The Importance of Hope in Kidney Disease and Dialysis

A couple of months ago I was delighted to participate in an excellent 2-day workshop—in person!—on patient-centered outcomes. The event was well-organized, stimulating, and pulled together a terrific, diverse group, including several people with kidney disease. I think everyone left feeling good about the potential for good to come out of the findings. But, one thing about that experience in my work group troubled me: a dismissal of hope.

Hope is the most important first message we can give patients. Why? Because people diagnosed with a life-threatening illness are anxious and terrified—and we humans cannot learn when we are afraid.¹ We can’t form new memories when cortisone and adrenaline are surging, so we can’t effectively take part in shared decision-making—so the easiest thing to do becomes to “let professionals take care of me.” This dynamic is a leading reason, I suspect, for why about 85% of incident—and prevalent—Americans on dialysis still use standard in-center HD.² Since a leading cause of death on dialysis is choosing to stop the lifesaving treatment, allowing for the right fit of treatment option to lifestyle and values is life-saving. Hope makes finding that fit possible.

Research suggests that hope is the flip side of fear.³ Being hopeful allows the alarm to subside, at least a bit, so learning can happen. Thus, hope can be the antidote that makes it possible to begin to engage actively in health care despite a scary diagnosis.

In the work group, nephrologists conflated hope with the false hope of telling people their kidney disease “would just go away on its own.” Not so! Hope does not have to be unrealistic. There are two forms of hope.⁴ Generalized hope is a belief in a “beneficial yet uncertain” future. Particularized hope is linked with the ability to achieve certain goals. There wasn’t time to address this during the meeting, so this post is my chance to set the story straight about the vital need to offer hope!

Let’s look at the studies with, say, 50 or more participants, that assess hope and important outcomes in people who have kidney disease or kidney failure. (There aren’t many):

1. Adult dialysis patients in five UK clinics completed questionnaires about hope, emotional support, locus of control, hospital anxiety/depression, and the KDQOL-36. ⁵ The findings?

• Hopefulness predicted adjustment to kidney failure and dialysis.

• Hope reduced anxiety, depression, effects and burdens of kidney disease, and improved mental health quality of life.

“Hopefulness,” wrote the authors, “could serve to lessen the emotional impact of ESRF and treatment, by empowering the individual to reframe threats as challenges.”

2. In Iran, 50 HD patients were assigned to a hope therapy or placebo group.⁶ Hope therapy was eight weekly 60-90 minute sessions during treatment; the placebo group had eight sessions of a non-specific intervention. The findings?

• The hope therapy group had significantly less depression, anxiety, and stress.

• The placebo group had no change.

What was the hope intervention? The sessions normalized emotions in HD, discussed the role of hope, asked participants to share their life stories and observe when they had been hopeful, looked at their hope factors and pathways, discussed times of hopelessness, set goals, and helped identify strategies to reach goals.

3. Also in Iran, a cross-sectional study analyzed survey data from 120 HD patients, including a spiritual well-being scale, the Herth Hope Index, serum phosphorus and potassium, and fluid weight gain.⁷ The finding?

• Hope and spiritual well-being were significantly associated with dietary adherence.

4. In Jordan, researchers looked at hope and quality of life in 123 dyads of adult HD patients and their care partners (246 people).⁸ Participants took the Herth Hope Index and the World Health Organization BREF survey of quality of life. The findings?

• Each individual’s hope scores predicted their own better quality of life scores.

• Patients’ hope scores predicted better Environmental domain quality of life in family caregivers.

“All domains of quality of life of patients and their family caregivers are related to their own level of hope,” concluded the authors.

5. In Japan, 461 adult patients with non-dialysis CKD or on HD or PD completed the health-related hope scale (HR-Hope) and items from the KDQOL, and assessed treatment adherence from medical records.⁹ The findings?

• The less burdensome the fluid and dietary restrictions, the more hopeful people were.

• Participants with higher Hope scores had lower systolic blood pressure.

• Hope scores fell as non-dialysis CKD progressed—with stage 5 prior to dialysis as the lowest point.*

*Note that hope is at its lowest ebb when the fear of starting dialysis is likely at its highest…

6. Also in Jordan, 202 people on dialysis completed the Herth Hope Index and the WHO QOL-BREF.¹⁰ The finding?

• Higher hope scores were associated with better quality of life.

7. In a 7-year study in the U.S. South, 569 African American people with non-dialysis CKD completed an optimism scale, self-reported health behaviors (alcohol use, smoking, physical activity), and had their CKD progression measured.¹¹ The finding?

• Higher optimism was associated with a lower chance of rapid CKD progression.

What can we learn from this research?

• All of the studies were small, and just one randomly assigned patients to an intervention or control group: this wasn’t the highest level of evidence. Yet, the notion of hope vs. fear has face validity. Who among us hasn’t experienced this in our own lives?

• Flip these findings around. Are hopeless people able to engage effectively in their care and produce good health outcomes? Of course not! This is likely why optimistic people could slow CKD progression…

• Hope improves mental health quality of life—which reduces hospitalization and death.¹² This means that hope is, literally, a life-and-death prospect.

How Can We Offer Realistic Hope to People with Kidney Disease?

A diagnosis of CKD can mean living under a personal black cloud, waiting for the deluge to begin. How far is it possible to plan ahead, knowing that a health crisis is impending, but not knowing when? Is it safe to buy a home or to marry or have children? Any scary illness takes away autonomy, a critical psychological need.¹³ Restoring autonomy—by helping someone to see that they are the only ones who control many key aspects of their treatment (e.g., what they eat and drink, medications they take, exercise) is a way to give people hope.

If the kidneys do fail, people’s goals and dreams are at risk. Particularized hope differs for each of us. The only way to know what is hopeful for each patient is to ask them, “What matters to you?” Once we know someone’s motivation, we can use it as a frame of reference to offer hope specific to their needs. For example, a patient in a Facebook group couldn’t figure out whether to do HD or PD. When I asked him what he loved to do, he replied, “Fix motorcycles!” I suggested that PD might give him more level energy and control over his schedule. He chose PD and it was a good fit. An avid swimmer would likely be happier with a different choice.

How can busy clinicians find time to determine each person’s motivation and match treatments to their individual needs? Handily, we built a free tool to help you operationalize hope for your patients.

My Kidney Life Plan includes ALL treatment options, is grounded in motivational theory, evidence-based, written at a 5^th grade reading level, and starts with values clarification—not scary treatment details. Try it yourself with three values. Try it with your patients on a tablet. Use it in research—and please publish what you find!

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