Shared decision-making between nephrologists, patients key to conservative kidney management
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Bhavika Gandhi, MD, understands the difficulty patients with advanced chronic kidney disease may face when it is time to make a decision about going on dialysis.
“If patients are at the point where they have made up their mind about not starting dialysis, I make it clear that this is an option; ‘You can decide not to do anything,’” Gandhi, a nephrologist at Southwest Kidney Institute in Phoenix, told Healio | Nephrology News & Issues. “I see more of these patients in the inpatient setting. It is a very emotional topic.”
Gandhi is managing the care of a patient with stage 3a CKD who has initially elected active medical management without dialysis. With little previous care from a nephrologist and an eGFR between 30 mL/min/1.73 m2 to 33 mL/min/1.73 m2, Gandhi told the patient and her family it was time to think about options to ensure the time the patient had left is the best it can be.
Source: Mark E. Neumann, Healio | Nephrology News & Issues
Patients and their families have much to think about when it comes to making a decision about forgoing or withdrawing from treatment, Dale Lupu, MPH, PhD, a research professor at the George Washington University School of Nursing, told Healio | Nephrology News & Issues.
“For some patients, the burden of dialysis — the dialysis access surgery, access-related infections, added hospitalizations, impediments to travel, time at dialysis and dialysis-related symptoms — is cumulative. Its wearying effect on the patient is not appreciated by the clinician,” Lupu said.
“Active medical care, and I emphasize the ‘active,’ is more than simply not doing dialysis. It is preserving kidney function, meticulous symptom assessment and management, and goals of care conversations so that the patient’s wishes for present and future treatment are known and respected,” Lupu said. “Active medical care without dialysis is beneficial for informed patients who choose it because it enables them to use their time and energy on activities they value most.”
Decline, withdrawal from dialysis
It remains unclear how many patients with advanced CKD or end-stage kidney disease die each year after choosing to not start or withdraw from treatment. In the latest annual data report from the U.S. Renal Data System (USRDS), 16.1% of deaths among patients with ESKD in 2021 were attributed to withdrawal from dialysis.
While choosing conservative care or withdrawal from dialysis can occur among multiple age groups with advanced CKD or ESKD, Medicare Fee-for-Service beneficiaries aged 66 to 74 years who were receiving dialysis had more than a fourfold higher adjusted mortality rate than beneficiaries with cancer and a roughly threefold higher mortality than beneficiaries with heart failure or history of an acute myocardial infarction, according to data from the USRDS.
The incident rate, or new starts on dialysis, among patients aged 75 years and older in 2021 was almost triple that for the number of patients aged 45 to 64 years at 1,581 per million population.
Gandhi, who said many of her patients are older than 65 years, said the continued increase in older patients facing a decision about starting dialysis or withdrawing from treatment means that nephrologists need to feel comfortable with offering conservative kidney management as an option – and the management of the patient through end-of-life care that follows.
“When I present the option of home dialysis, patients see that as an opportunity to be at home with family,” Gandhi said. “But they will need a partner. If they decide no dialysis is their choice, then I can help them prepare for that. We tell them that our staff will make sure they are comfortable. We can prescribe them some diuretics, for example, to help relieve the pressure from the fluid overload.”
Conservative kidney management
Patients who decline dialysis treatment do so for many reasons, Fahad Saeed, MB, BS, and colleagues wrote in a paper published in the American Journal of Nephrology. Patients told researchers that quality of life; fewer symptoms caused by dialysis; more personal time; avoiding the burden of dialysis, including for family and friends; witnessing a family member or friend on dialysis and wanting to have a peaceful death were reasons to select conservative kidney management.
“Patients’ decisions to choose conservative management were influenced by their values and previous experience with dialysis, in addition to comorbidities and limited prognoses,” the authors wrote.
In an interview with Healio | Nephrology News & Issues, Saeed said a trial on dialysis can be an option for patients who are not sure about starting dialysis.
“I reserve a time-limited trial if there is a significant decisional conflict,” Saeed said. “Most people, if educated and counseled appropriately, are able to make goal concordant choices.”
Adequate counseling is part of shared decision-making, Saeed said, and gives patients time to ask questions about starting or withdrawing from dialysis: “How long will I live without dialysis? Will it be painful? Can I change my mind later? These are all common questions by patients and families,” Saeed said. “I use a decision aid that we developed to educate patients and families and promote asking these questions. Conversations vary from patient to patient, but identifying what matters the most to them is the key.”
Nephrologists’ role
A research study called Expanding Alternative Care and Knowledge in Decision Making, will examine how nephrologists can be more proactive in helping patients who choose conservative kidney management. Supported by a $11 million grant from Patient-Centered Outcomes Research Institute (PCORI), the goal of the George Washington University-directed study will be to work with 25 nephrology practices across the U.S. to teach clinicians how to improve their shared decision-making efforts about kidney failure treatment options, including the option of active medical care without dialysis.
“United States health care policy has created a powerful ‘dialysis default,’ where virtually all patients with kidney failure who do not receive a transplant are treated with a standard dialysis regimen in a dialysis center regardless of whether it will help them live any longer or better,” Lupu, the principal investigator on the study, wrote on the PCORI project website. “About 20[%] of patients regret the decision to start dialysis, yet non-dialysis alternatives are rarely offered to them. Most report they were unaware they had a choice about kidney failure treatment.”
In an interview with Healio | Nephrology News & Issues, Lupu said the study will compare two interventions. “The first is education and skill-building for nephrology clinicians on communication skills, robust shared-decision making and improved kidney disease education for patients that informs them of all their options, including [alternative treatment plans] ATPs. The second intervention adds a structured kidney supportive care program to support patients who choose an ATP,” she said.
