Is the End in Sight for the “Don’t Ask, Don’t Tell” Approach to Advance Care Planning?

As evidenced by the extended presence of books like Being Mortal by Atul Gawande and When Breath Becomes Air by the late Paul Kalanithi on the bestseller lists (1), it is clear that there is increasing public awareness and interest in end of life care and values-based medical decision making. Accompanying this increase in public interest is a growing recognition of the importance of advance care planning (ACP) and documentation, in particular for patients with serious illnesses. The outcomes of interventional aggressive care in those patients with a heavy burden of chronic illness have been shown to (1) result in distress in bereaved families (2), (2) cause moral distress in health care professionals (3,4), and (3) escalate costs without an accompanying measurable benefit to patients’ survival or quality of life at the end of life (5).

High-quality conversations about values and goals, a crucial component of ACP, require time and skill on the part of health care professionals. A recent review by Lakin et al. (6) identified multiple barriers to communication in primary care, including deficits in prognostication skills. Many older studies in the literature have failed to show improvement in ACP or ACP documentation, despite intensive effort (7), and more recent studies confirm that poor rates of documentation of ACP persist (8). Fortunately, some more encouraging recent initiatives, such as the Respecting Choices program (9) and the Serious Illness Conversation Guide (10), have reported improved rates of documentation and associated improved outcomes (R. Bernacki et al., unpublished data).

In this context, the paper by Kurella Tamura et al. (11) in this issue of the Clinical Journal of the American Society of Nephrology offers hope that, despite all of the barriers to ACP, patients whose health care teams make the effort to engage, document ACP, and identify surrogate decision makers have an associated reduction in intensity of invasive treatment at the end of life. Kurella Tamura et al. (11) examined a large 2006–2007 cohort of decedent nursing home residents using the federal Minimum Data Set (MDS). They compared prevalence of advance directives and identified surrogate decision makers for a group of dialysis-dependent patients versus a cohort of patients with other serious illnesses. These results add to growing evidence that, despite poor prognosis, patients on dialysis have particularly low rates of documented advance directives and identification of surrogate decision makers (12–14). However, within the renal cohort, the presence of an advance directive, identified surrogate decision maker, or particularly, both is associated with lower intensity of end of life care, fewer hospitalizations, and higher rates of discontinuation of dialysis.

Unfortunately, the authors of this study were limited in the level of detail available in the MDS about the ACP process and conversations that occurred with this cohort of patients. Although all patients had complete data for do not resuscitate orders, there was incomplete information on other treatment limitations and/or presence of a surrogate decision maker. No narrative information regarding patient values and priorities exists in the MDS database, which was developed to ensure safety in nursing homes and therefore, focuses on these measures rather than patient values.

Best practices in discussing goals of care include the following: sharing prognostic information, eliciting decision-making preferences, understanding fears and goals, exploring views on tradeoffs and impaired function, and wishes for family involvement (15). In October of 2015, the Centers for Medicare and Medicaid Services, recognizing the value of promoting ACP conversations, added specific billing codes to reimburse physicians for conversations about ACP; the aim of this policy change was to incentivize clinicians to spend time discussing patients’ care preferences and plans. ACP, above all, takes time, often more time than most physicians have to give, especially because episodic “rescue-oriented” care provided by many subspecialties (16) is rewarded more in our current system than longitudinal relationships and primary care. However, here is the conundrum: nephrologists and renal teams typically see patients on dialysis in nursing homes three times a week for the duration of their lives, arguably providing an ideal opportunity for longitudinal, unhurried conversations about what matters in the end with patients that we often get to know quite well. It is, therefore, particularly disappointing that renal patients fare so poorly compared with patients who have other chronic illnesses with better prognoses. The reasons for this difference are likely complex, but it may be that nephrologists simply do not know what to say or how to say it. Although some training programs in best practices in communication exist for nephrologists, such as NephroTalk (17), most nephrologists have not had access to this type of intensive training (18).

Electronic health records (EHRs) can either further disrupt or facilitate the ACP process in patients on dialysis depending on how well they are designed (19) and the degree to which this documentation is available in different care settings. A well designed EHR interface can facilitate the conversations, providing key information from which to launch directly from a previous discussion into discussing the patient’s current health status. Indeed, having these deeply meaningful conversations with patients is a powerful antidote to the despair and burnout in physicians that has been shown to be associated with the ascension of EHR tick boxes in the practice of medicine (20,21).

The results of this study are for a cohort from 2006, and since that time, there has been escalating interest in improving ACP processes for renal patients (22,23). In fact, a recent review outlined best practices in conducting serious illness conversations and offered solutions to overcome barriers as well as practical advice, including specific language and tools, to implement serious illness conversations in the dialysis population (24). Nephrologists practicing now would do well to view the work by Kurella Tamura et al. (11) as evidence that we need to challenge ourselves and support each other to keep improving the way that we engage in and document ACP with our patients.

Disclosures

None.