Big Gaps Between Heart Failure Patients’ Goals and Clinical Reality, Survey Reveals

A longitudinal survey of patients hospitalized with acute decompensated heart failure (ADHF) uncovered discrepancies in patient preferences, as well as limited advance care planning and clinician discussions.

Among 297 respondents — two-thirds of whom had comorbid kidney dysfunction — most prioritized comfort care (60.6%) over longevity-oriented care (20.9%), but a majority also expressed interest in intensive therapies, like temporary or permanent dialysis (75.4% and 57.6%) and implanted heart pumps (69% and 63%), reported Sydney Wong, a medical student at the University of Washington School of Medicine in Seattle.

The vast majority (88.9%) had no prior discussions with any of their clinicians about these interventions, and only 38.7% had signed a durable power of attorney at the time of hospitalization, Wong said during a late-breaking research session at the National Kidney Foundation’s Spring Clinical Meeting.

Furthermore, prognostic expectations were often misaligned with outcomes. Nearly 27% of participants died within 12 months, most of whom had comorbid kidney dysfunction, yet only 5% correctly predicted this prognosis.

Prior studies have reported similar results: patients with heart failure tend to value quality of life over longevity, yet advance care planning rates remain low because discussions are often delayed until death appears imminent.

“There’s a need to fill a major gap in physician-patient communication, as well as a need to better align care with patients’ goals and values,” said Wong. “Ultimately, the goal is to improve goal-concordant care for this very high-risk, very sick population.”

Because heart failure follows an unsteady course marked by recurring exacerbations, Wong explained that it is challenging for both clinicians and patients to know when to initiate goals-of-care discussions.

Wong noted that hospitalization for ADHF represents a “critical turning point,” as it indicates a poor prognosis both during admission and post-discharge, with a 1-year mortality rate of 20-30%. Outcomes are even more grim in the large subset of patients with heart failure and comorbid kidney dysfunction due to several factors including fluid retention, inflammation, and hormonal mechanisms.

“Hospitalization for ADHF thus may represent a particularly important opportunity to initiate or revisit these goals-of-care discussions, and kidney dysfunction itself may serve as an invitation for clinicians to engage in these discussions as well,” Wong suggested.

The findings also highlight a need to integrate prognosis into shared decision-making and to initiate advance care planning earlier in the disease course, revisiting it longitudinally rather than waiting for a crisis, she added.

This study was a subanalysis of the Kidney Injury in Heart Failure (KIND-HF) observational study, which surveyed patients from three hospitals from August 2020 to January 2024. All participants had physician-confirmed ADHF and received intravenous diuretics. Of the 297 patients surveyed, 119 had chronic kidney disease (CKD), 49 had acute kidney injury (AKI), and 25 had both.

Presence of CKD or AKI was not associated with significant differences in patient preferences for comfort compared with longevity, or with engagement in advance care planning. However, those with CKD were seven times more likely to have discussed dialysis with a healthcare provider compared with those without CKD, though having CKD did not appear to impact dialysis preferences.

During outpatient follow-up, most patients continued to prioritize comfort over longevity, though advance care planning remained limited. Preferences for intensive therapies also remained stable after hospitalization.

“Future work should focus on developing interventions that improve prognostic understanding and support shared decision-making in these patients,” said Wong.

“Potential areas include structured advance care planning interventions during hospitalization, communication tools that address multi-organ disease risk, as well as decision aids to help patients better understand intensive therapies and likely outcomes,” she concluded.