The nephrology practice sites will be trained in both approaches during a 3-year study period; about 2,800 patients will be eligible for the study, Lupu wrote.
Alexander Liang, MD, CEO of Dallas Nephrology Associates and a participant in the study, told Healio | Nephrology News & Issues: “A number of studies show that renal replacement therapy in the [CKD/ESRD] population is exponentially less helpful from both a quantity of life as well as a quality of life aspect among older patients, and that looking at palliative care and support services to assist patients in navigating end-of-life options will become even more important. Furthermore, many nephrologists remain uncomfortable with the concept of active management of patients without dialysis. I believe that this study will show that with the proper infrastructure in place to support practices as well as providers, their patients can choose supportive care without dialysis and receive the help they need to continue progress to the end of their lives in a peaceful and comfortable manner.”
Dialysis, end-of-life care
For patients who have decided to withdraw from dialysis therapy, hospice may be part of the end-of-life care plan. But debate among Medicare regulators and the kidney community has ensued regarding whether dialysis treatment should continue during the time a patient is in hospice.
In a study published in JAMA Internal Medicine, researchers found that nationally, 20% of Medicare patients with ESKD had used hospice prior to death, and those who had were almost twice as likely to have short hospice stays (no more than 3 days), compared with patients with other advanced chronic illnesses.
“These findings argue for greater flexibility in hospice-entry criteria for this population,” Ann O’Hare, MD, a professor of medicine at the University of Washington School of Medicine and a physician-scientist at the Kidney Research Institute, said in a press release about the study.
According to the study, 50% of Medicare beneficiaries who died received hospice care, with a median length of stay of 23 days and an average of 70 days. By contrast, about 42% of patients on dialysis who used hospice were enrolled for no more than 3 days, researchers found.
“These short stays make it difficult for patients dying of kidney disease and their families to fully benefit from the expertise in pain and symptom management that hospice can offer and the emotional support that hospice can provide,” Melissa Wachterman, MD, a physician at Brigham and Women’s Hospital in Boston and lead author on the study, said in the release.
That low usage of hospice services among patients with ESKD may be because Medicare does not cover dialysis treatments while a patient is in hospice. Another study authored by Wachterman in JAMA Health Forum showed that veterans with ESKD receiving hospice financed by the Veterans Health Administration (VA) were more likely to receive concurrent dialysis treatments than those receiving Medicare-financed hospice. Regardless of hospice payer, 87% of all treatments after hospice initiation were financed by the VA, according to the study.
Jane O. Schell, MD, FNKF, an associate professor of medicine and section chief of palliative care and medical ethics at the University of Pittsburgh, said Medicare coverage of concurrent dialysis care while a patient is in hospice has been confusing for dialysis providers, hospice organizations and patients.
“The Medicare hospice benefit currently does not cover dialysis care if ESKD is related to the hospice diagnosis,” Schell told attendees at the American Academy of Hospice and Palliative Medicine conference in March. “Hospices are unable to afford coverage of dialysis treatments so often require discontinuation before enrolling. Patients are forced to choose a path that likely will shorten survival to access hospice treatments,” Schell said. “Thus, fewer patients choose the hospice benefit. Those who choose the hospice benefit often access these services at the end of life with less opportunity to receive its intended benefits.”
A recent study performed by Dialysis Clinic Inc. showed that patients who entered hospice but were able to continue with dialysis had a better end-of-life experience, Schell, an associate editor for Healio | Nephrology News & Issues, said. “Patients on dialysis experience an intensive end of life with limited access to hospice services,” Schell told attendees. “Concurrent care with palliative dialysis is a feasible, patient- and family-centered option to promote timely quality care at end of life.”
Improving access to palliative care and education for specialists on shared decision-making will help patients set their own goals in managing their chronic illness, Lupu said, not only in nephrology but in other specialties.
“It is understandable for all specialties to feel that their interventions have value – and they do. The key is that different patients weigh the balance of burden and benefit differently depending on their own goals and values,” Lupu said. “For interventions that come with significant burdens, as does dialysis, the helpful role of the specialist is to assist the patient to understand how those burdens and benefits may facilitate or impede their individual goals.”
- References:
- Improving shared decision making and access to non-dialytic treatment for people with kidney disease. https://www.pcori.org/research-results/2023/improving-shared-decision-making-and-access-non-dialytic-treatment-people-kidney-disease. Accessed March 22, 2024.
- Many kidney-failure patients must halt dialysis to receive hospice care. https://newsroom.uw.edu/news-releases/many-kidney-failure-patients-must-halt-dialysis-receive-hospice care#:~:text=Patients%20who%20want%20hospice%20care,treatments%20that%20keep%20them%20alive. Published April 30, 2018. Accessed March 22, 2024.
- Saeed F, et al. Am J Nephrol. 2020;doi.1159/000504692.
- United States Renal Data System. 2023 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. NIH, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2023. https://usrds-adr.niddk.nih.gov/2023/end-stage-renal-disease/6-mortality. Accessed March 22, 2024.
- Wong S PY, et al. Am J Kidney Dis 2020;doi:10.1053/j.ajkd.2019.07.006.
- For more information:
- Bhavika Gandhi, MD, can be reached at bgandhi@swkidney.com.
- Dale Lupu, MPH, PhD, can be reached at dlupu@email.gwu.edu.
- Fahad Saeed, MD, can be reached at fahadsaeed20@gmail.com.
- Jane O. Schell, MD, can be reached at schelljo@upmc.edu.
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