Medical management without dialysis offers alternative therapy
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When patients face advanced kidney disease, dialysis and transplantation are usually considered the two likely modality options.
However, nephrologists and other care givers who support conservative management of patients with chronic kidney disease – often called active medical management or medical management without dialysis – said offering this option and collaborating with patients who prefer management of their life with kidney failure without dialysis is taking a patient-centered approach.
“Medical management without dialysis is about quality of life the way the patient defines it, as opposed to prolonged survival with dialysis,” Alvin Moss, MD, professor of medicine in the sections of nephrology and palliative medicine at West Virginia University School of Medicine, told Nephrology News & Issues.
“Many older patients with comorbidities may not live any longer with dialysis than without it. When they hear that, they don’t want the disruption to their life that dialysis entails.”
The number of patients who have chosen medical management without dialysis (MMWD) is difficult to determine. Neither CMS nor the U.S. Renal Data System (USRDS) track patients who decide to bypass renal replacement therapy.
Source: Amar Bansal, MD
“As part of our ESKD treatment history, we only track those patients who discontinue dialysis,” Eric Weinhandl, PhD, an epidemiologist with the Chronic Disease Research Group, said.
Weinhandl and others point to data that look at the survivability of patients in stage 5 CKD during their first year of dialysis.
“The [1]-year survival estimates among incident ESKD patients aged 80 to 84 years and 85 [plus] years were 67% and 60%, respectively,” Weinhandl said, referring to data from the USRDS 2020 Annual Data Report. “With such low survival, and an assuredly substantial impact of dialysis on quality of life, one can readily conclude that conservative care is a perfectly reasonable option.”
Decisions about dialysis
The kidney care community has had several reference tools at their disposal to help determine the utility of dialysis for all patients. In its 1991 report, Kidney Failure and the Federal Government, the Institute of Medicine (IOM) recognized the ESKD population was growing beyond initial projections. There was an “increasing number of patients with limited survival possibilities and relatively poor quality of life” on dialysis, according to the report.
The IOM recommended guidelines be developed for evaluation of patients for whom the burdens of renal replacement therapy may substantially outweigh the benefits and specified that nephrologists should be encouraged to use discretion in the assessment of the individual patient.
Following on the IOM recommendation, the Renal Physicians Association (RPA) and the American Society of Nephrology published in 2000 the clinical practice guideline, “Shared decision-making in the appropriate initiation of and withdrawal from dialysis.”
In the 2010 second edition published by the RPA, the authors noted that since the first edition, a number of studies had reported the poor prognosis of some of the oldest patients with stage 4 and 5 CKD for whom dialysis may not provide a survival advantage compared to active medical management without dialysis.
The Kidney Disease Improving Global Outcomes (KDIGO) International Conference on kidney supportive care made a similar recommendation.
“Comprehensive conservative care should be provided as a viable, quality treatment option for patients who are unlikely to benefit from dialysis,” the organizers wrote.
Jane Schell, MD, FNKF, who helps manage patients who have chosen active medical management of their kidney disease, said the approach can be positive for patients and nephrologists.
“Our field has turned geriatric. Our education, research and our metrics have never changed,” Schell, an associate professor in the section of palliative care and medical ethics in the division of renal-electrolyte at the University of Pittsburgh Medical Center, said. “How we measure ourselves as clinicians is getting people to dialysis or transplant ... We have to change the mental framework about what we and the patient see as important. Dialysis adds time, but what does that time look like?”
Despite available guidelines on supportive care, a small portion of nephrologists offer the option to patients (see Table on page 20 for list of programs in the United States).
Keren Ladin, PhD, MSc, an associate professor in the departments of occupational therapy and community health and director of the Research on Ethics, Aging, and Community Health Lab at Tufts University, interviewed nephrologists about their comfort with offering MMWD. In 35 semi-structured interviews, Ladin and colleagues found 37% described routinely discussing conservative management with their patients.
“Many nephrologists derived confidence from longstanding relationships with patients and perceived treatment selection as their primary role,” the researchers wrote in a 2018 paper published in the American Journal of Kidney Diseases. “Some were dismissive of patient preferences, viewing patients as uninformed about the realities of dialysis therapy or as simply not wanting to try.”
According to the article, one nephrologist told Ladin: “I wouldn’t say that I present [options] neutrally for them to make a decision ... because my own bias is that the [patients] that I’m presenting [dialysis] to are generally the ones that I think it would be beneficial.”
In an interview with Nephrology News & Issues, Ladin said nephrologists may not want to see themselves as withholding care, and often may overestimate the benefit of dialysis.
