–Patients with LVADs and their caregivers suffer from confusion and uncertainty at the end of life.
More and more people with advanced heart failure are receiving left ventricular assist devices (LVADs) as destination therapy. Now clinicians who treat these patients are reporting that the patients and their caregivers are suffering from an extraordinary amount of confusion and uncertainty as patients near the end of life.
In a paper published in JAMA Internal Medicine Colleen K. McIlvennan and colleagues describe their discussions with 8 bereaved caregivers of University of Colorado LVAD patients. Despite an enormous amount of discussion and education prior to receiving the device, the caregivers said that they had experienced a great deal of confusion and uncertainty as their LVAD patient approached death.
“There remains a need for the health care community to develop clear guidance on the management of patients with an LVAD at the end of life,” write the authors.
The researchers identified common themes brought up by the bereaved caregivers: Both patients and caregivers were confused about the process of death with an LVAD and the legal and ethical issues raised by the presence of an LVAD in the period before death. Another source of confusion was the difficult integration of palliative and hospice care, since these programs were not familiar with and had not made sufficient adjustments for the specific problems raised by LVADs.
One caregiver described trying to explain to an EMT why his friend had no pulse and could not have his blood pressure measured. Another recalled a comment from her daughter: “‘You know, Mom, he probably can’t die even though he wants to. Because everything is keeping him going.’”
All 8 caregivers were “confused and uneducated about the option to turn off the LVAD.” Although the option had been previously discussed, many caregivers felt unprepared and uncomfortable with it. The authors report that 6 caregivers “viewed turning off the LVAD as suicide and 1 caregiver even went so far as to call it murder. One caregiver described how her husband requested several times that the LVAD be turned off; however, she continued to tell him that it was not his decision, but it was ‘the Lord’s decision’.”
The authors described “an unmet need for educating patients and families on what to expect at the end of life with this technology. As an LVAD community, our focus should not only be implant and medical management but also the aftereffects of implantation and death with an LVAD.” They note that “physicians must anticipate issues and explicitly acknowledge that dying with an LVAD implanted as destination therapy is expected.” They also recommend improved communication and integration of the LVAD team with palliative and hospice care.
At the time of the initial LVAD decision patients and caregivers “are bombarded with information and decisions. They’re really focused on the present, a lot of them are focused on survival, and there’s a lot of emotion and fear of death,” said McIlvennan in an interview. She said she talks to patients “about the end of life and the right to turn off the LVAD” but when “I’ve circled back to patients they don’t recall it at all.”
Larry Allen, a co-author of the report, said that “you can’t do it all at once. People only have a capacity to take in so much at one time. So it’s got to happen over time and over multiple visits. Once patients have the device it’s not that the work is done. It’s ongoing.”
Allen also said that it’s important for healthcare professionals to help patients and their caregivers understand the difference between hope and denial. “One of the thing we want people to do is retain their hope… but we also want to balance that with preparing people for when things don’t go as they wish, so their families are prepared to deal” with death.