There's a big discrepancy between the way patients with "advanced" heart failure view themselves and the way their doctors view them, shows.
In a cohort of 161 ambulatory patients with advanced heart failure, physicians categorized 111 patients (69%) as being at high risk for urgent transplant, a left ventricular assist device (LVAD), or death within a year. But only 14% of those patients identified themselves in the same high-risk category. Only 22% of the patients estimated that they had a life expectancy of less than 1 year, while 42% estimated a life expectancy longer than 5 years.
In addition, only 51% had designated a healthcare proxy or power of attorney, and only 37% had talked about treatment options with their physicians. The authors also noted that the patients "opinions on specific treatments were also inconsistent," because 77% of patients said that they would consider LVAD implantation but most said they would decline lesser interventions like ventilation, dialysis, or a feeding tube.
"It was surprising that there were such drastic differences between patient perceptions and physician perceptions of heart failure disease severity," Amrut Ambardekar (University of Colorado) lead author of the study, said in a press release. "We hope better understanding these differences will facilitate improved patient-physician communication regarding advanced heart failure therapies."
"More than likely, these inconsistencies indicate a poor understanding of these treatment options," Ambardekar said. "Patients may not fully appreciate the invasive nature of some of these procedures, so we probably need to look for better ways to educate our patients both on the severity of their disease and their treatment options – well before they need these advanced therapies."
Harlan Krumholz (Yale University) commented on the mismatch in perception uncovered in the paper:
"Patients are often more optimistic about their prognosis than past experience would indicate is merited. That optimism, or hope, is something that can sustain people. It can also betray them in the course of decision-making – and so we need to find ways to ensure people understand their risks well while not have an unintended consequence of dashing their hopes. For patients truly at the end of life, the issues are related in that we ought to be supportive in delivering information about poor prognosis – so ensuring informed choices are being made while being careful to provide hope that they can make the best of even a dire situation."
Feisty Disagreement Over Statistics
A perennially popular guest post on CardioBrief was written in 2010 by Mary Knudson, a medical journalist who had heart failure. In her post, "Heart Failure Death Statistics: Don't Believe What You Read On The Internet," Knudson feistily objected to the following :
"Q: What is the prognosis for a patient with heart failure?
A: Less than 50 percent of patients are living five years after their initial diagnosis and less than 25 percent are alive at 10 years. Poor prognosis can be attributed to a limited understanding of how the heart weakens and insufficient private and government funding."
I won't attempt to repeat all of Knudson's concerns about this statement, but she felt that it did not take into account improvements in treatment over the previous decade and did not offer sufficient hope to many lower-risk patients like herself. She also wrote:
"I also felt uneasy reading the HFSA answer that tied 'poor prognosis' to 'insufficient private and government funding'. That seemed to have a political tinge to it, out of place in an answer directed to worried patients and family members about how long someone can live with a diagnosis of heart failure ... I doubt any doctor ever tells a patient's family, 'Your husband and father is in late-stage heart failure and has only a few months to live because the government didn't fund enough grant money for heart failure research'."
Chris O'Connor (Duke University) is not only the editor of JACC: Heart Failure but the president-elect of HFSA. I asked him to comment on Knudson's post in light of the new paper. He wrote that he "feistily defends" the publication of the statistic on the HFSA website and cited research supporting this position:
"The need for more research in a condition that is more prevalent and lethal than cancer begs the question as to why more private and federal dollars are not spent on HF," O'Connor wrote. "What we need is greater advocacy. There are no Angelina Jolie stories in the field of heart failure. Let's get the message out: HF is lethal and neglected; we need to change the discourse."
My Take: I think the message on the HFSA website is seriously misguided. At what may be one of the most frightening and challenging times of their lives, newly-diagnosed heart failure patients who are likely to seek information on the website should not be manipulated and recruited to advocate for increased research funding. What they need at that point is reliable, trustworthy, and helpful information to help guide them through this difficult next stage in their lives. If they choose to become a disease advocate, that is their choice. I suppose there is an acceptable role for the HFSA to play in this regard, but that shouldn't interfere with the greater obligation of the Society to provide objective and useful information to heart failure patients.