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Patients’ families prefer when dialysis is stopped before death or additional hospice services are provided
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Surveyed family members rated end-of-life care higher when dialysis was discontinued before death or when hospice services were provided along with dialysis treatments, according to a published study.
“Many of the technological advances in medicine during the last half century have profoundly altered the nature of the dying process and the timing of death,” Claire A. Richards, PhD, RN, postdoctoral fellow at Health Services Research & Development, Veterans Affairs Puget Sound Health Care System in Seattle, and colleagues wrote. “In many instances, treatments intended to prolong life have the ‘double effect of prolonging life and prolonging dying.’ The more widespread availability of technologies, such as dialysis, mechanical ventilation, artificial nutrition and other life-sustaining interventions, can delay death but also raise ethically challenging questions about the value of life and whether and when to withhold or stop these treatments.”
Following a study, also led by Richards, that determined families of patients who died with kidney disease preferred comfort-focused end-of-life care, researchers again administered the Bereaved Family Survey to determine the association of stopping dialysis with family perceptions of care-quality and whether this varied based on receipt of hospice services. All respondents were family members of patients who had been treated with maintenance dialysis at Department of Veterans Affairs medical centers (72.2% continued dialysis treatment until death, with those who stopped dialysis more likely to have been receiving hospice services at time of death than those who continued: 58.1% vs. 17.7%). The survey assessed overall quality of care, as well as perceptions on communication, emotional and spiritual support and pain management.
Researchers found families were more likely to rate the overall quality of end-of-life care as excellent if the patient had stopped dialysis than if the patient continued (54.9% vs. 45.9%). In addition, family members of those who discontinued treatment were more likely to report that clinicians always took time to listen; were always kind caring and respectful; always kept the patient and family informed; and always provided support.
Family members of patients who did not stop dialysis but who received hospice services were more likely to rate overall quality of end-of-life care as excellent (60.5% vs. 40%), as well as more likely to report clinicians provided spiritual support (65.5% vs. 47.5%) and that clinicians alerted them to patients’ impending death (85.3% vs. 72.6%), than were family members of those who continued dialysis with no hospice services.
“These findings suggest there is a need for more systematic efforts to prepare patients undergoing dialysis and their families for end-of-life decision-making and to inform them about the option of stopping dialysis if their illness progresses or their goals change,” the researchers concluded. “This might include ongoing efforts to elicit patients’ goals and values as they pertain to dialysis and other life-prolonging treatments, as well as palliative and hospice care services, and to formulate a plan for future care that reflects what is most important to each individual.”
While Channing E. Tate, MPH, and Daniel D. Matlock, MD, MPH, both of the University of Colorado School of Medicine in Aurora, commended the authors for the “highly credible evidence,” they also said to keep in mind the differences between patients in the Veterans Affairs health systems and those receiving Medicare.
“Patients in the VA have the option of pursing treatments, such as chemotherapy and dialysis, while they pursue hospice services,” they wrote. “In contrast, patients in the Medicare fee-for-service system often must forgo expensive, life-prolonging therapies at the time they begin receiving hospice services simply because of the payment model ... [In addition], one should not conclude that stopping dialysis leads to better quality of care. Indeed, the fact that those who continued dialysis but received hospice services had the highest ratings of care at the end of life suggests there is a lack of causal link. An alternative interpretation would be that people who stopped dialysis or received hospice services were very different than the larger group of people who continued dialysis and did not receive hospice services. This article highlights several important questions about death. Death is inevitable, but what is a good death?” – 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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The Richards and colleagues study of family perception of the quality of end-of-life care for veterans with ESRD adds another strong piece of evidence to a growing body of scholarship about how to help ESRD patients and their families achieve a softer landing at the end of life.
The main finding showed a strong association between stopping dialysis before death and family rating of overall excellence of care at the end of life. Families of patients who had stopped dialysis rated the care as excellent 54.9% of the time vs 45.9% for patients who had continued dialysis (risk difference [RD], 9 P = .002).
