A new study reveals a troubling disconnect between what heart failure patients truly want and the care they actually receive. When patients are hospitalized for a severe episode called acute decompensated heart failure (ADHF), many say they prefer comfort over living longer. Yet, at the same time, most of these same patients express interest in very intensive treatments like dialysis machines and implanted heart pumps.

The research, presented at the National Kidney Foundation’s Spring Clinical Meeting, surveyed 297 patients who were hospitalized with ADHF. The findings show that doctors and patients are often not on the same page, and that critical conversations about end-of-life care are happening far too late — if at all.

What the Study Found: A Clash Between Comfort and High-Tech Care

Among the 297 patients surveyed, about two-thirds also had kidney problems. This is important because heart failure and kidney disease often occur together, making treatment more complex.

Here are the key numbers from the study:

• 60.6% of patients said they preferred comfort care over treatments aimed at extending life.
• Only 20.9% chose longevity-oriented care.
• Despite wanting comfort, 75.4% were interested in temporary dialysis and 57.6% wanted permanent dialysis.
• Similarly, 69% wanted a temporary implanted heart pump, and 63% wanted a permanent one.
• A striking 88.9% had never discussed these intensive treatments with any of their doctors before the study.
• Only 38.7% had signed a durable power of attorney — a legal document that names someone to make medical decisions if you cannot.

Sydney Wong, a medical student at the University of Washington School of Medicine who led the research, explained that these numbers reveal a major breakdown in communication. Patients want comfort, but they also want life-saving technology. Without clear conversations, doctors may not know which path to follow.

Why This Matters for Heart Failure Patients

Heart failure is a chronic condition where the heart cannot pump blood as well as it should. It affects millions of Americans and is a leading cause of hospitalization among older adults. The disease does not follow a straight line. Instead, patients often have flare-ups — times when symptoms suddenly get much worse. These episodes, called acute decompensated heart failure, are serious and often require emergency hospital care.

For patients and their families, this unpredictable course makes planning very difficult. You might feel fine one month and be in the hospital the next. This rollercoaster pattern is one reason why advance care planning — having conversations about what treatments you want or do not want — often gets pushed aside.

Experts say that waiting until a crisis hits is a mistake. By then, patients may be too sick to speak for themselves, and family members are left guessing about their wishes. The study shows that even when patients are hospitalized, these conversations are rare.

Prognosis Misunderstandings: Patients Don’t Know How Sick They Are

Perhaps the most sobering finding was about how patients viewed their own futures. Nearly 27% of the participants died within 12 months of being hospitalized. Most of these patients also had kidney disease. Yet only 5% of all patients correctly predicted that their prognosis was this poor.

This means the vast majority of patients did not understand how serious their condition truly was. Without this understanding, it is very hard for them to make informed choices about treatments like dialysis or heart pumps. They may choose aggressive therapies hoping for a full recovery, not realizing that the odds of survival are low.

Wong pointed out that hospitalization for ADHF is a critical turning point. The one-year death rate for these patients is between 20% and 30%. For those with both heart and kidney failure, the outlook is even worse due to factors like fluid buildup, inflammation, and hormonal changes that damage the body further.

What Experts Say About Advance Care Planning

Doctors and researchers have known for years that heart failure patients often value quality of life over living longer. Prior studies have shown the same pattern. Yet advance care planning rates remain stubbornly low. Why?

One reason is that these conversations are difficult. No doctor wants to tell a patient that they may have less than a year to live. And no patient wants to hear it. But experts argue that avoiding the topic does more harm than good. When patients do not know their prognosis, they may choose treatments that cause suffering without offering real benefit.

Wong suggested that the presence of kidney disease could be a natural starting point for these discussions. Since kidney failure often requires dialysis, doctors can use that as an opening to talk about goals and preferences. She noted that patients with chronic kidney disease (CKD) were seven times more likely to have discussed dialysis with a healthcare provider compared to those without CKD. However, having CKD did not change their actual preferences for dialysis. This suggests that the conversation itself — not the kidney diagnosis — is what matters.

Details Behind the Study: Who Was Surveyed?

This research was part of a larger project called the Kidney Injury in Heart Failure (KIND-HF) observational study. Patients were surveyed from three different hospitals between August 2020 and January 2024. All participants had a confirmed diagnosis of ADHF and were receiving intravenous diuretics — medications that help remove excess fluid from the body.

Of the 297 patients:

• 119 had chronic kidney disease (CKD), a long-term decline in kidney function.
• 49 had acute kidney injury (AKI), a sudden and often reversible drop in kidney function.
• 25 had both conditions.

Interestingly, the presence of CKD or AKI did not significantly change whether patients preferred comfort over longevity, nor did it affect how engaged they were in advance care planning. This tells us that the disconnect is not just about kidney disease — it is a widespread issue affecting all patients with severe heart failure.

What Happens After Hospitalization?

The study also followed patients after they left the hospital. During outpatient follow-up, most patients continued to say they preferred comfort over living longer. Their preferences for intensive therapies also stayed about the same. But advance care planning remained limited even after discharge.

This suggests that a single hospitalization is not enough to change behavior. Patients need ongoing conversations over time, not just one talk when they are very sick. Wong emphasized that advance care planning should be revisited regularly, not treated as a one-time event.

Practical Takeaways for Patients and Families

If you or a loved one has heart failure — especially if kidney problems are also present — here are some steps experts recommend:

• Start the conversation early. Do not wait for a hospital stay to talk about what treatments you want. Discuss your goals with your doctor during a routine visit.
• Ask about prognosis. It can be scary, but knowing your likely outcomes helps you make better decisions. Ask your doctor: “What is my expected survival over the next year? What are my chances of needing dialysis or a heart pump?”
• Complete a durable power of attorney. This legal document names someone you trust to make medical decisions if you cannot. Only about 38% of patients in the study had done this. Make sure you are not in the majority who have not.
• Write down your preferences. Consider creating a living will or advance directive that spells out your wishes for care, including whether you want dialysis, a heart pump, or only comfort measures.
• Revisit your choices regularly. Your goals may change as your health changes. Review your advance care plan at least once a year or after any major hospitalization.

What Comes Next: The Future of Heart Failure Care

Wong and her team believe that the next step is to develop tools that help patients understand their prognosis and make decisions that match their values. These could include:

• Structured advance care planning programs that take place during hospitalization, when patients are face-to-face with their mortality.
• Communication tools that explain how heart and kidney disease interact, so patients understand the full picture of their health.
• Decision aids — simple guides or videos that help patients compare the benefits and burdens of treatments like dialysis and heart pumps.

“Ultimately, the goal is to improve goal-concordant care for this very high-risk, very sick population,” Wong said. In plain language, that means making sure the care patients receive actually matches what they want. For too many people right now, that is not happening.

The study was presented at the National Kidney Foundation’s Spring Clinical Meeting and is considered preliminary until published in a peer-reviewed medical journal. But the message is already clear: doctors and patients need to start talking — and talking early — about what matters most at the end of life.

Source: MedPage Today