Advance care planning for patients with advanced CKD: a need to move forward.

For well over a decade, we have known that dialysis patients and their families and friends desire opportunities to engage in advance care planning with their nephrologist and dialysis teams (1–3). Clinical practice guidelines have recommended advance care planning as central tenets of dialysis care and CKDmanagement (4) and prominent nephrology societies have embraced this aspect of clinical nephrology as a priority, recommending that practitioners “do not initiate chronic dialysis without ensuring a shared decision-making process between patients, their families, and their physicians”(5). In theirwell conducted qualitative study of advance care planning in 13 dialysis patients and nine families/friends, Goff et al. identified three major themes: (1) lack of experience in advance care planning with nephrologists and/or dialysis teammembers, (2) life anddialysis experiences aswell as patient traits and relationshipswith family and friends influence advance care planning, and (3) patients want nephrologists to lead advance care planning discussions and peer mentorship through this process would be welcome (6). Goff et al. also provide interesting patient reflections and information on perceived disenfranchisement among patients with less education and lower socioeconomic status. Eachof these themes confirmspriorwork in CKD (1–3) and is consistent with a recent systematic review of the contextual factors influencing the uptake of advance care planning in general palliative care (7). The work by Goff et al. should be commended as a key element in end-user/stakeholder engagement at the local level necessary for the development and implementation of a successful advance care planning program. Such engagement will also need to extend to staff, advance care planning facilitators, and administrators to ensure that advance care planning initiatives are responsive to specific site-identified needs. Clearly, to enhance the implementation of advance care planning, local contextual factors influencing its uptake need to be understood. However, the focus of future research needs to be on establishing frameworks for implementing and evaluating advance care planning among patients with advanced CKD. Goff et al. suggest that patient experience with death or severe illness in a family member may facilitate advance care planning (6). A study of 43 in-center hemodialysis patients in the 1990s failed to show that experience with potentially life-threatening illness in thepatientor a family member influencedcompletionofadvancedirectives,asurrogate end point of successful advance care planning (3). However, in the 1990s, Perry et al. identified personal experience with death as a factor increasing the comfort of dialysis healthcare providers (nurses, social workers, physicians) with advance care planning discussions (8). Thus, although personal experience might encourage staff to engage in advance care planning, we lack evidence showing that such experiences result in positive outcomes. This disconnect holds true for many of the perceived facilitators and barriers to advance care planning and reflects uncertainty as to how programs can best operationalize advance care planningprograms to capitalize on facilitators or mitigate barriers. Moreover, there is no consensus on a comprehensive evaluative strategy of advance care planning. Patients believe that nephrologists should lead advance careplanningdiscussions,butmostdialysispatientsreport never engaging in such discussions with their nephrologists (1,3,6). In 2006, only 39% of surveyed American and Canadian nephrologists reported feeling very well prepared to make end-of-life decisions with patients (9). Most nephrology trainees report little education in palliative care topics like advance care planning (10,11) and few have been observed leading patient-family meetings where such issues are discussed (10,11). Opportunities now exist to train nephrologists in the communication skills that enhance advance care planning discussions (12). However, if an individual nephrologist recognizes the importance and need for such skills, shouldn’t he or she independently seek to acquire those skills ordevelopa process whereby someone in the dialysis unit who is interested and capable leads efforts in this clinical area of care? It is difficult to believe that nephrologists remain unconvinced about the importance of engaging in advance care planning with their dialysis patients. We need studies of successful ways to implement effective, ongoing advance care planning for dialysis patients. It is time to study the implementation and effectiveness of advance careplanning inCKDpatients and their families and loved ones. How can we more effectively makeadvancecareplanningpartof routinecare indialysis units? Are peer mentors the answer for some units, as demonstrated by Perry et al. 10 years ago (13)? Can dialysis unit nurses or social workers assume the role of trained facilitators, a method shown to be effective for increasing advance care planning (14)? Although nephrologists are integralmembers of the team in the advance care planning process, if they have done an effective job, *University of Illinois, Urbana-Champaign, Illinois; Nephrology, Carle Physician Group, Urbana, Illinois; and University of Alberta, Edmonton, Alberta, Canada