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Survey: Families of patients who died with kidney disease preferred comfort-focused end-of-life care
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Families of patients who died with advanced chronic kidney disease viewed “aggressive” end-of-life care that focused on life extension less favorably than receipt of palliative care and hospice services, according to a recently published study.
“Despite having a high symptom burden and limited life expectancy, patients with advanced CKD spend more time in the hospital and intensive care unit during the final months of life and are more likely to receive high-intensity interventions intended to prolong life than patients with some other serious illnesses,” Claire A. Richards, PhD, RN, postdoctoral fellow at Health Services Research & Development, Veterans Affairs Puget Sound Health Care System, in Seattle, and colleagues wrote. “Studies in more broadly defined populations have demonstrated that more intensive patterns of end-of-life care focused primarily on life extension rather than comfort are associated with lower quality end-of-life care. However, most prior studies of end-of-life care among patients with advanced CKD have focused on symptom burden rather than on patients’ and/or family members’ satisfaction or experiences with end-of-life care.”
Researchers conducted a retrospective observational study of 9,993 veterans with advanced CKD who died between 2009 and 2015 (mean age at time of death, 76 years), seeking to describe the relationship between patterns of end-of-life care and exposure to dialysis treatment with family-reported quality of end-of-life care.
End-of-life treatment patterns were categorized as either high-intensity treatment directed at life extension or palliative care. High-intensity treatment consisted of 2 or more weeks spent in an acute hospital within 90 days of death (54% of cohort), ICU admission within 30 days (47%), receipt of at least one intensive procedure within 30 days (eg, mechanical ventilation, cardiopulmonary resuscitation or feeding tube placement [34%]) and death in the ICU (31%). Palliative care consisted of palliative care consultation within 90 days of death and receipt of hospice services at the time of death (26% died in an inpatient hospice or palliative care unit).
Patients were also grouped based on exposure to dialysis: maintenance (34%), acute (at least one diagnostic or procedure code for dialysis in the year before death [12%]) or none (55%). The Bereaved Family Survey was administered to family members (40% spouse/partner; 35% child), who rated the overall quality of end-of-life care as “excellent,” “very good,” “good,” “fair” or “poor.” Individual items related to communication, support and pain management were also considered.
After adjusting for patient and facility characteristics, researchers found family members of patients who spent 2 or more weeks in the hospital, received an intensive procedure in the last 30 days or who died in the ICU rated the overall quality of end-of-life care lower than family members of those who did not.
On the other hand, family members of patients who received a palliative care consult within the last 90 days of life or who were receiving hospice services at the time of death rated the overall quality of care higher than family members of those who did not. Researchers also found patients who were treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis and that family-rated overall quality of care for patients who received maintenance dialysis was lower than for patients not treated with dialysis.
Richards told Healio/Nephrology that she was surprised to find that, while patients who received acute dialysis had the most intensive patterns of care, their family ratings of end-of-life care were no different from those who were not treated with dialysis (and had less intensive patterns of care).
“This argues against relying on end-of-life treatment patterns ascertained from administrative data alone as a proxy for quality of end-of-life care,” she said.
“This study highlights concerns about the intensive patterns of end-of-life care among patients with advanced kidney disease, especially since patients with advanced kidney disease often report that they would prefer to focus on comfort and relief of suffering rather than life prolongation. More research is needed about what drives both patterns and quality of end-of-life care among patients with advanced CKD and to identify opportunities to improve care for members of this population.”– by Melissa J. Webb
Disclosures: Richards reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures.
Perspective
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Alvin H. Moss, MD
There is accumulating evidence that most patients with advanced chronic kidney disease — similar to those with cancer and other chronic medical conditions — do not want high-intensity treatment at the end of life. Specifically, most patients want to die outside the hospital — usually in their own home — and with better pain and symptom management which most often is provided by hospice.
However, in comparison to patients with cancer, heart failure and other conditions, dialysis patients more often die in the hospital and without hospice. In this regard, the study by Richards and colleagues is particularly telling. The quality of end-of-life care of dialysis patients who received high-intensity care (CPR, mechanical ventilation, feeding tube insertion and/or ICU admission) in the 90 days before death was rated lower by their families. In contrast, the quality of care for dialysis patients who received a palliative care consultation and/or hospice services within 90 days of death was rated the highest. These findings are consistent with other studies that show that if dialysis patients were seriously ill, they would choose care focused on relieving pain and discomfort, even if it meant not living as long.
Why are dialysis patients not receiving the end-of-life care they want? The families in the Richards and colleagues study provide us with the answer. Their most favorable response with regard to their loved one’s care was when they were alerted that their loved one was about to die.
Patients and families want to be informed of prognosis so that they can be prepared and make decisions according to their values and preferences. Nephrologists have been reluctant to discuss prognosis with their dialysis patients but knowing that it is important to patients and families may persuade them to do so. There are validated prognostic models they can use to assist them and recommended ways to conduct such discussions.
References:
Cohen L, et al. Clin J Am Soc Nephrol. 2010;doi:10.2215/CJN.03860609.
Couchoud C, et al. Nephrol Dial Transplant. 2018;doi:10.1093/ndt/gfn698.
Mandel E, et al. Clin J Am Soc Nephrol. 2017;doi: 10.2215/CJN.05760516.
Sections of nephrology and palliative medicine
West Virginia University School of Medicine
Morgantown, West Virginia
Chair, Coalition for Supportive Care of Kidney Patients
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