Public Release: 

Study examines end-of-life care for people with kidney failure who undergo amputation

Study identifies high levels of health care intensity in this group of seriously ill patients

American Society of Nephrology

Washington, DC (February 19, 2019) -- Nearly one in ten patients with kidney failure will undergo toe, foot, or leg amputation in their last year of life and during this time, these patients have prolonged stays in health care settings and limited access to hospice services. The findings, which appear in an upcoming issue of the Journal of the American Society of Nephrology (JASN), indicate that efforts are needed to address the palliative care needs of seriously ill patients with kidney failure who undergo amputation. 

Lower extremity amputation portends such a poor prognosis for patients with kidney failure, or end-stage renal disease (ESRD), that experts say that it should prompt clinicians to consider talking with their patients about their wishes for care at the end of life; however, few studies have sought to describe how commonly patients with ESRD undergo amputation during the final months of life or the kind of care they receive.

To investigate, Catherine Butler, MD (University of Washington School of Medicine, in Seattle) and her colleagues studied a group of Medicare beneficiaries who died in 2002-2014. The analysis included 62,075 beneficiaries with ESRD who did and 692,702 who did not undergo lower extremity amputation in their last year of life, as well as 8,937 beneficiaries without ESRD who did and 949,475 who did not undergo lower extremity amputation.

Overall, 8% of 759,777 beneficiaries with ESRD underwent at least one lower extremity amputation in the last year of life compared with 1% of 958,412 beneficiaries without ESRD. Among patients with ESRD, those who had undergone lower extremity amputation were substantially more likely than those who had not to have been admitted to acute and subacute settings in their last year of life, and to have spent prolonged periods of time in these settings. They were also more likely to have died in the hospital and to have discontinued dialysis treatments before death, yet they spent less time in hospice than other patients with ESRD.

"These findings are concerning because despite wide-spread recognition that lower extremity amputation often means a poor prognosis for patients with ESRD, and that the event should prompt discussion about end-of-life preferences, this study suggests that end-of-life care for these seriously ill patients may not align with the kind of care that many seriously ill patients say they prefer--that is, to die at home and focus on comfort rather than life prolongation," said Dr. Butler. "More work is needed to learn about the experiences of these seriously ill patients with ESRD who undergo amputation and to identify opportunities to improve their care."

In an accompanying Perspective article, Erica Perry, MSW (University of Michigan) and her colleagues noted that not all nephrologists feel comfortable discussing end-of-life options with ESRD patients. "By not openly discussing prognosis when complications mount and quality of life declines, we consign patients to more time in the emergency room, hospital, and ICU. Too often, the result is unnecessary pain and suffering, with death in the hospital rather than a place of the patient's choosing," they wrote. "Our own experience as a renal team suggests that discussing goals and prognosis early in the course of illness fosters ongoing relationships and trust, empowers more informed decisions, and promotes closure at the end of life for patients, families and their renal team as well."

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Study co-authors include Margaret L. Schwarze, MD, MPP, Ronit Katz, DPhil, Susan M. Hailpern, DrPH, MS, William Kreuter, Yoshio N. Hall MD, MS, Maria E. Montez Rath PhD, and Ann M. O'Hare MD, MA.

Disclosures: Dr. O'Hare receives grant support from CDC, NIH and VA HSR&D. In the last 3 years she has received honoraria and/or travel support from the following sources: UpToDate, Health and Aging Policy Fellows Program, University of Pennsylvania, Hammersmith Hospital, University of Alabama at Birmingham, DCI and Fresenius Medical Care. She also serves on the Medical Advisory Board for the Northwest Renal Network.

The article, entitled "Lower Extremity Amputation and Health Care Utilization in the Last Year of Life Among Medicare Beneficiaries with End- Stage Renal Disease," will appear online at http://jasn.asnjournals.org/ on February 19, 2019, doi: 10.1681/ASN.2018101002.

The perspective, entitled "Staying the Course: End of Life Care for the Dialysis Patient," will appear online at http://jasn.asnjournals.org/ on February 19, 2019.

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Since 1966, ASN has been leading the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients. ASN has more than 20,000 members representing 131 countries. For more information, please visit http://www.asn-online.org or contact the society at 202-640-4660.

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