One of the many things we all had in common was careers dedicated to improving the quality of health care, long before we were patients and caregivers. As Wendy’s only daughter, Melinda, and her only sister, Ginny, we were honored to be her tireless advocates throughout her illness. We vowed to use our backgrounds and experience to make things better for other heart failure patients and their families after Wendy’s death.

The Unexpected

In Summer 2013, doctors diagnosed Wendy with heart failure, which affects more than 6 million American adults. Initially, Wendy responded well to heart medication.

While Wendy’s worsening heart failure was subtly unfolding before our eyes, there were few opportunities to discuss her wishes. Once her doctor determined that she was no longer responding to medication, she had additional tests scheduled to determine the best interventions. 

As Wendy pulled into the hospital parking deck for her appointment on October 13, 2014, she suffered an unwitnessed cardiac arrest. Against all odds, a compassionate bystander and several physicians worked together to heroically resuscitate her.

A few days later, doctors talked to us about implanting a Left Ventricular Assist Device (LVAD) to help her ailing heart. The doctors provided videos and educational brochures that the device’s manufacturer had developed, depicting best case scenarios. We voiced our hesitancy and questioned serious and probable complications but received assurances Wendy “would feel better than she had felt before” and would be home by Thanksgiving.

This provided a very unrealistic picture of the expected course of Wendy’s recovery.

Making Tough Decisions

We all felt extremely ill-equipped to make this decision on Wendy’s behalf. When she began regaining consciousness, we pushed for a multidisciplinary conference with Wendy’s care team at her bedside. Surprisingly, we were met with resistance to our request, but after our insistence they agreed.

During the conference, the team reiterated that Wendy would feel much better and that the only things she wouldn’t be able to do were vacuum and swim. Despite all she had endured and her fragile cognitive state, Wendy said, “It’s a no-brainer.”

But days after surgery, she looked at us and asked: “Who agreed to the LVAD?”

Our mental and physical marathon was only getting started.

A Complicated Solution

In the following seven months, Wendy endured nine transfers between the intensive care unit and a long-term acute care hospital, undergoing nine surgeries and multiple procedures to combat complications.

Although we remained hopeful that we would bring her home, on May 9, 2015, our family made the painful decision to deactivate her LVAD. We were completely unprepared, as at no time were deactivation scenarios discussed.

Wendy had slipped into a coma from septic shock and other complications. After an ambulance transferred her to the intensive care unit for the final time, the team told us that there was nothing more they could do. We stood by her side as she took her last breath the night before Mother’s Day.

To this day, we often wonder if we made the right choice for our Wendy. Would having a realistic picture and balanced discussions of the LVAD’s risks and benefits have allowed us to reach a different decision? Would our family have been more at peace with that decision?

The Power of Shared Decision Making

In Spring 2015, Ginny met Larry Allen, MD, MHS, at a meeting on cardiovascular quality measures. Since then, we both have provided our perspectives on LVAD shared decision making with Allen’s team, including as stakeholders for the PCORI-funded DECIDE-LVAD Trial and the ongoing dissemination and implementation project.  

Allen was a presenter during a 2018 PCORI Annual Meeting plenary session. View the session and his presentation slides here.

We have been honored to be a part of the discussion and to provide feedback on the team’s patient education materials.

Candid discussions occurring very early in a patient’s diagnosis are paramount. Patients should be presented with comprehensive decision aids, informative materials, and clinicians who can answer tough questions honestly. This can help patients make a decision consistent with their beliefs and values. Caregivers and other trusted individuals close to the patient should be considered as partners in the decision-making process, as caregiver support is critical for LVAD patients. Our role as caregivers is to fully understand what is at stake, and if we accept our role, be an advocate, supporting our patient’s wishes for the way they will live and the way they will die.

There is no doubt in our minds that the decision aids Allen and his team developed, and that Daniel Matlock, MD, MPH, and his team are expanding the use of in their PCORI-funded dissemination and implementation project, will positively benefit LVAD patients and their families.

These comprehensive yet objective, evidence-based decision aids will enable patients and families to hold productive conversations with their care teams, arriving at a treatment decision that is realistic for patients.

Heart disease is the leading cause of death in our country so PCORI’s funding of projects like these is critical to helping individuals make the right treatment decision for them.

The decision to make an LVAD part of everyday life or not is highly personal and extremely complex. It is also important to remember that choosing an LVAD is a life-changing decision for the caregiver as well.

Our experience has proven that even though we can, it doesn’t mean we always should. 

The views expressed here are those of the author(s) and not necessarily those of PCORI.