Even more striking was the 20 percentage-point difference that adding concurrent inpatient hospice services made for the 72.2% of patients who continued dialysis until death. Among patients who continued dialysis, families of those who received hospice services were more likely to rate end-of-life care as excellent compared to those who did not receive hospice (60.5% vs 40%; RD, 20.5% P < .001).
Taken together, these two findings suggest that a key to helping patients find that soft landing is offering a broad array of choices to meet different patient values, goals and preferences.
In an accompanying commentary, Tate and Matlock propose “that all individuals are entitled to define what a good death means to them and possess the information, agency, and opportunity to choose what helps them achieve [it].” We detect that sense of agency in the Richard’s study. Only 18% of patients continuing dialysis until death had hospice services as well, but the families of this minority thought their care had been better. Similarly, family care ratings were higher among the 28% who stopped dialysis before death.
This does not mean that all patients should be steered toward those choices. Rather, it underscores the need for policies and practices that broaden the set of pathways, inform patients about alternate paths and help them choose what suits them best.
It is important to note that the Richards study only covers patients who died in a Veterans Affairs inpatient setting. This makes it difficult to generalize to the broader Medicare population, where the overwhelming majority of hospice care is provided in a home setting (inpatient hospice accounts for only 1.7% of Medicare hospice days provided.1 ) If Tate and Matlock are correct, as we think they are, in suggesting that “agency and opportunity” are essential ingredients to excellent care, then these findings would likely hold up when applied to home hospice, as well.
Unfortunately, the ability to access hospice concurrent with dialysis is tightly constrained for Medicare beneficiaries. Although Medicare regulations clearly allow concurrent dialysis and hospice when the “terminal diagnosis” qualifying the patient for hospice is other than ESRD, this only applies to a minority of ESRD patients.2 Furthermore, anecdotal reports suggest that many hospices are, unfortunately, reluctant to use even this narrow opening. With the exception of those hospices still offering “open access” or experimenting with trials of concurrent hospice and dialysis, it may take considerable effort to negotiate appropriate hospice care for an ESKD patient.
The recently announced American Kidney Health lays out laudable aspirations to provide more patient-centered choices for people who have ESRD3 but the vision for more patient-centered care as realized in the proposed new ETC payment model is still one of constrained choice. It incentivizes better CKD care, transplants and home dialysis, but these are not the choices that ESRD patients need when they reach the last months of life. A broader array of choices, including palliative dialysis, medical management without dialysis, and concurrent hospice and dialysis should be supported through appropriate payment, quality measures, and patient and provider education.
The current clinical default to keep on going and do more is not what every patient wants. It is time to listen to what the family respondents in the Richards study are telling us: The opportunity to choose alternate paths tailored to patient and family needs – such as increasing access to concurrent hospice and dialysis – is better care. Let’s build those pathways so patients have a true choice for their closing chapter.
References:
1. MedPAC (Medicare Payment Advisory Commission). Hospice Services (Chapter 12). Washington, D.C. 2018. www.medpac.gov/docs/default-source/reports/mar18_medpac_ch12_sec.pdf?sfvrsn=0.
2. CMS Medicare Benefit Policy Manual, End Stage Renal Disease 40.B, pg. 37 - Coverage under the Hospice Benefit (Rev. 219, 01-13-16). www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/bp102c11.pdf. Accessed Sept. 6, 2019.
3. Advancing American Kidney Health. HHS, 2019; https://aspe.hhs.gov/system/files/pdf/262046/AdvancingAmericanKidneyHealth.pdf.
-Dale Lupu, MPH, PhD
Associate research professor
Center for Aging, Health and Humanities
School of Nursing
George Washington University
Associate faculty
Bloomberg School of Public Health
Johns Hopkins University
-Daniel Lam, MD
Clinical associate professor of medicine
Division of nephrology
University of Washington
Palliative Care Medical Advisor
Northwest Kidney Centers
Seattle
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