event led to a different view of one’s own life and life goals.

This study demonstrated the holistic relationship between reduced bodily trust and changed ideas about a good life in patients with cardiac diseases with a high symptom burden. Of the five themes, three were broadly described in qualitative research involving heart patients. As previously shown, the gratitude for a “second chance” in life is an emerging theme often described in cardiology (e.g., Forslund et al., 2014; Haydon et al., 2017; Kristofferzon et al., 2008). Most studies in this field have also described physical insecurity and loss of bodily trust. For example, in a study by Andersson et al. (2013), young patients described experiencing an unreliable body that needed to be controlled. Loss of control due to physical insecurity is a central theme in patients with OHCA (Bremer et al., 2009; Ketilsdottir et al., 2014) and in those with MI without OHCA (Johansson et al., 2003). Furthermore, Sert and colleagues (2021) described the physical insecurity caused by living with an ICD. The need for intense and sustaining relationships has also been described in literature. Previous studies have shown that relationships are particularly significant for coping psychologically with a disease, and that closely related persons are experienced as supportive (e.g., Bremer et al., 2009; Forslund et al., 2014; Sert et al., 2021). Alongside this supportive component of relationships, Ketilsdottir et al. (2014) identified a changed attitude in patients who survived SCA: familial relationships gain greater significance in the lives of those affected. However, many affected individuals experience feelings of guilt and shame because they feel burdened by close friends or relatives.

The findings of these two studies are new, and therefore, particularly noteworthy. Compared with previous ideas about a good life among the participants, these were described as more modest. A good life for participants is a simple life. They simply wish to live for a few more years, preferably with a lower symptom burden. Participants such as Sarah wanted to enjoy coffee while watching the children play. The reason for this relativization is the more uncertain future. Andersson et al. (2013) and Merritt et al. (2017) described the unpredictability of the future and shortened future perspectives in young patients with MI. Furthermore, the burdensome nature of the illness, unlike pain or cancer, has so far been rarely addressed in studies involving patients with OHCA or MI (Palacios-Ceña et al., 2011). Another interesting aspect was that a good life had to be a self-determinate one, and participants wanted to shape their lives actively. Autonomy is discussed as a central theme of a good life in philosophical discourse but appears particularly central to heart patients. Individuals experience a loss of control due to an acute cardiac event or for being permanently dependent on the healthcare system, medications, devices, or others. The feeling of dependence has been identified in several studies involving individuals with OHCA (Andersson et al., 2013; Bremer et al., 2009; Ketilsdottir et al., 2014). In the literature, self-determination as an ideal is mainly discussed among young male patients with MI because of their physical weakness and hegemonic masculine values (Allison & Campbell, 2009; Merritt et al., 2017). In the study by Ketilsdottir et al. (2014), male patients with OHCA also expressed that returning to work is an important step toward an active and self-determined life. However, in our study, no difference was found between male and female patients with heart disease in their desire for self-determination; rather, it is a comprehensive and relevant aspect of good living in all patients with heart disease.

This study had several strengths and limitations. The strength of this study was that patients with all types of cardiac diseases, who were treated in an acute hospital setting because of a high symptom burden, were interviewed. Furthermore, this study had good methodological quality because of the intensive and long process of evaluation and discussion. In addition, pre-understandings and assumptions were reflected and bracketed as much as possible. Interestingly, philosophical concepts and existential psychotherapy influenced the researchers, in contrast to the participants’ more modest ideas of a good life. The limitations were as follows: first, more men than women participated in the study. Likewise, all studies involving cardiac patients cited above included fewer women than men or no women. This is justified by the epidemiological fact that men develop heart diseases earlier than women. Although no relevant differences between genders were found regarding the themes we developed, sensitivity to gender-specific differences in cardiology research has been growing in recent years (Barton et al., 2023), and future studies should include gender-specific issues in the interview guide (e.g., male/female role identity, motherhood and fatherhood, pregnancy, and family planning). Second, in our study, most participants were recruited from an inpatient psychocardiological setting, which may have led to a bias owing to comorbid mental illnesses or psychotherapeutic treatment. However, the same themes were identified in five participants from a purely cardiological setting without a diagnosis of mental illness. Nevertheless, future studies should also include outpatient and rehabilitation settings, as this study recruited only participants who received university inpatient cardiological or psychocardiological acute treatment during or shortly before the interviews. In future studies, participants with a lower symptom burden should be investigated. Third, only one participant from a different cultural background and two participants with different than (!) heterosexual orientation were included. However, this was comparable with the percentage proportions in the general population. Finally, there was a broad professional and social spectrum among the participants—from academic professionals to craftsmen to persons who retired early.

Conclusion

In this study, we identified reported changes in ideas about a good life among individuals with heart disease with high symptom burden. These can be understood as complementary in terms of the existing broad knowledge about HRQoL in this patient group and used therapeutically in cardiological, psychosomatic, psychiatric, and psychotherapeutic practices. From a phenomenological perspective, the underlying experience of the participants was a loss of bodily trust, which affected all other aspects involving ideas of a good life. The aspects of experienced PTG are indicated by the increasing meaning of interpersonal relationships, which are perceived as supportive and fulfilling in the face of life-threatening heart diseases. Furthermore, through unsettled experiences, a changed perspective of and gratitude for life emerged. While these superordinate themes (“Being more in contact with relevant people,” “Grateful for the gift of my new life”) have often been described in literature, there were two new aspects. Participants described that their ideas of a good life had become more modest due to the serious heart disease (“Simply living a modest life”). In addition, the theme of “Actively shaping my life again” arises as a counter-tendency to the feelings of loss of control and helplessness that occur during an acute cardiac event, as well as dependence on healthcare, devices, medications, and an uncontrollable heart. On one hand, with respect to psychotherapeutic treatments in patients with heart disease, our results can be attributed to PTG as a significant therapeutic goal. On the other hand, a more modest life, self-determination, and attachment needs should be weighed more heavily. Further research efforts should involve patients with lower disease severity and young adults with congenital heart defects, with a focus on sex-specific issues.