Palliative care in patients with cardiovascular conditions: from conceptual clarity to implementation science

This invited commentary refers to ‘Understanding heart failure patients’ beliefs and social representations of palliative care and advance directives’ by N. Vionnet Rouxbedat et al. https://doi.org/10.1093/eurjcn/zvag055. Palliative care is a specialized medical approach designed to enhance the quality of life for patients with serious, often life-limiting illnesses.1 It focuses on alleviating suffering by addressing physical, emotional, social, and spiritual needs, thereby improving overall well-being for both patients and their families.1 Unlike hospice care, which is limited to those nearing the end of life, palliative care can be integrated at any stage of illness and can be provided alongside curative treatments.2,3 Research demonstrates that early integration of palliative care reduces hospitalizations and unnecessary medical interventions, reflecting a shift towards more patient-centred healthcare, aligning with patients’ wish to spend the end of life in a trusted home environment.4 Additionally, palliative care provides essential support for families by acknowledging the emotional and physical toll of caregiving and by fostering communication with healthcare providers to facilitate shared decision-making.5 Palliative care is often described as one of the most neglected aspects of global health, with ‘quality of death and dying’ showing significant inter-country variations.6 The Global Atlas of Palliative Care estimates that over 56.8 million adults globally are in need of palliative care.7 The majority of people in need for palliative care die from cardiovascular disease (38.5%) or cancer (34%).8 Yet, palliative care in patients with cardiovascular disease remains underutilized, and is often initiated later in the disease trajectory when compared to cancer populations.9–11 A lack of screening for palliative care needs and patients’ views regarding palliative care may be important hurdles for the timely integration of palliative care. The qualitative study by Vionnet Rouxbedat and coworkers provides an in-depth exploration of how patients with heart failure conceptualize palliative care and advance directives.12 Through thematic analysis of interviews with patients across New York Heart Association functional classes II to IV, the authors reveal a fragmented, often distorted understanding of palliative care.12 Several key findings deserve emphasis. First, palliative care is overwhelmingly associated with imminent death. Patients often perceive it as ‘the last stage’ or a point of no return, rather than a supportive, parallel approach to disease management. This aligns with older conceptions in which patients consider palliative care only when they are ‘on their deathbed’.13 The persistence of this belief, despite guideline recommendations advocating early integration, reflects a deep-rooted cultural and communicative failure within healthcare systems. Second, there is a striking disconnect between clinical vulnerability and the perceived relevance of palliative care. Even patients with advanced disease and high mortality risk often do not consider themselves concerned by palliative care. This echoes earlier findings that patients with heart failure frequently underestimate disease severity and do not perceive their condition as terminal.14 Such misalignment complicates timely advance care planning discussions. Third, the study highlights the near absence of formal advance directives. Although some patients recognized their importance, none had completed one. Instead, preferences are often informally delegated to family members. This reflects broader international trends, where completion rates remain low.15 In that light, the authors identify practical and emotional barriers, including fear of making errors and lack of guidance, suggesting that the main hurdle is not resistance but insufficient support.12 Fourth, personal experience emerges as a powerful determinant of attitudes.12 Patients who had witnessed end-of-life care in relatives displayed more nuanced and positive perceptions of palliative care. This finding is consistent with evidence indicating that experiential knowledge reshapes beliefs about serious illness and care preferences.16 It also suggests that exposure, whether through lived experience or structured interventions, may be a lever for change. Finally, the study uncovers a paradox that deserves particular attention: patients express a desire for a rapid, painless death while simultaneously accepting or even valuing life-prolonging technologies such as implantable cardioverter-defibrillators.12 This inconsistency highlights the absence of integrated conversations about prognosis, treatment burden, and goals of care. Indeed, prior work has shown that discussions about device deactivation are rare and often delayed,17 underpinning the need for proactive, longitudinal advance care communication. Collectively, this study contributes to the body of knowledge by moving beyond structural and clinician-focused barriers to illuminate the patient perspective. It demonstrates that misconceptions are not merely informational