Hope: An Essential Prerequisite for Health Literacy in Chronic Kidney Disease

Hope Abides

Hope abides; therefore I abide.

Countless frustrations have not cowed me.

I am still alive, vibrant with life.

The black cloud will disappear,

The morning sun will appear once again

In all its supernal glory.

—by Sri Chinmoy Ghose

Have you ever sat in your examination room with a patient and the patient’s care partner and explained the progression of chronic kidney disease (CKD) and the ESRD treatment options for a second, third, or fourth visit in a row, watching your patient’s eyes glaze over when you say “dialysis,” while the partner’s eyes widen with fear? Does it feel as if your words aren’t getting through? You’re right. Your patients are shell-shocked: devastated by emotions, panicked, and feeling hopeless about their futures. We call it denial.

Terrified patients can’t learn. Education researchers have noted, “Humans act emotionally before the conscious awareness of emotion can occur; we react before we know we are reacting. ‘A traumatized person in a state of alarm is less capable of concentrating, more anxious, and more attentive to nonverbal cues such as tone of voice, body posture, and facial expressions’” (1).

The good news is that you can help your patients through their fears—by starting with hope.

The value of hope

The literature on hope offers some useful hints as to how we can help patients adapt, including setting and moving toward personal goals:

  • A meta-analysis of studies of hope in family members of people with chronic illnesses (2) found that a key hope was “transitional refocusing” from a difficult present to a positive future. The sources for hope shift as the patient’s circumstances change and the timelines shrink. If a patient worsens, the focus might become hope for a good day versus a bad one.
  • Among patients with chronic illness, a qualitative study (3) found that hope encompassed three types of dynamic work: 1) shifting perceptions of mortality from horror toward peaceful acceptance, 2) replacing uncertainty with recognition and reconciliation (i.e., knowledge conquers fear), and 3) establishing a go-ahead-spirit identity versus resignation.
  • The only CKD-specific study of hope enrolled 103 dialysis patients in the United Kingdom (4), finding that those who self-reported higher hope levels on the trait hope scale were less anxious and depressed, felt less burdened by CKD and its treatment, and had better mental functioning on the Kidney Disease Quality of Life-36, which predicts reduced morbidity and mortality (5). This suggests that hope is literally a matter of life and death.

How to address the emotion and implement hope

In a perfect world, you as a clinician convey a vital self-care message to your patients. They must care for themselves: take multiple medications, eat differently, get a dialysis access, choose a modality, or identify a living donor for preemptive transplantation. Ideally, the patient agrees and takes on the positive actions that only he or she can do.

This ideal scenario does not tend to occur, unfortunately. All too often, these well-intentioned conversations (the hardest part of being a nephrologist, we learned in an unpublished interview study), focus on the medical and clinical nature of the disease—symptoms, lab test results, medication adjustments—and don’t address patients’ fears. Some typical concerns of people with CKD include these:

  • Am I going to die?
  • Will I be able to keep my job?
  • Will I be a burden on my loved ones?
  • Will my partner leave me?
  • How will I pay for this?
  • Will life “on a machine” even be worth living?

Consider using this list of examples to reassure your patients. For example:

  • “People often worry that when their kidneys fail, they will die. Fortunately, we have treatments that can help you live, and you can still have a good life.”
  • “If you are working, you can choose a treatment option that can let you keep your job.” (Social Security Disability Insurance usually replaces only about 30 percent of a work salary; that is not an optimal solution.)
  • “Fortunately, Medicare can help you pay for kidney failure treatment at any age, if you are a US citizen and have worked enough to qualify.”

A second approach is to ask your patients what is going through their minds when you give them this news. What do they worry about? What matters most to them? You can get to know your patients and then fine-tune your messages so they feel heard and reassured simultaneously. If you chose nephrology because of the opportunities for long-term relationships with patients, learning their motivations can be rewarding for both you and them. Consider pointing your patients to the nonprofit Medical Education Institute’s free online decision aid at www.mydialysischoice.org. This tool can show you their values and help you assess which dialysis options offer them the best fit and realistic hope for a good life after kidney failure.

References

1. 

Shuck B, Albornoz C, Winberg M. Emotions and their effect on adult learning: a constructivist perspective. In: Proceedings of the Sixth Annual College of Education Research Conference: Urban and International Education Section, edited by Nielsen SM, Plakhotnik MS. Miami, Florida International University, pp108–113. http://coeweb.fiu.edu/research_conference/

2. 

Duggleby W, et al. Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res 2010; 20:148–158.

3. 

Schaufel MA, Nordrehaug JE, Malterud K. Hope in action—facing cardiac death: a qualitative study of patients with life-threatening disease. Int J Qual Stud Health Well-being. 2011;6. doi: 10.3402/qhw.v6i1.5917.

4. 

Billington E, et al. Does hope predict adjustment to end-stage renal failure and consequent dialysis? Br J Health Psychol 2008; 13:683–699.

5. 

Mapes DL, et al. Health-related quality of life as a predictor of mortality and hospitalization: the Dialysis Outcomes and Practice Patterns Study (DOPPS). Kidney Int 2003; 64:339–349.