Palliative Care Is Complex, But It Doesn’t Have To Be Confusing

PCforMe simplifies palliative care, empowers patients, and increases satisfaction.

Historically, patients researching palliative care for the first time haven’t had the most helpful resources. Educational webpages tend to use medical terms, and often don’t explain the differences between palliative care and hospice. PCforMe’s interactivity seeks to personalize the education to the patient, and make their research relevant to them.

PCforMe is an online platform that uses interactive videos to educate patients and their caregivers about how palliative care works, learn about its benefits, and clearly define what they want their care journey to look like. The tool helps patients create their Palliative Care Passport, a summary of the patient’s goals and a guide to lead the patient through their upcoming appointments. PCforMe is available through Acclivity Health’s platform, and can be sent to new patients in advance of their appointments to help providers understand their wishes.

“A lot of the jargon used in palliative care is standard throughout the industry, but it can be confusing to those who are new to these conversations,” says Jon Nicolla, MBA, chief product officer at Acclivity Health. “Unlike static information on a webpage, PCforMe creates an animated, interactive setting in which folks can think about their care.”

When a patient or caregiver begins PCforMe, they learn the basic concepts of palliative care, like symptom management and goal setting, the differences between hospice and palliative care, and how to articulate these preferences with their provider. Next comes instruction on discussing those goals with their physician during an appointment. Along the way, they’ll notice plenty of family imagery, and inclusion of a patient’s primary care physician and their specialists. This emphasizes that other providers aren’t going away, but rather, the patient is adding palliative care physicians to help them obtain the goals and wishes they establish during PCforMe. Ultimately, the platform is all about engaging patients in their care so they can readily express their wants and needs.

“Once we’ve identified patients who can benefit from palliative care, how do we get them to engage better? PCforMe walks patients through palliative care, how it differs from hospice, and how they can benefit from it, and how to have those conversations with their care team? The hope is to engage patients and caregivers enough to act as champions around their care and carve out what palliative care looks like for them,” says Nicolla.

This tool is also intended to make patients’ family members and caregivers feel more comfortable with their care, too. It can be especially beneficial when navigating feelings of helplessness.

“Caregivers can feel a lack of control or diminished value of what they can do, so what PCforMe offers is having caregivers think about what is important to a patient and how they can support them,” Nicolla says. “Some of the care services — like legal issues or nutritional issues — are things caregivers can latch onto and help their loved one.”

PCforMe recently underwent a clinical trial assessing its usability, patient self-efficacy, and the change in users’ knowledge. With a standard usability score (SUS) of 78.2, well above the industry standard of 68, PCforMe proved to be easy-to-use for the randomized patients who participated. Preparedness for an upcoming palliative care appointment increased by 50% in the intervention group versus 13% in the control group, and even reduced the number of no-shows significantly. PCforMe’s self-efficacy score was -2.2 versus -1.7 for the control. Overall, it’s a helpful, mobile platform for patients.

“The SUS tests to see how user-friendly the software is, so we were pleased when putting it in front of patients, we could just drop it in their lap, and it scored highly. The change in knowledge tests for how much more were patients engaged around palliative care versus what we would see from static websites available to the public, like palliativecare.org. Self-efficacy measures if patients actually do feel more prepared and ready to engage with their care team,” Nicolla explains. “Anecdotally, the feedback during the clinical trial included how easy it was to navigate, and how it gave patients time to think about what they wanted out of palliative care. The activities they engage with helps to frame their preferences and goals, so it gives them an opportunity to reflect on what’s important when planning the next weeks, months, and years on their serious illness journey.”

PCforMe is available to patients and providers connected via Acclivity Health’s platform. For more information on how to use PCforMe to engage your patients, call 904.562.1368 or email info@8kw.3ce.myftpupload.com.

“Hopefully patients can engage more with what palliative care services mean to them,” says Nicolla. “They can familiarize themselves on what palliative care looks like, and family members and providers can make use of some of these quality of life services patients may not realize exists. It dispels the myth that palliative care is end-of-life care.”