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Heart failure is a chronic, progressive disease that affects millions of people in Europe and often imposes a heavy physical, emotional, and social symptom burden. Palliative care still often arrives late, after the illness has advanced and many needs have accumulated. Far from being limited to end-of-life care, early integration can meaningfully improve patients’ quality of life.

Early Palliative Integration

For years clinicians have recognized that heart failure can cause suffering on a par with advanced cancer. Although palliative care is most commonly associated with terminal illnesses — especially advanced cancer — it can provide substantial benefit much earlier in the disease course and in other specialties, notably cardiology.

Chronic conditions such as heart failure often bring relentless symptoms, repeated hospital admissions, and deep emotional and social effects for patients and their families. Bringing a palliative perspective into care widens the focus beyond disease-directed treatments to include ongoing symptom relief, emotional support, and help for overburdened caregivers. It also promotes early, shared planning about treatment intensity — deciding when worsening episodes can be managed at home vs when hospitalization is needed — and clarifying care goals as the illness progresses.

What needs do these patients have? Cristina Monforte-Royo, PhD, co-director of the WeCare Chair and vice rector for Planning, Quality and Strategic Development at International University of Catalonia (UIC), Barcelona, Spain, offers her view to Univadis Spain, part of Medscape’s Professional Network: “In advanced heart failure, palliative needs are very common and are not limited to the end of life. We are talking about dyspnea, fatigue, pain, anxiety, edema, drug side effects, uncertainty, loss of autonomy, family impact, caregiver overload, among others, as well as the need to make complex decisions about treatments and care goals.”

In practice, identifying these needs opens the door to concrete interventions such as symptom management and optimization, review of treatments and adverse effects, and addressing anxiety, insomnia, or emotional distress.

Why You Shouldn’t Wait Until the End

In cardiology, heart failure is a prime example of a condition that benefits from early palliative care. Its heavy symptom burden, repeated hospitalizations, and unpredictable course make these patients especially appropriate for a palliative approach. Yet the frequent ups and downs and intermittent exacerbations characteristic of heart failure have historically led clinicians to postpone palliative involvement until the disease is very advanced.

Monforte-Royo reflected that, indeed, “We have probably been slow to incorporate this palliative view into cardiology. Heart failure has a more unpredictable course than other diseases, with decompensations and partial recoveries, and that has made it harder to identify the right moment to act. But precisely for that reason, palliative care should be introduced early, integrated with cardiology, and not when there is nothing left to offer.”

In this context, Monforte-Royo said, collaborative work is required in which every professional involved contributes their perspective. Early coordination could make a difference for both the patient and the healthcare system.

The Benefits of Early Integration

Monforte-Royo explained that introducing palliative care much earlier represents a profound change in the care experience for these patients. When palliative care is introduced earlier, it stops being perceived as “end-of-life care” and becomes a way of accompanying patients better through the course of their illness. It allows for symptom control, discussion of patients’ concerns, anticipation of decisions, and support for the family.

She added, “For the patient, it means feeling heard as a person, not merely treated as a cardiac condition. For the caregiver, it means more guidance, less uncertainty, and more support. Together, it improves quality of life and helps ensure care is more aligned with each person’s values and preferences.”

Monforte-Royo said the early palliative approach would help the system become less reactive and more planned. Early identification of needs would prevent crises, unnecessary emergency visits, avoidable admissions, and diagnostic tests that do not always add value. “It’s not just about reducing costs but about using resources better. Early palliative care shifts the focus from responding late to crises to anticipation, home-based care, coordination, and shared decision-making,” she added.

A Digital Diary for the Heart

One challenge is identifying these needs in time and outside the hospital. New digital tools that aim to integrate palliative care with patients’ everyday monitoring have emerged in that context. The European RAPHAEL project, in which Monforte-Royo participates alongside researchers from the WeCare Chair at UIC and the General Hospital of Granollers, Barcelona, Spain, works in this direction.

The initiative incorporates a palliative perspective into routine follow-up through digital home-monitoring tools. Monforte-Royo explained, “RAPHAEL lets patients record symptoms, medications, worries, and changes in their condition from home — like a digital diary that includes both symptoms and needs. That information can be reviewed by professionals and can enable an earlier response.” (RAPHAEL is a European research project focused on integrating digital monitoring with multidisciplinary care for chronic disease.)

The goal is to detect physical, emotional, and social needs earlier; anticipate possible decompensations; and support more personalized, coordinated care. “This is very important because many needs don’t appear suddenly: They accumulate. Increasing dyspnea, greater fatigue, worse emotional state, or more difficulty in daily life can alert us before a severe decompensation,” she said. Besides turning everyday information into clinically useful data, the tool can help patients better understand their own course, prepare for medical visits, and communicate their needs more clearly.

Humanizing Care Before Crisis

From a palliative perspective with an emphasis on early action, the goal is not only to detect symptoms or anticipate decompensations but also to build a more continuous, coordinated follow-up centered on the person’s daily life, including care outside the hospital. Beyond prolonging survival, the challenge is to better accompany how patients live with their disease and, ultimately, improve their quality of life.

These models point in that direction, enabling better integration among cardiology, palliative care, primary care, nursing, and caregivers. They also make it possible to adapt care not only to clinical evolution but also to the values, priorities, and specific needs of each patient.

In Monforte-Royo’s words, the value of these models lies in combining innovation and humanization. Thus, technology would be used not to replace the clinical relationship but to complement it and detect suffering earlier, allowing for more personalized responses — all to the benefit of a patients’ quality of life and that of their family and caregivers.

Monforte-Royo declared having no relevant conflicts of interest.

This story was translated from Univadis Spain.