Managing a chronic illness requires a lifetime of learning

Looking toward the next 30 years of treating kidney disease

Editor's note: Nephrology News & Issues is celebrating 30 years of publishing this year. In this series, we are looking to the future. How will treating kidney disease change in the next three decades?

Stepping out of traditional paternalistic medical practice is a challenge for both patients and health care professionals. “Think differently” is the famous Apple advertising and corporate mantra whose time has come for the renal community. This mantra needs to be adopted whether patients are newly diagnosed with chronic kidney disease or if they are long term patients or health care providers.

I know that it is easier said than done.

The behavioral change of “thinking differently” involves life-long learning for all parties involved. Seasoned health care professionals may be leaning back in their chairs, thinking: ”So, enlighten me! Tell me something new!” Standard medical practice dictates that the medical team tells the patient what to do to fix or manage the problem or issue at hand. The patient is expected to be compliant.

A more innovative approach would be to engage the patient: “What is your priority for your health care or medical regimen? What are your future goals and plans for your life? What are your strengths and weaknesses in dealing with your health? Have you ever followed a diet or had medications to take on a daily basis?

As a patient, I have only been asked my opinion once, and that was from a new traveling nurse. I was shocked and relieved by the question she asked, “Ms. Castillo, what would you like me to do? How would you like me to do this procedure?” For once, I was not going to be worked on and fitted into the assembly line of tasks to be completed. Her question made me feel like she was listening and willing to work with me to get the lab work and assorted tasks completed as a team. Together we could create an action plan in preparation for the next month’s review.

Be a participant

Of course, this is a two-way street. If given the opportunity to participate, patients need to get involved. Treatment can only be effective if it includes the patient and motivated friends and immediate family or household members actively engaged in the process. For daily problem solving, the health care team is a guide for what needs to be done and ideally, what to expect. The team can also be a resource to answer questions as they arise. An integral part of this process encompasses learning the language of CKD from clinical terms to insurance jargon and asking for work and accommodations when needed, especially for eating out, transportation, and travel.

Share the resources

Taking the time to make learning a priority is part of successful and effective treatment. Finding resources are crucial to support the efforts of the health care team and the emotional needs of the patient and family or household. Websites with patient and health care team videos designed for learning are an excellent source to start the education process. Often these websites will include references to education meetings, blogs, and hotlines to answer questions. Personal connections with fellow patients, friends, and family members makes all the difference. These relationships emphasize that patients and family are not alone and are part of a larger community.

Chronic illness management, like chronic illness treatment, is as much an art form as it is science and standard medical practice. It is an even more delicate balance once CKD progresses to dialysis. There is no day off or week off for good behavior to enjoy your healthy and carefree lifestyle once again. CKD is a marathon vs. a sprint. It is an endurance sport that takes stamina, persistence, and resilience for all parties involved.

Think differently by including lifelong learning. Granted, it takes more time, energy, and patience, but is worth it in the long run for the patient and the larger renal community. The educated patient is healthier and more independent, with the skills necessary to meet the challenges of a chronic illness that has a major impact on all facets of life. -by Jennifer Castillo