Every day, patients with late-stage chronic kidney disease or end-stage renal disease and their families must make important decisions about issues that could impact their life with kidney failure (Figure). These critical decisions are best achieved through deliberation and discussions with diverse groups, including the health care team, the patient and the patient’s family. Managing patients’ choices requires education from the health care team to help patients achieve informed choice.
Unfortunately, most patients who initiate dialysis are not appropriately educated. Although CMS added kidney disease education services as a Medicare Part B-covered benefit for Medicare beneficiaries diagnosed with stage 4 chronic kidney disease (CKD), nephrology practices have been slow to implement these education visits. It is important for these practices to decide how to best accomplish their CKD education goals, in the context of advancing the patient experience, improving patient outcomes (ie, avoiding poor choices like a central venous catheter, preserving residual renal function and controlling a patient’s risk factors) and controlling costs. As Porter and Lee noted in Harvard Business Review, these requirements will become more critical in a value-based health care payment system.
Without adequate education, patients often slide into default treatments. In the United States, the in-center hemodialysis default practice often functions as a significant deterrent to home dialysis, which could be a better fit for many patients. Defaults can even play a role in the number of available kidney donations: Many people avoid making the active choice of being an organ donor if their state or national policy’s default is to be a non-donor. In Germany, no one is an organ donor by default; citizens must opt in to the donor pool, and only 12% of Germans have joined.
On the other hand, in neighboring Austria, all citizens are placed in the donor pool by default and can easily opt out. Surprisingly, Davidai and colleagues found that 99.98% of Austrians have stayed in the pool. In other culturally similar countries, we see the same staggering trend. As important and personal a decision as organ donation is, national or individual attitudes are apparently not as powerful in guiding people’s donor decisions as is the prevailing default policy, according to Thaler and Sunstein.
Comprehensive education programs (CEPs) with multi-touch platforms can help mitigate these default choices (and are more impactful than individual education sessions). With CEPs, patients are more inclined to make an active-choice decision rather than receive a default treatment modality (ie, actively choose home dialysis rather than passively starting on in-center hemodialysis, according to Shukla and Easom.
Barriers to CKD education
Lack of education preparedness for patients with CKD is in part due to the delayed referral to nephrology specialists, although even a considerable number of patients who have received more than 1 year of kidney specialist care prior to initiating dialysis are also inadequately prepared. For example, Kurella and colleagues found that more than 80% of patients in the United States initiate hemodialysis therapy with a central venous catheter, which is associated with significantly greater rates of infection and long-term complications than a permanent vascular access or peritoneal dialysis catheter.
In addition to delayed specialist referrals, providers may limit CKD educational efforts because of:
- lack of time and clinical confidence;
- competing education priorities;
- and confusion about diagnosing CKD.
At the system level, education may not be a focus due to:
- a lack of provider incentives;
- limited availability of practical decision support tools; and
- a lack of established interdisciplinary care models inhibit patient education.
Despite these barriers, innovative education approaches for patients with CKD exist, including self-management support, shared decision-making (SDM), use of digital media, and engaging families and communities. Education efficiency could be increased by focusing on people with progressive disease, establishing interdisciplinary care management, including community health workers, and providing education in group settings, as found by Narva and colleagues.
The continuum of medical decision-making models has historically been anchored at one end by authoritative decisions made by physicians who direct the care of their patients. At the other end of the continuum lies informed choice, in which patients make the decisions after physicians provide them the information through educational efforts. Between these two extremes lies SDM, which represents a partnership between the physician and the patient, with neither party solely responsible for the decision. It is increasingly apparent that SDM could have a significant impact on longer-term outcomes for patients with end-stage renal disease (ESRD).
While the Center for Medicare & Medicaid Innovations attempted to test the SDM model, this request was recently cancelled because an insufficient number of accountable care organizations were interested in participating. The SDM consultation model was based on an in-person discussion with an SDM beneficiary during which the SDM practitioner would:
- consider available treatment options with the SDM beneficiary;
- describe the pros and cons of available treatment options to the SDM beneficiary;
- help the SDM beneficiary form personal preferences related to available treatment options; and
- listen to, and answer questions regarding, the SDM beneficiary’s treatment decision.
Shared decision-making often involves the use of patient decision aids — which may include written materials, computer-based tools, DVDs or videos — that help patients learn about and evaluate their treatment options, as well as articulate their preferences when discussing the issues. These approaches could be helpful in addressing the cognitive alterations observed in patients with CKD transitioning to ESRD, according to Jayanti and colleagues.
Embrace patient-centered care
As more health care organizations embrace the key concepts for patient-centered care, O’Hare and colleagues we need to continue to examine interventions that can improve the adoption of SDM by nephrology practices. These include efforts to:
- reduce overuse of options not clearly associated with benefits for all;
- enhance the use of options clearly associated with benefits for most;
- reduce unwarranted health care variations;
- foster the sustainability of the health care system; and
- promote the right of patients to be involved in decisions concerning their health, according to Da Matta and colleagues.
It is important to remember that in-center hemodialysis should not be viewed as a default therapy for all patients with advanced kidney failure. With SDM discussions, patients can determine whether home dialysis, palliative dialysis or no dialysis are acceptable options. As such, before the initiation of dialysis, patients and their families should be informed about the benefits, burdens and alternatives to dialysis; what dialysis treatment will involve; what the experience of being on dialysis might be like for them; and how it might affect their life and the lives of their family members, according to Song and colleagues.
It is imperative for all medical professionals and government bodies to act to ensure patients are receiving the education they need to make the right decisions. This upholds the Hippocratic oath that guides how we should practice each day.
Da Matta SM, et al. Cognitive alterations in chronic kidney disease. See comment in PubMed Commons below J Bras Nefrol. 2014;36(2):241-245.
Davidai S, et al. Proc Natl Acad Sci USA. 2012.doi:10.1073/pnas.1211695109.
Jayanti A, et al. BMC Nephrol. 2015;doi:10.
Kurella TM et al. Kidney Int. 2014;doi:10.1038/ki.2013.369.
Narva AS, et al. Clin J Am Soc Nephrol. 2016;doi:10.2215/CJN.07680715.
O’Hare AM, et al. Clin J Am Soc Nephrol. 2014;doi:10.2215/CJN.01930214.
Porter ME, Lee TH. The strategy that will fix health care. Harvard Business Review. October 2013:1-19.
Shukla AM, et al. Perit Dial Int. 2017;doi:10.3747/pdi.2016.00270.
Song MK et al. Nephrol Dial Transplant. 2013;
Thaler RH, et al. Nudge: Improving decisions about health, wealth and happiness. 2009. Yale University Press.