Patient Family Advisory Councils: Listening and Learning from the Patient Experience

Hosparus Health depends on feedback from the families we serve to ensure our care is the best that it can be, and we’re always looking for new ways to learn from them. Patient Family Advisory Councils (PFACs) bring healthcare providers together with patients and families who have experienced their care in a comfortable forum that encourages open, honest discussion.

PFACs are common in settings like hospitals and outpatient health clinics. The first PFAC started in 1998 at a Cancer Institute in Boston and today, there are over 2,000 across the country. But PFACs in hospice organizations like ours are extremely rare. There are only a handful in the United States and none in Kentucky or Indiana.

Bringing Families Together

The goal of a PFAC is to allow families, patients and staff to come together to impact the quality of care and improve the future family and patient experience. The council helps inform an organization’s continuing education and training, as well as policy and process changes.

Hosparus Health launched our first PFAC in Louisville in September 2018. We invited 10 families to sit down with our executive team, senior leadership and clinical staff for three sessions.

Each family shared their loved one’s story, from how they were referred to Hosparus Health, to the experience of being admitted into our care, to visits with each member of our care team, to how they navigated the challenges when their loved one was actively dying, and more importantly — how each part of this experience felt.

One family said, “When the nurse was sitting with me and my husband, I didn’t feel that they had other patients to see. I felt that they were totally right there with me for as long as we needed.”

Comments like this one illustrated the emotional impact of our care, which is what makes the PFAC so valuable. Emotional impact is very difficult to measure on an impersonal survey form.

Putting Words into Action

What we learned wasn’t all positive, however. It was hard to hear from families who told us they didn’t receive what they perceived as the highest quality of care. In those cases, the PFAC was truly healing for them, and we learned so much from the information they shared.

For example, a family member who was very angry about her loved one’s care before joining the council told us afterward that she was able to find some meaning in the experience and impact future patients and families in a positive way. Other families shared that the PFAC helped them process their grief.

The ultimate goal of our PFACs is to use both the positive and negative feedback we hear during the first two meetings to pinpoint themes across the families, then identify measurable changes that will have the most impact.

We bring the families back for a third meeting to share our action plan. This final meeting is significant because it allows families to see that what they shared is truly driving change in our organization. For example, our complaint policy was put into place as a result of the first PFAC.

The Future of PFACs

Because the first one was so successful, we convened a second PFAC in Louisville in 2019 with similar results. In 2020, we are planning a total of five new PFACs in Louisville, Barren River, Central Kentucky, Southern Indiana and Green River. By the end of this year, around 70 family members will have participated.

Patient Family Advisory Councils are an amazing tool that allow us to partner with our families and learn together. It has been very satisfying for both the families who served on the councils and our staff and leadership. If you’re interested in being part of a Hosparus Health PFAC in your area, please call me at 502-719-4217.