deficits but socially constructed representations shaped by culture, experience, and healthcare interactions. A critical interpretation of these findings suggests that the underuse of palliative care is not as much a problem of awareness among patients, but also a failure of relational and communicative processes. Indeed, patients do not operate in isolation. Their beliefs are shaped by how clinicians introduce, or avoid introducing, palliative care. A recent discussion paper published in the European Journal of Cardiovascular Nursing emphasizes that primary palliative care, including symptom management, communication, and advance care planning, should be embedded in routine care and delivered by all clinicians, not only specialists.13 Yet, in practice, many clinicians feel underprepared or uncomfortable initiating these conversations. Time constraints, prognostic uncertainty, and fear of diminishing hope are frequently cited barriers. However, deferring these conversations has consequences. When advance care planning is introduced during acute deterioration, patients may experience cognitive overload and emotional distress, impairing well-informed decision-making. In addition, evidence suggests that health literacy, rather than demographic factors, is a key determinant of end-of-life preferences.18,19 This underscores the need for timely, iterative discussions that build patients’ understanding over time. The study by Vionnet Rouxbedat and colleagues thus reinforces a crucial insight: misconceptions about palliative care are not simply corrected by providing information. They require sustained dialogue, trust, and contextualization within the patient’s illness trajectory. A crucial next phase in cardiovascular research is to move beyond heart failure. Indeed, patients with other cardiovascular conditions may also require palliative care. For instance, a Belgian study showed that of patients with congenital heart disease who died, only 17% received specialist palliative care.20 Notably, those who died due to a malignant cause received palliative care in 53% of the cases, compared to only 4% in those who died due to a cardiovascular cause.20 This again shows that malignancies are a common trigger to initiate specialist palliative care. It is crucial that research moves from descriptive studies toward intervention and implementation initiatives. There is a need to develop and evaluate communication strategies tailored to heart failure and other cardiovascular populations. Interventions should focus on normalizing palliative care as part of routine care, using language that clearly distinguishes the concept from end-of-life care.13 Structured tools, such as the Needs Assessment Tool for heart failure, have shown promise in identifying palliative care needs and facilitating discussions.21 Further, there is a need to address disparities in palliative care access and engagement. Socioeconomic factors, health literacy, and cultural beliefs influence participation in advance care planning and palliative care. An international study in over 8000 patients with congenital heart disease from 32 countries showed a high variability in advance care planning across countries, with the United States and Canada at the top of the class.22 Future studies should examine targeted interventions for underserved populations and assess their effectiveness. Determinants influencing palliative care participation, including socioeconomic factors, health literacy, and cultural beliefs, need to be taken into account. To ensure a structured implementation of palliative care for patients with cardiovascular diseases, the application of implementation science principles is warranted. Change of practice and knowledge translation should be placed at the centre of scientific endeavors.23 From this perspective, appropriate study designs include pragmatic trials, implementation studies, or mixed-methods approaches that can directly inform clinical workflows and service organization.24 This applied research orientation ensures that findings are readily transferable to routine practice and can be adopted across diverse healthcare settings. The underuse of palliative care in cardiovascular disease is not a new problem, but it remains unresolved. The study by Vionnet Rouxbedat et al. offers a valuable contribution by illuminating the beliefs and representations that shape patient engagement.12 It reveals that misconceptions about palliative care are pervasive, deeply rooted, and consequential. If cardiology is to truly evolve towards person-centred care, it must move beyond the dichotomy of comfort vs. cure. Palliative care should not be a late addition, but an integral component of the therapeutic continuum. Achieving this not only requires education but a cultural shift in the way clinicians communicate, the way patients are engaged, and how care is organized. Léonie C. Desmedt (Writing—original draft [lead]), Chloé P. Desmedt (Writing—review & editing [equal]), and Philip Moons (Conceptualization, Supervision [lead], Writing—review & editing [equal]) Chloé P. Desmedt is funded by a grant of the Frans Van de Werf Fund for cardiovascular research. This commentary does not contain new data.