The Other Half of Informed Consent: Transplant Education Practices in Dialysis Centers

A patient with ESRD has two treatment options: chronic dialysis or kidney transplantation (KT). In order to give informed consent, a patient must understand the risks and benefits of both the proposed treatment and any alternative treatments. As such, all dialysis patients without any absolute, nonmodifiable contraindications to KT should be fully informed about this alternative treatment modality; even though KT is not necessarily immediately available, it may very well be with identification of a live donor, and this search rarely begins before KT education. The appropriate provision of transplant education is not only critical for informed consent, but it is also an important component in helping patients achieve access to transplantation. Of 236,079 incident patients with ESRD across the United States, those who were not informed about KT had a 53% lower rate of access, even after adjusting for potential confounders (1). A number of disparities in the provision of transplant education have been identified, with African Americans, older patients, those without private insurance, and those at for-profit dialysis centers less likely to be assessed for KT; these educational disparities may contribute to the markedly lower access to transplantation observed in these patients (1–7).

Transplant education is often a function of the dialysis center, where patients with ESRD receive most of their nephrology and, in many cases, primary care (8), and where the informed consent discussion regarding dialysis typically occurs. Although Medicare reimburses up to six education sessions for patients with ESRD (9), these must be used to cover all topics related to dialysis initiation and ESRD management, and six sessions may not provide sufficient time for discussion of an important, albeit complex, topic like KT. Prior studies have suggested that the provision of kidney transplant education to patients with ESRD may be inadequate. Providers have reported that, on average, they do not inform 30% of patients about KT within 45 days of dialysis initiation, most commonly because the patients have not yet been assessed (1). However, there are significant discrepancies between patient and provider reports of whether the patient received education about transplantation, with 28% of patients stating they did not receive education about KT even though their nephrologists reported providing it (10). Time spent on education is also important. In a national survey of 906 nephrologists, 81% felt that spending >20 minutes on transplant education was ideal, but only 43% reported actually doing so (11). Although these and other studies support the notion that the quantity of transplant education is lacking, less is known about the quality of such education and what constitutes “informing” a patient about KT, both in terms of what is provided as well as what the patient understands and remembers.

In an important new study, Waterman et al. (12) surveyed staff members, primarily social workers and nurses, involved in providing transplant education at 170 adult, outpatient dialysis centers in the Heartland Kidney Network serving Iowa, Nebraska, Missouri, and Kansas. Participants were recruited from among those who attended an open-invitation transplant education training session, and thus likely had a vested interest in the provision of transplant education at their center. The authors then linked the data from the transplant educator survey to US Renal Data System data on 1558 incident patients at the centers represented in the survey. Specific education practices and what constituted informing a patient about KT varied by center. Most strikingly, only 18% of centers reported detailed discussions about the risks and benefits of deceased and live donor transplantation. Center characteristics associated with providing more information about transplantation included serving a greater proportion of younger patients, nonprofit status, being in an urban location, being located close to a transplant center, and being in an area with Agency for Healthcare Research and Quality socioeconomic status index scores above the median. Centers providing more comprehensive information had a 1.36-fold higher rate of dialysis initiates joining the deceased donor waitlist.

The finding that educators from only 18% of centers reported having detailed discussions about the risks and benefits of KT raises ethical concerns about whether a patient can truly give informed consent for dialysis treatment without receiving information about the risks and benefits of this important alternative treatment option. Although there is no standard definition of what it means to “inform” someone about the option of KT, a discussion of the risks and benefits would seem a minimum requirement. While the authors did not ask participants to detail specific reasons for not providing more comprehensive education, lack of knowledge may have been a component. Despite having worked with dialysis patients for an average of 11 years, survey respondents were only able to correctly answer 50% of general transplant knowledge questions.

KT is a complex topic that changes rapidly, and it is important that those providing the initial education to patients with ESRD are well informed and up to date on recent advances. For example, HIV used to be an absolute contraindication to transplantation; however, since 2000, >800 kidney transplants have been performed in HIV-positive individuals (13). If the person providing the education were not informed about this change, HIV-positive patients might simply be told they were ineligible and never seek or attain access. Similarly, over the past decade, there have been major advances in KT for pediatric patients (14), those aged >65 years (15), obese patients (7,16), and patients with donors incompatible by HLA or blood type, both by desensitization (17,18) and kidney exchange (19). In addition, much more is known today about the incremental risks of live donation (20–22). Formalized systems for training those providing patient education are needed to ensure that the information given to patients is accurate and reflects the latest advances in the field.

One barrier to comprehensive discussions may be uncertainty in quantifying risks and benefits, particularly given the wide variability across patient phenotypes. One way to address this could be the use of tools that allow providers to directly estimate the risk of mortality for a given patient (i.e., based on that patient’s particular phenotype) under various treatment modalities. For example, researchers at Emory University recently developed iChooseKidney, an online risk calculator that provides 1- and 3-year dialysis and KT survival estimates and is currently being evaluated in a clinical trial (23). Another example is a Johns Hopkins University risk calculator used to inform the shared decision-making process of considering deceased donor kidney offers from donors at increased risk of infectious transmission (24). Although these tools are not perfect due to the limitations of risk prediction in the dialysis and KT populations, they can at least facilitate provider-patient discussions and provide a framework for considering risks and benefits.

Although few centers in this study provided comprehensive education about transplantation, the dialysis initiates at those centers had higher rates of transplant waitlisting, a finding consistent with previous studies showing that education is a key component in access to KT (1,2) and that the quality of the education provided matters in terms of patient outcomes. These findings indicate that it is not sufficient to simply “inform” patients about KT; comprehensive, high-quality education is needed to improve access. Interventions to improve access to transplantation and reduce disparities should strive to improve both the quantity and quality of the education provided. Several multipronged interventions that include personalized education components are currently being evaluated in randomized clinical trials (25,26).

This study has several limitations that should be considered. The majority of transplant educators who completed the survey were not nephrologists, so it is possible that more detailed discussions about the risks and benefits of KT did occur but were the responsibility of the nephrologist and were thus not captured in this survey. However, given evidence that most nephrologists spend <20 minutes on transplant education (11), it is unlikely that nephrologists fill this gap. The study was limited to 170 centers in the Heartland Kidney Network; thus, the results may not be generalizable to centers nationally. The US Centers for Medicare and Medicaid Services requires that each dialysis center complete an annual facility survey including detailed information about staffing levels, number of beds, and other facility characteristics. Additional questions about transplant education practices, and barriers to providing such education, could be added to a future survey to better understand this problem at a national level and inform interventions to improve the quality of transplant education at dialysis centers.

A patient cannot provide truly informed consent to a treatment without a reasonable understanding of the risks and benefits of both the treatment and any alternative treatments. However, the study by Waterman et al. in this issue of CJASN (12) suggests that very few dialysis centers routinely provide information about the alternative treatment of KT. The development of both a standardized definition of what it means to inform a patient about KT, as well as decision aid tools to communicate this information, could potentially facilitate the provision of comprehensive and timely education about KT. Partnerships between dialysis centers, educators, transplant centers, and patients are critical for the successful development and implementation of educational interventions to improve patient care.

Disclosures

None.