LVAD| Decision Making Process

LVAD | Patients with end-stage heart failure who are not eligible for cardiac transplantation would seem to face a stark choice. They can accept implant of a mechanical pump that could help to prolong life. Or they can decline it and live out the course of the illness.

Yet the dichotomy is far from simple, said Colleen McIlvennan, NP, principal investigator for a study of the decision-making process among patients considering “destination” (end-of-life) therapy with left-ventricular assist devices (LVADs), which provide partial mechanical circulatory support. With transplant off the table as an option, the decisions are complex and often feature a mixture of reason and emotion.

McIlvennan’s work, which summarized how patients approach this emotional decision involving complex trade-offs, brought the nurse practitioner in the hospital’s inpatient heart failure and ventricular assist device programs the Young Investigator Award at the American Heart Association’s Quality of Care and Outcomes Research (QCOR) conference in Baltimore May 16.

The study examined 17 patients recruited by physicians, nurses, and LVAD coordinators. McIlvennan and Carolyn Nowels, MSPH, of CU’s Colorado Health Outcomes Program, conducted 60- to 90-minute interviews of patients who accepted and declined destination-therapy LVADs. Detailed questionnaires followed. The feedback provided information about patients’ social backgrounds and diagnoses as well as how they made their decisions.

It’s a very complicated choice, emphasized Larry Allen, MD, an advanced heart failure and transplant physician.

“Although destination therapy LVADs can increase two-year survival rates from approximately 10% to 60% and nearly double quality-of-life measures in those who survive, these remarkable benefits come with a host of risks and burdens,” Allen wrote in an email. He said the majority of patients implanted with the devices suffer at least one major adverse event, such as stroke, and many are readmitted more than once to the hospital.

The interviews showed that patients went through two distinct decision-making processes, either “analytic-dominant” (based on weighing pros and cons and reasoned consideration of options) or “survival dominant” (driven by emotion, particularly fear of death and an unwillingness to succumb to illness).

All of the patients who declined the implant fell into the analytic-dominant camp, while most of those who accepted reflected a survival-dominant process.

For these patients, McIlvennan said, “death was not an option. There was no choice in their minds.” Decliners, on the other hand, “felt they had a choice. They believed they had led their lives and considered quality over quantity,” she said.

As destination LVAD therapy becomes part of the medical mainstream, McIlvennan said, it’s vital that providers understand the treatment decision for both patients and caregivers is an intricate weave of rationality, emotion and fundamental values and beliefs.

The words of one patient who declined the surgery illustrate this complexity. “I don’t know if the pump would keep me alive. And even if it does, I’m not sure it would be worth living,” the patient said. “Cause I’m not one of those persons who is going to claw and hold on to the wall to stay alive. I have absolutely no fear of death.”

Providers must take the time with patients to gain this kind of insight, McIlvennan said. “It’s important to know patients where they are,” she said. “Each one will approach the decision differently.”

McIlvennan’s interest in the question sprung from personal observations made as she treated and talked to her heart failure patients. She saw patients and families struggling with the decision of undergoing a major surgery to implant an LVAD that might extend life but also pose many post-procedure difficulties.The decision is not the patient’s alone, McIlvennan said, noting the hospital won’t implant an LVAD unless a caregiver is involved to assist with chores like dressing changes, exercise and routine activities of daily living.

Additional burdens include maintaining a constant electrical power source for the device, driveline care, and precautions while traveling and bathing, Allen said.

“We say an implant is made within the patient’s whole support system,” McIlvennan said. “Caregivers make many sacrifices for an individual who receives an LVAD.”

Work on the study showed the need for a more formal way to assess patients’ and caregivers’ values, McIlvennan said. After contacting mechanical support coordinators at other medical centers, she found no standard approach to meeting with patients, providing educational materials, involving families in the decision and so on.

“Patients and caregivers often aren’t sure of the information available to them or the opportunities they have to decide about the procedure,” she said. A research follow-up could involve developing a decision-making aid specifically aimed at patients considering an LVAD as destination therapy, she added.

McIlvennan received the Young Investigator Award after submitting an abstract of the study for the QCOR conference. She was one of five providers chosen – and the only non-physician – to make a presentation at the gathering. Judges chose her work on the basis of the manuscript and the innovation of the research. She received a plaque at a conference luncheon.

She said she got plenty of feedback during a brief question-and-answer session after the presentation.

“The study sparked interest from other centers,” she said. “Many were particularly impressed that we took the time to talk to patients and used their words and perspectives.”

The Research Team Providers at University of Colorado Hospital who worked on the study presented at the QCOR conference: » Colleen K. McIlvennan, DNP, ANP-BC » Carolyn Nowels, MSPH » Andreas Brieke, MD » Larry A. Allen, MD, MHS » Joseph C. Cleveland, MD » Daniel D. Matlock, MD, MPH