'Too Sick to Understand': Doctor-Patient Device Communication Falls Short

September 19, 2012

September 18, 2012 (Seattle, Washington) — Too often, heart-failure patients considered for implanted devices don't understand the capabilities, lifestyle implications, and risks of the treatment they may be about to receive.

That observation came from two studies of patient responses during interviews that also suggested important misconceptions can persist long after any such device is put in [1,2].

"He was too sick to understand it. And I was too tired to totally get the gist of it," said the woman of 70 years caring for a man with a left-ventricular-assist device (LVAD) in one of the studies, regarding the instructional video they saw before implantation.

Many patients in the other study recalled, accurately or not, that their physician had informed them before they received their implantable cardioverter-defibrillator (ICD) that the device "would have no lifestyle impact."

And most patients, about 80%, "could not recall a discussion of perioperative risk or potential long-term complications, such as the publication of an advisory or recall, inappropriate shocks, or depression," according to Dr Paul J Hauptman (Saint Louis University School of Medicine, St Louis, MO).

Based on the data and insights from the patient interviews and surveys, "patient-physician communication regarding ICDs is characterized by patient misinformation and a lack of attention to psychosocial and long-term risks by the prescribing physician," Hauptman concluded "Failure to fully engage patients in shared decision making may be widespread."

And as the comments from the woman caring for the LVAD patient illustrate, how and when physicians communicate with patients and caregivers makes a big difference.

"We found from this and other interview comments that patients and caregivers were often overwhelmed by their illnesses and that they were facing a life-or-death decision and that they don't actually recall a lot of the conversations that went on in that period of time," observed Dr James Kirkpatrick (University of Pennsylvania, Philadelphia).

In particular, patients appeared not to grasp the unique end-of-life implications of receiving a pump as destination therapy, indicating a "need for more explicit discussion of advance directives as they relate specifically to having [an LVAD]," he said.

Patients get a lot of information about how to live with the device and very little information on how to die with it.

"Patients get a lot of information about how to live with the device and very little information on how to die with it," Kirkpatrick said. "Advance directives need to be discussed both before implant and also after implant when patients and caregivers are able to engage in a thoughtful discussion about end-of-life issues."

Kirkpatrick and Hauptman presented the two analyses last week at the Heart Failure Society of America 2012 Scientific Meeting.

Patients and clinicians tend to focus on the technical aspects of treatment, but patients "are not aware of the implications, so they don't think ahead to those issues that we know actually come up," Kirkpatrick elaborated for heartwire . Often lost is discussion about stroke, infections, and other potential serious LVAD complications.

"What we need to do . . . is talk about advanced-care issues before the device even goes in, realizing the person has just had a tremendous overload of information at a very vulnerable time," he said. "Then revisit it after the patient has been out living with their device for a while and can make a more informed decision about what they would want or not want."

Short Shrift to Advanced Planning

Kirkpatrick and his colleagues received a total of 36 documents from five LVAD destination-therapy (LVAD-DT) programs in the US, including their "protocols, informed-consent statements, informational chapters, and contracts."

Subjected to text analytic programs, the documents contained little information about "end-of-life planning" or "advance directives," according to Kirkpatrick: only seven mentions overall for the two subjects combined. Of the other prospectively defined subject areas, "other options" for therapy and "consequences without the device" each received only three mentions.

"Training and evaluation" issues for patients implanted with the pumps and their "behavior requirements" predominated, with 24 and 20 mentions, respectively.

They also conducted "open-ended, semistructured" interviews with 17 male and four female LVAD-DT patients as well as four male and 18 female caregivers (usually an LVAD-DT recipient's partner). Among the resulting insights: overall they had poor understanding of how the device therapy would alter their previous expectations about dying.

LVAD-DT Patient and Caregiver Responses to, "Does Having an LVAD Affect What Should Be in an Advance Directive?"


Patients, n=21 (%)

Caregivers, n=22 (%)







Don't know



Unclear or no answer



Session comoderator Dr Gary S Francis (University of Minnesota, Minneapolis) asked Kirkpatrick about preferred timing and frequency for advanced-care and end-of-life discussions in patients getting LVAD-DT, in addition to discussion before implantation. Acknowledging a lack of data on it, Kirkpatrick said, "It would be helpful at least three months out after [implantation] because there tends to be a bit more stabilization, or at least an idea of where the trajectory is going. Hopefully by that time, too, there's increased perfusion to the brain--so a decrease in cognitive dysfunction that [can] happen to heart-failure patients--and a better understanding of what's going to happen moving forward."

"Amenable to an Educational Initiative"

Taking a similar approach in 41 patients with ICDs, recruited by an independent company at two centers for participation in smaller focus groups, Hauptman and his colleagues found that patients demonstrated substantial shortfalls in how well they were informed preimplantation about life with the device. They rated that information 5.7, on average, on a scale from 1 to 10. Only about one-third could state their precise ICD indication and device type, and few could recall being informed about the risks of recalls/safety alerts, inappropriate shocks, or depression.

Months after receiving the devices, many of the patients still expressed concerns about undergoing MRI or mammography with the devices and uncertainties about battery life, generator replacement, getting shocked, and electrical interference from other sources, according to Hauptman.

"I think it's very troubling and a subject we'll have to pay attention to," Francis said after Hauptman's presentation. At his center, he speculated, proposing one potential source of poor physician-patient communication, "sometimes pretty junior people end up looking after these patients, and not as much [senior] faculty as perhaps there should be."

Hauptman replied, "I would look at this somewhat optimistically. We've identified the problem; we know what it is. Now we have to take the next step, which is really to engage our trainees, our junior faculty, and our senior faculty in ways to communicate. There are many difficult discussions that we have to have with patients with heart failure; this is just one of many," he said. "We think this is amenable to an educational initiative."

In his turn with Francis after presenting, speculating about possible causes of poor LVAD-DT physician-patient communication, Kirkpatrick noted that talking about end-of-life issues can make both parties uncomfortable, but "we've found too when we introduce this idea of advance directives, patients are all geared up to be saved by their left-ventricular-assist device. So it feels a bit strange to actually start talking about, what if it doesn't work? Clinicians and patients can be a bit resistant to that."

Kirkpatrick had no disclosures; his study was supported by a grant from the Greenwall Foundation. Hauptman said he has no relevant disclosures; his study was funded by his center. Francis had no disclosures.