“I think truly many nephrologists are optimistic and think their patients may fare better than average, and often focus on some uremic symptoms which can be relieved with dialysis as opposed to other quality of life burdens associated with dialysis,” Ladin said. “I believe if the case for supportive care was clearer, the clinical management and reimbursement were better established, and if there was more of a multidisciplinary team supporting patients who opted not to pursue dialysis, nephrologists may be more open to this approach.”
Ladin said the attitude about supporting MMWD has changed little among nephrologists since the 2018 study.
“We are in the last year of a large [randomized controlled trial] RCT to study the comparative effectiveness of a web-based decision-aid (Decision Aid for Renal Therapy (DART) trial) to help older patients and clinicians make treatment decisions,” she told Nephrology News & Issues. “Our qualitative findings show there has been some adoption of conservative management among clinicians and teams that deeply believe in it, but it is difficult to say this is widespread.”
Moss said there may be a perception among nephrologists that depriving a patient of dialysis will lead to an uncomfortable death.
“The data do not show that is the case,” Moss said. “These patients live longer than many people think they might live.”
Famous New York columnist Arthur Buchwald passed away at 81 in 2007 after he had stopped dialysis to treat his kidney failure. But instead of living an expected 2 to 3 weeks in hospice care, he lived 11 months, while he finished writing a book and doctors managed his kidney disease, Moss said.
Part of the dilemma is Medicare patients who forgo treatment for their kidney disease and enter hospice are not covered for palliative dialysis if a nephrologist believes some treatment may fulfil a patient’s wish to live longer to accomplish a life goal. Through a grant from the Palliative Care Research Cooperative, Schell is working with dialysis provider Dialysis Clinic Inc. and hospice provider Family Hospice to learn about perspectives of patients, caregivers and clinicians with the goal to develop a concurrent program that can be generalized and impact policy changes. “The patients are offered up to 10 treatments which are adjusted for goals and symptoms,” Schell said.
Quality of life
Quality of life is a key factor for patients to consider when faced with the need for dialysis, care givers told Nephrology News & Issues, and MMWD should be offered to patients as an alternative.
“Patients are hugely impacted by what they perceive as our explicitly offering them just one choice,” Catalina Sanchez-Hanson, MD, told Nephrology News & Issues. “They appreciate it if we give them options. If we do not, and they do not want dialysis, it takes away their hope. My experience is that such patients live in fear of suffering because they believe they never can stop dialysis.”
Moss, Ladin and others interviewed for this Cover Story said active medical management needs to be taught during medical school.
“Formal education, along with clinical guidance from professional societies and CMS, about clinical models for providing active medical management, including collaboration with palliative care, social work and nutrition, is essential,” Ladin said. “Changing reimbursement models to financially support and incentivize active medical management is also critical.”
Christine Corbett, DNP, APRN, FNP-BC, CNN-NP, FNKF, associate chief nursing officer for Advanced Practice Providers and a nurse practitioner for nephrology and palliative care at Truman Medical Centers, Kansas City, Missouri, told Nephrology News & Issues: “I agree that many nephrologists have difficulty making decisions about referring to conservative care, or withdraw from dialysis, even in critically ill patients. The research supports this view.
“I currently work in a dual nurse practitioner role within nephrology and most recently inpatient palliative care. Through my palliative care experience, I am able to care for them holistically in the outpatient clinic, refer to home palliative care or hospice when indicated for transitional care. During the initial visit, we discuss goals of care, and if the person is willing, an ACP and DPOA are completed. On the inpatient side, I see nephrologists struggle to withdraw dialysis and conservative management in many patients, and from my experience, I see them wanting the patient to have more time to recover or improve and personally see dialysis as a life-saving bridge to that recovery,” Corbett said.
Moss worked with the Coalition for Supportive Care of Kidney Patients and George Washington University School of Nursing to develop the Pathways Project, a tool that outlines steps for nephrologists and care teams to educate patients on kidney supportive care and the medical management without dialysis pathway which provides resources to clinicians who want to develop their own medical management program.
“What we are trying to do is identify ways to implement best practices for supportive care for patients with chronic kidney disease,” Moss said.
