Deciding Not to Dialyze: What Comes Next?

Discussion about renal replacement therapy selection in our patients with CKD is complex, but an important part of any nephrology practice. If we know the patient well, it can be straightforward, maybe even “predictable.” Even in those best-case circumstances, though, the first question must be asked and answered:

“Is dialysis something that you want?” 

This question gets phrased fifty different ways and requires that the patient have at least a basic understanding of what dialysis looks like so that they can weigh the burdens and risks of treatment against the potential benefits. In the end, there are many reasonable people – each with their own story – who decide not to do dialysis.

I don’t know the actual number, but I would estimate that about 5-8% of my patients with advanced CKD have answered “No” when I asked them this question. Invariably, some change their mind, but many don’t. How do you manage those folks?

Recently, I sat with a 79-year-old man and explained what dialysis might look like for him. In addition to his CKD, he has bad heart disease and COPD, now carrying his oxygen with him constantly. The conversation turned to his day-to-day life: what he enjoys, what is hard for him, what his goals are, etc.  As we talked, it became increasingly clear that dialysis would be a huge burden. He and his daughter ultimately decided that no matter what happened, dialysis would not be in his future. This experience was an example of shared-decision making at its best. I felt good about the discussion and the decision.

But what do I do now? What does he want to talk about next? What support can I and the clinic offer him as he struggles with worsening renal failure? These questions around conservative kidney management (sometimes called nondialytic ESRD care, or active supportive care) are the subject of an instructive article by Harrison et al recently published in AJKD.

To try to shed light on this complex topic, the authors set out to have invested stakeholders prioritize identified quality indicators. The stakeholders were divided into two groups: patients and their caregivers, and members of their healthcare team. Obviously, the clinical approach to patients pursuing conservative kidney care varies widely; this prioritization was felt to potentially offer clinical insights about what care might be best as well as how that care can be best delivered. Additionally, identifying and defining measurable process or clinical outcomes allows for reflective practice, be that on an individual level, a practice level, or even within the larger health care system.

The group used a two-pronged approach to help structure their data collection. The authors initially identified topics from the literature that they felt were potential quality indicators within this sphere.  These were divided into specific ‘domains’ that were drawn from the 2015 KDIGO Controversies Conference on supportive care.

Box 1 from Harrison et al, AJKD. Adapted from Davision et al, Kidney International, © 2015 International Society of Nephrology, with permission of Elsevier.

Once the initial set of indicators was identified, patients and caregivers were asked to participate in guided discussions to prioritize those preselected quality initiatives. As the authors moved to the second prong – the providers – the pool of indicators was expanded by querying participants for possible additions. The final list that was used included many possible metrics; it was pruned and prioritized using serial questionnaires (Delphi process) sent to participating care team members.

I think that there is incredibly useful information that can be drawn from both ‘prongs’ of this work, as well as from the comparison between the two groups. Some of it is not necessarily surprising; for example, patients and their caregivers prioritized “a peaceful death.” Other identified priorities among the patient and caregiver group, though, I found a little less obvious. I certainly wouldn’t have expected the perceived value of ready access to conservative care personnel to be as high as seen in the patient group. Indeed, my surprise echoes that of the participating health care providers who ranked that same indicator low.

Similarly, the patient group prioritized ensuring the care team included certain roles much higher than providers did – noting that they would like it to include a physician, a nurse, and access to home services, when appropriate. This type of information is indispensable to those crafting programs to manage patients choosing to forego dialysis. The entire list of top indicators within each group – as well as how the two groups compared to one another within their top 10 domains – can be seen below:

Comparison of Quality Indicator Priorities Between Patient/Caregiver Nominal Groups and Health Care Professional Delphi Process. Table 4 from Harrison et al, AJKD, © National Kidney Foundation.

This type of work should hold a special place in all of our reading lists. In our zeal to deliver high-quality care in our dialysis units, we have erected safeguards around their care, ensuring ready access to social work, dietary counseling, transportation, etc. We hold regular team meetings where we discuss, in great detail, the many facets of their social situation, their dialysis care, and their general health.

For those patients who elect not to pursue dialysis, most of us don’t have something similar. In these cases, how can they get access to support services? How long would it take them to get a message to me or my nurse? Will I notice as well as my dialysis techs and nurses do if their grooming and self-care is declining? In my practice, I see most of these patients monthly or every other month. During those visits I can screen for symptoms, refer them to our renal dietitian, or connect them with our social worker or case manager. But it isn’t nearly as seamless as it might be for my dialysis patients.

I ask myself a question that doesn’t have a great answer: Are we doing enough for those people who make the rational decision not to pursue dialysis? 

There are pressures that will slow us down as we try to do more. It is worth mentioning that most of the respondents in the provider group surveyed were from places outside the United States. In the US, there is generally lack of payer support for robust conservative kidney management programs. There has been recent published work that has modeled the potential cost-savings of multidisciplinary care teams in advanced CKD, but it has not yet been truly tested in the modern healthcare delivery framework. I think that this barrier is surmountable with time, particularly within systems that could track such initiatives and demonstrate cost-savings.

In this article, many of the respondents were from outside the US, and I applaud that 60% reported that they already had a dedicated conservative kidney management program that was in place at their institutions. As we find ways to build and bolster these programs, this work will further offer potential quality indicators to use as we evaluate ‘best practice’ within the space. In the meantime, I’m grateful for the insights from the authors, and look forward to learning more about making this type of program work for our patients.

– Post prepared by Ed Gould, AJKDBlog Contributor. Follow him @paininthekidney.


To view Harrison et al (subscription required), please visit

Title: Identification and Prioritization of Quality Indicators for Conservative Kidney Management
Authors: T.G. Harrison, H. Tam-Tham, B.R. Hemmelgarn, M.T. James, A. Sinnarajah, and C.M. Thomas
DOI: 10.1053/j.ajkd.2018.08.014





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