A Guided Journey for Dialysis Patients
Francisco, a retired physician, with his son and living donor, Bobby Tejada. After 1 1/2 years on hemodialysis, Francisco received his transplant on Aug. 22, 2002, at the age of 72. He now enjoys art, travel and ballroom dancing.
It’s easy to assume every dialysis patient has his name on the kidney transplant list. After all, dialysis can require as much as 20 hours a week, interfering with everyday life and putting limits on travel and other routine activities many of us take for granted. Even so, the decision to pursue a transplant is far from easy—especially for patients who are already overwhelmed and often under the weather. An innovative new program aims to provide the support and encouragement they need while they explore the possibility of a life-changing transplant.
Understanding Transplant Decision-Making
The decision to pursue a transplant is typically a multi-stage process, according to extensive research conducted by social psychologist Amy Waterman, PhD, assistant professor of medicine at Washington University. What motivates one patient may not matter to another, and the possibility of a transplant means different things to different people. While transplant isn’t right for everyone, all patients share a common need for accurate information and proactive support. Without it, they may dismiss their eligibility for transplant, content to spend months or even years on dialysis, never fully realizing how their lives might change for the better. Waterman is determined to open their eyes, and she’s starting with their minds.
Working in partnership with Heartland Kidney Network and Barnes-Jewish Hospital, Waterman created and recently launched Explore Transplant, an innovative educational program that guides patients through the transplant “stages of change,” a progression of thought processes about whether to pursue a transplant once eligibility is confirmed. Designed as a program for dialysis center staff to conduct with their patients, the Explore Transplant program is the first of its kind, putting Washington University School of Medicine and Barnes-Jewish Hospital at the forefront of the movement to better educate dialysis patients about their treatment options.
“Choosing to pursue a kidney transplant is no different from making just about any sort of major life change,” Waterman says. “It requires a gradual mindshift, as people explore their options until they find the path that’s right for them.” Many dialysis patients are comfortable in their routine, secure in the familiar surroundings of the clinic. Although that familiar routine has its benefits, it may weaken a patient’s inclination to pursue a transplant—especially in the absence of education and encouragement. Explore Transplant is designed to provide both. The program consists of a set of videos and discussion guides that enable dialysis staff to educate, enlighten and encourage their patients to explore a kidney transplant.
Partnering with Dialysis Centers to Bridge the Knowledge Gap
While dialysis center staff are in prime position to coach patients through an exploration of their treatment options, the majority of them don’t feel knowledgeable enough about transplant to be able to answer patient questions, nor do they have access to good educational materials.
As a result, they aren’t able to fully engage in an ongoing discussion with their patients. And because transplant decisions require steady dialogue and support, patients are too often opting out of transplant by default.
“We’ve found that many dialysis patients aren’t getting transplants simply because they don’t fully understand their options,” explains Jean Bowe, RN, of the Transplant Center at Barnes-Jewish Hospital. “There is much to learn. There are emotional challenges to address and it can be overwhelming, especially for patients who are fatigued or otherwise unwell as a result of their renal condition,” she says. “Our goal with Explore Transplant is to partner with dialysis centers and give them the educational resources they need to motivate patients and ease their journey toward transplant.”
Life Changes Happen in Stages
According to Prochaska’sTranstheoretical Model of Behavioral Change, most of the decisions we make about the way we live require a series of behavioral changes. Take physical exercise as an example. Few people would dispute the benefits of regular exercise, yet not everyone makes it part of their daily routine. People typically progress from one stage of behavioral change to the next at their own pace. Waterman cleverly applied this model to transplant education, based on her theory that the decision to pursue a transplant is something that must happen gradually, the same as any other major life change.
Precontemplation: I’m not ready to do this.
Contemplation: I may do this within the next six months.
Preparation: I’m planning to do this in one month.
Action: I’m currently doing this.
Maintenance: I’ve done this for more than six months.
Whether it’s something as simple as exercise or as complex as a life-changing medical procedure, people tend to follow Prochaska’s model. We are more comfortable moving gradually toward change, and when we’re pushed to take action before we’re ready, we may move backward in our decision-making process. Apply this scenario to kidney transplant education, and it’s easy to see why dialysis patients may resist the idea of transplant if they are pushed too hard or too soon.
“The first thing to do is assess the patient’s readiness to consider transplant,” Waterman says. That assessment is done through informal conversation. As an example, if a patient initially says he isn’t interested in a transplant because he’s afraid it’s risky, he’s in the precontemplation stage.
“Once we know what stage they are in, we can tailor the Explore Transplant educational materials to ensure we’re presenting information in a way that opens the door to consideration,” she says. The program consists of four video modules that dialysis patients watch when the time is right, based on their present state of mind. (There is a video for patients in the precontemplation stage, another video for the contemplative stage, and so on.)
Stage-tailored discussion opens the door for a comfortable conversation between the patient and dialysis staff.
“The videos tend to spark a very natural conversation between the patient and the dialysis staff, even among patients who are normally reluctant to speak up,” Waterman explains. “Patients are able to relate to what they see and hear in the video, and they are awakened to the things in life they may be missing due to the time spent in the dialysis chair.” One patient watched the video in which a transplant recipient talks about being able to travel with his family. When the video ended, the patient shared his own desire to hit the road, acknowledging that his dialysis routine prevented it. It was a real awakening for him, and it moved him one step closer to transplant.
“Our goal is to advance the patient one stage at a time,” Waterman says. “We can’t assume a patient wants a transplant, nor is it right for everyone. Instead, we listen to what they’re saying so that we can determine their stage of readiness, and we start their education from that stage.” Using the Explore Transplant videos and guides, dialysis staff first plant the seed, so the patient is ready to learn about transplant. After watching one or two of the videos, the patient’s ambivalence shifts to active interest. Eventually, when the patient is ready to take action, center staff help the patient take the first step of putting his or her name on the transplant list.
But the program doesn’t end there. According to Prochaska’s theory, the maintenance stage (after the decision is made) requires continuous reinforcement and encouragement. The Explore Transplant program provides for that, too.
In addition to the videos and discussion guides, the Explore Transplant program includes a patient-tracking tool that helps dialysis centers fulfill new requirements for coverage by the Centers for Medicare and Medicaid Services (CMS). Requirements now call for centers to show evidence of transplant education.
As a result of this new provision, and as further evidence of the pent-up demand for easily administered transplant educational materials, Waterman is already receiving requests to extend Explore Transplant to centers outside the Heartland Kidney Network.
“Although we found our launching pad at Barnes-Jewish Hospital, we are prepared to extend this program throughout dialysis clinics and transplant centers across the nation,” Waterman says with characteristic passion for her work. “If we can provide transplant candidates with education that’s tailored to their state of mind, we can give them the knowledge and confidence they need to move forward.” And that’s what Explore Transplant is designed to do for dialysis patients, one self-paced step at a time.