Talking to Patients About Chronic Kidney Disease

One of the first things to do with a newly diagnosed chronic kidney disease (CKD) patient is to sit down and talk to them about their disease. Better outcomes can be achieved when patients understand their situation, know what is at stake, and trust their doctor’s treatment recommendations. 

“Heightened emotions can impede a patient’s ability to comprehend and retain information,” says the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK) on its web page, “Talking With Your Patients About Kidney Disease.” 

Therefore, to have a meaningful and effective conversation, it is important to establish what the patient knows, doesn’t know, or thinks they know about CKD and assess their state of mind—that is, their ability and willingness to have a conversation.

In our Kidney Health Management program, Healthmap Care Navigators work directly with CKD patients to help them understand their situation and comply with their treatment. This article is based in part on techniques recommended by the NIDDK, combined with the real-world experiences of Tracy Sherwin, RN, BSN, BHS, one of Healthmap’s Care Navigators.

What to talk about

Let’s say a patient has been diagnosed with CKD stage 3. At this point, it’s important to focus on avoiding or slowing the progression of their CKD. The patient’s primary care provider, nurse practitioner, or another qualified staff member should be discussing the following topics with their patient:

• An overview of kidney function. Most people may vaguely associate kidneys with urinary function but may not be aware of their filtering and regulating activities. They will need a basic overview of kidney structure and function in order to grasp the significance of their CKD.
• The nature, cause, and impact of CKD. Provide a general explanation of how easily kidneys can be injured; the gradual, silent or asymptomatic nature of kidney disease; and how diminishing kidney function can affect other organs and the patient’s overall health over time.
• Why this patient has CKD. Depending on the patient’s history, explain how comorbidities such as diabetes and high blood pressure, as well as choices such as smoking and alcohol consumption, can promote CKD. Be careful not to put the patient on the defensive.
• The treatment approach. Provide specifics on the course of treatment, including the medications involved and what they do. Explain what a nephrologist does and discuss a referral when appropriate.
• What living with CKD will involve. Discuss the likely impact of CKD treatment on the patient’s work and family life. Talk about the recommended or necessary diet and lifestyle changes. Try to identify the presence of any social determinants of health that might get in the way of treatment.
• The long-term outlook. Talk about the expected outcome and emphasize that if the patient stays with the course of treatment and makes necessary changes, they can expect to live a reasonably normal life.

This is a lot of information for a patient to digest, and it must be presented in a way that will not overwhelm them. In fact, the goal is to gently instill both an understanding of the serious nature of their disease and the confidence that their CKD can be managed.

How to approach the patient

Talking to a patient about their CKD is a delicate balancing act. You don’t want the patient to become more confused, frightened, or depressed than they may already be. However, you shouldn’t downplay the importance of taking action to stop or slow the disease’s progression.

Healthmap Care Navigators are registered nurses with a great deal of experience in working with CKD patients in our Kidney Health Management program. In addition to supporting patients with their CKD and comorbidity management, Care Navigators also assist patients with overcoming barriers to care by connecting them with community-based resources. According to Care Navigator Tracy Sherwin, RN, BSN, BHS, it’s important that patients see her as a trusted coach and understand that she’s on their side. This is especially helpful for patients who have recently been diagnosed and may be experiencing denial or confusion about their condition.

Tracy says, “Tread lightly. You’ve got to understand where they want to meet you on the subject. If you are simply telling them what to do, they’re not going to want to work with you. You must meet them on their terms if you want success.”

Sometimes, newly diagnosed CKD patients feel that their health is out of their control. Tracy emphasizes the importance of setting goals together and focusing on what the patient can control. “Ask the patient what they want to work on to help their health. It could be something as simple as drinking more water,” she said. “I want them to feel like we are working together to come up with a plan that works for them and their lifestyle.”

Lead, don’t push

You’ll need to get to know the patient and understand how they’re handling their diagnosis. NIDDK recommends the Ask-Tell-Ask approach. Lead with questions that will allow you to assess the patient’s perspective on CKD, tell them what they need or want to know, then ask them to respond (with their own questions) to what you’ve said.

Here are some examples of questions to ask newly diagnosed patients:

• “What have you been told about your kidney problem so far?” (in case the diagnosis came from a source other than the PCP)
• “Do you know what the kidneys do?”
• “Have you known anyone with kidney disease?”
• “How have your loved ones reacted to the diagnosis?”

You can even lead the conversation with a general “How are things going?” question, which could point to issues in their life that may affect their receptivity, such as financial stresses or job challenges.

In asking questions, especially open-ended questions, you are effectively getting the patient’s permission to speak about the subject. Their responses will allow you to appropriately frame the information you present.

As the opportunities for discussion present themselves, share the information they need in simple terminology. What you tell them should have as few technical terms as necessary. Respect the patient, though, and never talk down to them.

After you’ve shared the information, be sure to allow the patient to ask any questions they may have to foster a two-way conversation. Be aware, though, that many patients do not feel comfortable asking questions. Don’t mistake this reluctance for understanding. If you sense this, ask a follow-up question to check their understanding.

An important advantage of the Ask-Tell-Ask approach is that it helps to build rapport with the patient. It also emphasizes that you are there because you care about them, not just to deliver instructions. It also establishes a dialogue that will help the patient feel like a leader and partner in their treatment.

Recognize their emotional state

A patient’s emotions play a big role in their ability to process medical information. That’s why it is important early on to understand how the patient is reacting emotionally to their CKD diagnosis. This is especially important if the patient was surprised by the diagnosis—for example, if it was delivered to them in an urgent care setting while they were being treated for an unrelated issue.

“Acknowledging and validating emotional responses helps patients to gather themselves,” says the NIDDK. “It also strengthens the clinician-patient relationship through demonstrating empathy and support.” This can help patients feel more prepared to receive and discuss serious news.

NIDDK recommends the NURSE approach for dealing with patient emotions:
Name the emotion (e.g., “I can see that you’re very stressed about this...”)
Understand the emotion (“It’s natural to feel this way in an unfamiliar situation...”)
Respect the patient (“I’m completely confident that you can handle this...”)
Support the patient (“This is something we’re going to tackle together...”)
Explore the emotion further (“Can you think of any other reasons you may be feeling this way?”)

NIDDK also recommends that clinicians treat the patient’s emotional responses (verbal and non-verbal) as clinical data and keep a record that may prove of value in treating the whole patient.

While these techniques are presented separately for discussion, keep in mind that they are actually an integrated process that will help the clinician understand the patient’s point of view and how to present treatment information.

Healthmap’s part in the conversation

There are some topics that the patient may not want to discuss with their doctor. In addition, issues may arise that the patient won’t realize influence treatment. Healthmap Care Navigators are valuable resources to both patients and clinicians and can provide patient support between doctor visits. They extend the practice’s reach and capability without adding administrative burden.

Care Navigator Tracy Sherwin says, “It’s like having a nurse in your back pocket you can call anytime. On my regular phone calls with patients, we discuss how they’re doing with medications, upcoming appointments, and the progress they’re making. As we get to know each other, they open up to me about other things in their life that I can sometimes help with.”

Tracy noted that “My patients become like family to me, and I think it really helps them to know they have a knowledgeable friend they can easily reach just any time, for help with almost any concern. It’s about treating the whole person.”

For more on Healthmap’s NCQA-accredited Kidney Health Management program, visit www.HealthmapSolutions.com.

We Are Passionate about improving kidney disease outcomes. We Are Healthmap!