Wong SPY, et al. JAMA. 2022;doi:10.1001/jamanetworkopen.2022.2255.

Wong SPY, et al. JAMA. 2022;doi:10.1001/jamanetworkopen.2022.2255.

Patients with advanced chronic kidney disease who choose not to use dialysis can survive many years with improvements to their mental health, in addition to stable physical health and quality of life until late into the illness, data show.

However, researchers found several patients used acute care services and there were significant disparities in access to end-of-life care. Researchers noted more research is needed to optimize outcomes among patients who are not treated with dialysis.

“Prior systematic reviews and meta-analyses reflect only a small fraction of the patients who forgo dialysis described in the literature and provide only a limited view of the clinical course of patients to guide ongoing management and anticipatory guidance to patients who have already decided that they will not pursue dialysis,” Susan P. Y. Wong, MD, MS, from the division of nephrology at the University of Washington in Seattle, and colleagues wrote. “To support a deeper understanding of the long-term outcomes of patients with advanced CKD who do not pursue dialysis, we performed a systematic review of longitudinal studies reporting survival, use of health care resources, quality of life and end-of-life care of patients with advanced CKD who did not pursue dialysis.”

The systematic review comprised of 41 cohort studies and 5,102 adults with advanced kidney disease who did not utilize dialysis. Researchers collected baseline data in addition to patterns of end-of-life care for patients who died during follow-up using a standardized data extraction form. Rather than meta-analyze data, researchers opted to synthesis the reported outcomes.

Among the 34 studies that provided information on survival, researchers found the range of medial survival was 1 to 41 months based on the baseline mean eGFR range of 7 mL/min/1.73 m² to 18 mL/min/1.73 m². Analyses revealed patients underwent approximately one to two hospital admissions, six to 16 in-hospital days, seven to eight clinical visits and two ED visits per year.

During a period of 8 to 24 months, researchers recorded improved mental well-being, and stable physical well-being and overall quality of life until late into patients’ illness.

Among patients who died before follow-ups, researchers observed that 20% to 76% enrolled in hospice, 27% to 68% died in a hospital and 12% to 71% died at home. Similarly, 57% to 76% of patients were hospitalized, and 4% to 47% underwent an invasive procedure during their final month of life.

Researchers noted more studies are needed to optimize the outcomes among patients who choose not to use dialysis.

“Our findings challenge the common misconception that the only alternative to dialysis for many patients with advanced CKD is no care or death. Despite the advanced ages and significant comorbid burden of cohorts in this study, most patients survived several years after the decision to forgo dialysis was made. We also found that mental well-being improved over time and that physical well-being and overall quality of life were largely stable until late in the illness course,” Wong and colleagues wrote. “These findings not only suggest that conservative kidney management may be a viable and positive therapeutic alternative to dialysis, but they also highlight the strengths of its multidisciplinary approach to care and aggressive symptom management.”

Patients with advanced CKD who are deciding whether to start dialysis or pursue a treatment approach called active medical management without dialysis (AMMWD), also known as conservative kidney management, generally want to know, “How long will I live with each treatment approach? What will my quality of life be like? What will my end-of-life experience be?” The JAMA Network Open article “Long-term Outcomes Among Patients with Advanced Kidney Disease Who Forgo Maintenance Dialysis,” by Wong and co-authors providers a distillation of current evidence helpful for advising patients on these questions. They conducted a systematic review of 41 longitudinal cohort studies of adult patients with advanced CKD who chose not to pursue maintenance dialysis, a treatment course they term conservative care. It is telling that their search strategy included more than 20 different terms to describe what they call conservative care. AMMWD is the term recommended in the clinical practice guideline Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis and preferred by patient advisors to the Coalition for Supportive Care of Kidney Patients. One wonders if, in addition to the other recommendations the authors make, the field would advance faster if this patient-preferred terminology was used consistently.

Prior systematic reviews and meta-analysis have included only studies that directly compare patients on dialysis to patients treated without dialysis, but this misses other evidence in the literature about the outcomes for patients choosing AMMWD. This review helps paint a more complete picture of the natural history of patients choosing AMMWD, thus helping clinicians provide information patients want as they consider their treatment options. There were no studies from North America, highlighting how underdeveloped both the practice and the science is for this treatment option in the United States. 

In terms of prognosis, the wide variability in survival across study cohorts stood out. Median survival in each cohort ranged from 1 to 41 months as measured from a baseline mean estimated GFR ranging from 7 mL/min/1.73 m2 to 19 mL/min/1.73 m2. Although the range was large, it is worth noting that most studies reported median survival of at least a year. Of the 34 studies reporting survival, 15 reported median survival of 12 to 23 months; 10 studies reported median survival of 24 months or more. While predicting prognosis for any single patient is always difficult (whether the patient chooses dialysis or AMMWD), this information reinforces that, as a population, it is reasonable to expect patients choosing AMMWD to have a good chance of living a year or more.

In terms of the quality of the time lived with kidney failure while receiving AMMWD, this study reinforces that quality of life typically remains stable. Of special interest, mental well-being improved in the four studies that used either the SF-36 or the kidney disease-related quality of life -short form to measure it. Physical symptoms tended to worsen late in the disease course, consistent with other studies which have described a “symptom cliff” in the last 2 to 3months of life with kidney failure. 

I heartily concur with the authors’ conclusion that their findings (my emphasis added) “underscore the need to develop models of care that optimize outcomes for members of this population who have the potential to live well and for quite some time without dialysis.” Two resources for clinicians and health systems wishing to implement systematic delivery of non-dialytic medical management are the conservative kidney management pathway website developed by the University of Alberta ( https://www.ckmcare.com/ ) 1 and the AMMWD toolkit developed by the Coalition for Supportive Care of Kidney Patients ( https://go.gwu.edu/ammwd ). 2

1. Davison SN, et al. Clin J Am Soc Nephrol. 2019;doi:10.2215/CJN.10510917.

2. Lupu D, Moss AH. Semin Nephrol. 2021;doi:10.1016/j.semnephrol.2021.10.010.

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