Patients with end-stage kidney disease (ESKD) who decide to forego dialysis and opt for ‘conservative management’ spend less time in hospital and some may get better symptom relief, but they do not live as long as those who choose dialysis.
Recently reported new data have added to the body of knowledge on this topic, including a paper from Mark A. Brown, MD, of St. Georges Hospital in Sydney, Australia, and colleagues, and US data on more than 300,000 total patients from the OptumLabs Data Warehouse presented recently as a poster at the National Kidney Foundation Spring Clinical Meetings in Boston. The latter showed that those opting out of dialysis had less than half the hospitalization rate during subsequent months compared with patients who started on dialysis regardless of their age.
In Brown’s study of 510 patients with end-stage kidney disease (ESKD), 280 patients opted for conservative kidney management while the remaining 230 went on dialysis.
The rate of patients having two or more unplanned hospital admissions was 39% among those on conservative kidney management compared with a 66% rate among those on dialysis (P = .001). And 53% of the patients on conservative kidney management had an improvement in total symptom burden after a median of 14 months of follow-up, compared with 38% of the patients who started dialysis during a median of 12 months of follow-up.
But median survival was 14 months in the conservative kidney management patients compared with 53 months for those treated with dialysis.
“Our patients on conservative kidney management were on average 10 years older and twice as likely to have three or more comorbidities than the dialysis cohort, so we anticipated they would have faster demise,” Brown said of the paper, published in Nephrology, Dialysis and Transplantation.
What Prompts the Decision to Choose Not to Have Dialysis?
Brown says patients who opt out of dialysis tend to be elderly or have numerous comorbidities. They are trading, to a point, quality of life for quantity and the decision needs to involve all parties — the patient, the treating physicians, and the family, he stressed.
“Strictly speaking, every patient who is a candidate for dialysis should be given the option of conservative care as this constitutes informed consent, but in practice, we generally follow the guideline of the Renal Physicians Association, which says that it is reasonable to forgo dialysis in people who are at least 75 years old and have comorbidities, poor functional status, frailty, poor nutrition,” or an anticipated remaining lifespan of less than a year, he explained.
Older age “is a flag,” but Brown stressed that “we pay just as much attention to these other factors, regardless of age.”
The role of older age as a trigger for considering conservative kidney management instead of dialysis is especially relevant because increasingly it’s older patients who are developing ESKD, especially in the United States and other industrialized countries.
The chronic kidney management program for patients with end-stage kidney disease in Australia began in 2009 (the first chronic kidney management programs started in the UK a few years earlier). But the US is way behind.
“Patients more than 75 years old form the fastest-growing group. It is striking how many elderly patients we now treat with dialysis,” said Susan P.Y. Wong, MD, a nephrologist with the VA Puget Sound Health Care System and the University of Washington in Seattle, who has studied conservative kidney management use in US practice.
Wong told Medscape Medical News that one of the main reasons the US is struggling on the issue of opting out of dialysis is that “education about conservative kidney management is lagging” in US nephrology training programs. “People struggle with how to deliver conservative kidney management on a widespread basis,” she noted.
A Patient Scenario for Opting Out of Dialysis
Brown offered this scenario of a typical chronic kidney management case that he sees: An 84-year-old man with an estimated glomerular filtration rate (eGFR) of 16 mL/min/1.73m2 and with diabetes and heart failure who, following a shared decision-making process with his clinicians, wife, and daughter, opts for chronic kidney management rather than starting dialysis. To formalize the decision a chart entry for the patient spells out that dialysis is no longer an option.
Brown said the patient “and his family know from the outset that his median survival is about 14 months. We manage him as much as possible with clinic visits and home visits by nurses, and as he reaches his final phase, we either manage him at home with support from our community palliative care team or he goes to a hospice.”
Becoming hospitalized at this point is possible but is less common than eventual death at home or in hospice.
Room for Improvement in the US
Whereas a shared decision determines which patients with ESKD go to dialysis and which to conservative kidney management at Brown’s program in Sydney and in programs elsewhere in Australia, the UK, Europe, and Canada, Wong outlined the current situation in the US.
“I suspect the rate is even lower in other US healthcare systems,” Wong said.
She noted that during her nephrology training about a decade ago, she received no exposure to the topic of conservative kidney management.
Without training, “conversations with patients and their family about goals-of-care and advanced-care planning make providers anxious,” said Wong. “The conversations are charged with a lot of grief.”
Wong also published a study in 2019 that focused on interviews with 21 nephrologists experienced in treating patients with ESKD who decided to not start dialysis. She and her co-authors concluded that “far-reaching changes” in culture, practice, and infrastructure are first needed to support more widespread delivery of conservative nephrology care to US patients with ESKD.
Despite Wong’s interest in this topic, she notes, “we do not have a dedicated conservative kidney management program at the University of Washington. Each nephrologist makes it up as they go,” she explained.
“There is room for improvement at my center, and everywhere else” in US practice.
Her center is now starting a “low eGFR clinic” that will focus on symptom management and a shared-decision approach to starting dialysis.
What Specific Factors Are Hampering US Use of Conservative Care?
One recent commentary authored by nephrology and palliative care staff in the US found a number of factors that are hampering wider US use of conservative kidney management, which they termed “active medical management without dialysis” (AMMWD) for patients with ESKD.
- Lack of provider preparedness to view AMMWD as an acceptable option to offer patients
- Lack of provider skills and confidence in holding goals-of-care conversations that include the option of AMMWD
- Lack of knowledge and comfort in determining and discussing patient prognosis and selection
- Ethical considerations, including the moral distress of the nephrology clinicians when they do not offer kidney replacement therapy
- Institutional barriers, including time constraints for conversations with patients about their goals of care and advanced-care planning, and institutional incentives to maximize the number of patients on dialysis
Brown, the Sydney nephrologist, highlighted the roadblock caused by the “outdated notion that palliative care is only involved during the dying phase.”
“Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians,” the authors write.
“These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care,” they conclude.