Renaissance needed in conservative management of patients with ESKD

Issue: June 2020

BySusan P. Y. Wong, MD, MS

Not long ago, when dialysis was still a scarce resource, caring for patients through the final stages of their kidney disease without dialysis was a fundamental part of nephrology practice. Through a combination of advancements in dialysis technology and an amendment to the Social Security Act in 1972 entitling patients to receive dialysis paid for by Medicare, dialysis has become ubiquitous.¹ In contrast, conservative management of advanced kidney disease is largely absent from current fellowship training curricula²and clinical practice guidelines.³

Nonetheless, the need for a conservative option as an alternative to dialysis persists and has driven resurgent efforts to develop contemporary models of conservative care.

Conservative management

Conservative management of advanced kidney disease encompasses a holistic and multidisciplinary approach to care that includes interventions to delay progression and minimize complications of kidney disease, active symptom management, advance care planning and psychosocial, caregiver and spiritual support.⁴ The goal of conservative care is not only to live as well as possible without dialysis, but also to help patients cope with the prospect of declining health and death when they reach end-stage kidney disease.

In other developed countries, nephrologists have pioneered dedicated conservative care programs to meet the needs of patients who forgo dialysis. Emerging evidence from these countries suggest that for patients 75 years and older who have significant comorbidity and functional impairment, survival⁵ and quality of life⁶ may be no different between those opting for dialysis vs. conservative care. Patients who opt for conservative care also spend less time in the hospital, are less likely to receive invasive procedures near the end of life,8 are more likely to receive palliative care and hospice, and less often die in the hospital setting.^7,8

Far less is known about conservative care practices in the United States. In the largest study conducted in this area, completed in the national Department of Veterans Affairs health system, it was estimated that one in seven patients who reached an eGFR less than 15 mL/min 1.73m² did not pursue initiation of dialysis.⁹ The decision to forgo dialysis was also more common at older ages and among patients with significant comorbid burden.⁹

Like their international counterparts, patients who did not pursue dialysis received less intensive care near the end of life as compared with those treated with dialysis.¹⁰ However, there were striking gaps in end-of-life care for patients who did not pursue dialysis. For instance, in-hospital death was higher (41.1% vs. 12.4%)^10,11 and hospice enrollment (38.7% vs. 62.3%)^10,12 was lower among cohort members who did not pursue dialysis than for other veterans with terminal cancer.

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A post-hoc qualitative analysis of the medical record of aforementioned cohort members who did not pursue dialysis revealed that it was often incredibly difficult for patients to find support for their decision.¹³ When patients expressed a desire not to undergo dialysis, clinicians tended to repeatedly question patients’ preferences, deliberate about patients’ competency to make this decision, try to convince patients to undergo dialysis or proceed as if patients would change their minds and start dialysis. Rather than find ways to proactively support patients’ wishes, nephrologists commonly signed off from patients’ care when dialysis would not be started. These findings resonate with those of other studies indicating many nephrologists view conservative care as akin to “no care” or “giving up,”¹⁴ and feel on uncertain moral ground when dialysis is not initiated.¹⁵

Conservative approaches in the United States

To offer conservative care as a viable option, some nephrologists in the United States have looked to innovative conservative care programs established in other developed countries. A dedicated conservative care pathway could not only provide customized and comprehensive care but also safeguard a patient’s wishes to forgo dialysis from being undermined or contradicted. While these programs have achieved laudable outcomes, it is unclear whether these programs may be transferable or relevant to the U.S. context. Such programs are ideally suited to patients who have made a proactive and explicit choice not to pursue dialysis, but they may be of limited benefit to those who arrive at a decision about dialysis late in the illness trajectory. In other words, a “pathway” approach (dialysis or conservative care) to care that is predicated on making a decision might not accommodate the many patients who are ambivalent, change their minds or need to become sick to make a decision about dialysis.¹⁶

Alternatively, some U.S. nephrologists have adopted a person-centered approach to caring for patients who forgo dialysis that focuses on the “process” rather than the decision itself to guide care.¹⁷ Under a patient-centered framework, visit-to-visit goals are guided by what matters most to individual patients. Care plans are dynamic and responsive to patients’ changing circumstances and values, including accommodation of ill-defined or vacillating preferences toward dialysis. On the one hand, this approach to care is less prescriptive and predictable in terms of how care might unfold, requiring greater effort and creativity on the part of nephrologists to improvise a care structure for patients. On the other hand, a patient-centered approach to care might better serve a broader group of patients who are at different points in their decision-making about their advanced kidney disease.

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History has seen the role of conservative care change from having once been the default to now an option met with great reluctance by many nephrologists in this country. Concerted efforts are needed to not only restore conservative care within the standard repertoire of nephrology care, but also further update models of conservative care to meet the diverse needs of patients with advanced kidney disease.

References:
1. Butler CR, et al. Clin J Am Soc Nephrol. 2016;doi:10.2215/CJN.04780515.
2. Combs SA, et al. Am J Kidney Dis. 2015;doi:10.1053/j.ajkd.2014.07.018.
3. National Kidney Foundation. KDOQI Clinical Practice Guideline for Hemodialysis Adequacy: 2015 update. Am J Kidney Dis. 2015;doi:10.1053/j.ajkd.2015.07.015.
4. Davison SN, et al. Kidney Int. 2015;doi:10.1038/ki.2015.110.
5. O’Connor NR, et al. J Palliat Med. 2012;doi:10.1089/jpm.2011.0207.
6. Tsai HB, et al. Clin Invest Med. 2017;doi:10.25011/cim.v40i3.28392.
7. Shum CK, et al. J Gerontol A Biol Sci Med Sci. 2014;doi:10.1093/gerona/glt098.
8. Carson RC, et al. Clin J Am Soc Nephrol. 2009;doi:10.2215/CJN.00510109.
9. Wong SP, et al. Clin J Am Soc Nephrol. 2016;doi:10.2215/CJN.03760416.
10. Wong SP, et al. Am J Kid Dis. 2018;doi:10.1053/j.ajkd.2017.11.007.
11. Gidwani-Marszowski R, et al. Health Aff (Millwood). 2018;doi:10.1377/hlthaff.2017.0883.
12. Mor V, et al. Cancer. 2016;doi:10.1002/cncr.29827.
13. Wong SP, et al. JAMA Intern Med. 2019;doi:10.1001/jamainternmed. 2018.6197.
14. Ladin K, et al. Am J Kidney Dis. 2018;doi:10.1053/j.ajkd.2017.11.011.
15. Butler CR, et al. J Gen Intern Med. 2019;doi:10.1007/s11606-019-05466-w.
16. Wong SP, et al. JAMA Intern Med. 2016;doi:10.1001/jamainternmed. 2015.7412.
17. Wong SP, et al. Am J Kidney Dis. 2019;doi:10.1053/j.ajkd.2019.07.006

For more information:
Susan P. Y. Wong, MD, MS, is an assistant professor in the division of nephrology at the University of Washington. She can be reached at spywong@uw.edu.

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Sources/Disclosures

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Disclosures: Wong reports funding from the NIH, National Palliative Care Research Center and the VA National Center for Ethics in Health Care.

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