Funded by the Gordon and Betty Moore Foundation, the researchers developed 14 evidence-based recommendations designed to bring about improvements in the delivery of supportive care. Important steps include the following:
- assemble an interdisciplinary team with a day-to-day leader and champions;
- assess unmet supportive care needs in the patient population;
- provide education to staff on the principles and practices of primary supportive care, including communication skills;
- implement shared decision-making for current and advance care planning for future care options;
- welcome, support and involve family (defined by patient) in the care process to the extent desired by patient;
- create structures (EMR, registries) to make proxies, advance directives and portable medical orders available and actionable across care settings;
- prioritize seriously ill patients with CKD and ESRD for primary and specialty supportive care interventions;
- provide medical management without dialysis to patients avoiding or delaying dialysis;
- screen and manage pain and symptoms;
- assess psychological and spiritual needs and address needs;
- proactively identify and manage patients at high-risk for frequent hospital readmission;
- coordinate care and care transitions with specialty palliative care and hospice, and
- offer palliative dialysis and systematic dialysis withdrawal process for appropriate patients.
“Few studies have explicitly focused on enrolling patients seriously ill with kidney failure, and monitoring the outcomes that matter to these patients,” Dale Lupu, PhD, of the Center for Aging, Health and Humanties at George Washington University, wrote with colleagues in an article about the Pathways Project. “The Pathways Project is innovative because it will help to fill the knowledge gap of how to improve the qualtiy of supportive care for patients seriously ill with kidney failure.”
Development of a registry
Expanding knowledge of MMWD could also be aided by an ability to track the number of patients nationally who chose the option.
“We need to learn more about how patients and their families feel about a variety of outcomes if they opt for conservative care,” Amar Bansal, MD, a nephrologist in the division of nephrology at the University of Pittsburgh Medical Center, told Nephrology News & Issues. “It would be helpful to describe their symptoms, care delivery system and outcomes so we can get more information on the success of MMWD.
“Having a registry could also help dispel the notion that conservative care means someone will die imminently. This kind of information, especially for patients in the American health care system, would be helpful to describe in our kidney care community,” Bansal said.
Ultimately, patients with advanced kidney disease should be part of the decision-making process when it comes to treatment, including the option of no treatment at all.
“Patients have the right to be informed of their options,” Schell said.
Learning about those choices and offering support to patients for their decisions should begin in medical school, Bansal noted.
“Dialysis is certainly one of these amazing therapies that helps countless people live their lives. Yet, at the medical school level, my hope is more general – that we train physicians to think about all interventions as having benefits that are counterbalanced by intrinsic limitations,” Bansal said. “The emphasis to our students and trainees is frequently on disease processes. Hopefully, we can shift that emphasis more toward helping the patient feel better and more carefully matching our treatments to their preferences.”
- References:
- Davison SN, et al. Kidney Int. 2015;doi:10.1038/ki.2015.110.
- Ladin K, et al. Am J Kid Dis.2018;doi:10.1053/j.ajkd.2017.11.011.
- https://go.gwu.edu/mmwd
- https://nursing.gwu.edu/pathways-project
- Kidney Failure and the Federal Government Institute of Medicine (US) Committee for the Study of the Medicare End-Stage Renal Disease Program. National Academy of Medicine.1991;doi:10.17226/1818.
- Renal Physicians Association. Shared decision-making in the appropriate initiation of and withdrawal from dialysis, 2nd ed. 2010. https://cdn.ymaws.com/www.renalmd.org/resource/resmgr/Store/Shared_Decision_Making_Recom.pdf.
- For more information:
- Amar Bansal, MD, is an associate professor in the section of palliative care and medical ethics in the division of renal-electrolyte at the University of Pittsburgh Medical Center and can be reached at bansalad@upmc.edu.
- Christine Corbett,DNP, APRN, FNP-BC, CNN-NP, FNKF, is an associate chief nursing officer for Advanced Practice Providers and she can be reached at Christine.corbett@tmcmed.org.
- Keren Ladin, PhD, MSc, is an associate professor in the departments of occupational therapy and community health and director of the Research on Ethics, Aging, and Community Health Lab at Tufts University. She can be reached at keren. ladin@tufts.edu.
- Alvin Moss, MD, is professor of medicine in the sections of nephrology and palliative medicine at West Virginia University School of Medicine in Morgantown, West Virginia, and can be reached at amoss@hsc.wvu.edu.
- Catalina Sanchez-Hanson, MD, is a nephrologist with Dallas Nephrology Associates and can be reached at sanchezc@dneph.com.
- Jane Schell, MD, FNKF, is an associate professor in the section of palliative care and medical ethics in the division of renal-electrolyte at the University of Pittsburgh and can be reached at schelljo@upmc.edu.
- Eric Weinhandl, PhD, MS, is an epidemiologist with the Chronic Disease Research Group, based in Minneapolis. He is also a member of the Editorial Advisory Board for Nephrology News & Issues. He can be reached at eweinhandl@cdrg.org.
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