- end-stage kidney disease
- chronic kidney disease
- patient activation
- spiritual needs
- spiritual pain
- chaplaincy
- racial and ethnic disparities
“I have better communication with God since I have been on dialysis, and I do communicate with Him more often than I did before I was on dialysis, but I always had been a spiritual person. That gives me strength and courage to continue.”1
Religion and spirituality (R/S) are among the most powerful, yet overlooked, aspects of coping with serious illness. In patients with kidney failure on dialysis, metabolic disarray in the physical body leads to a preponderance of focus there, with markedly less attention paid to psychologic and spiritual realms. In the United States, we know that kidney failure disproportionately affects Black Americans, many of whom have articulated the importance of R/S in their lives.1⇓–3 The woman quoted above beautifully described her interactive and fortifying relationship with God during a survey of primarily Black women on dialysis.
We believe incorporating R/S considerations into routine dialysis care will promote spiritual wellbeing for our patients. We have each been moved by the power and centrality of R/S in some of our patients’ lives, and we believe they provide a means for communication and connection that is currently underexplored. And, although the R/S of Black Americans is far from monolithic, we also wonder if attending to R/S may aid in addressing the large racial and ethnic disparities in kidney disease prevalence, care practices, and outcomes.
In this Perspective, we briefly summarize the existing data on R/S in patients with advanced kidney disease and highlight their reported importance for many Black Americans. We recommend that R/S screening be incorporated as a standard aspect of person-centered kidney care and nudge policy makers to consider system-level changes so that attention to patients’ R/S needs becomes part of a comprehensive approach to quality patient care.
“When I first started dialysis, I was very angry (…) I don’t know, it seems like when I got to a point where I was not coming back to dialysis—that’s when I had to sit down and talk to God and figure out what was going to happen. A lot of that bitterness kind of left just because, you know, for all I know, it could be time for something great (…) and maybe this is just something that you have to do.”1
The term “spirituality” describes the dynamic and personal beliefs and practices involving meaningful and integrated connectedness with oneself, others, nature, and the transcendent. It may or may not include a specific religious affiliation. R/S positively impact the adjustment of many patients to illness (as in the quotes above) and are associated with enhanced quality of life, coping, resilience, mental health, and, among patients on dialysis, adherence to medical recommendations.1,3⇓–5
Patients who identify as Black Americans are more likely than White Americans to report high spirituality, a high degree of comfort from religion, and a greater frequency of religious service attendance.2 Additionally, among women on dialysis, those who identified as Black women reported R/S strengths including perceptions of God’s concern for them, God’s help with loneliness, and a sense of life’s purpose.1 In several studies, Black American patients wished to discuss their R/S with their medical care team.4,6,7
In patients receiving dialysis, R/S may inform end-of-life care preferences including “code status” and dialysis discontinuation.6,7 A misunderstanding of the role of R/S for many Black Americans has resulted in racial stereotypes and inequitable treatment.8
Assumptions about care preferences should not be made based on race or religion, and seeking to understand each patient’s life experiences and values and how they influence one’s decisions is a way to be culturally humble and antiracist.9
Recommendations for Increasing R/S Support in Kidney Care
Studies and interventions must be clinically feasible and flexible enough to cater to diverse R/S needs.
Clinical Care
Individualized, respectful communication that inquiries about the potential importance of faith can help to overcome the failure of clinicians in the past to engage Black Americans in discussions of their values and preferences, and to ensure they receive care that aligns with their goals.9
A first step toward integrative care is R/S screening for all patients. Like blood pressure and potassium, R/S distress and wellbeing can be measured.10 (Box 1) Non-chaplain healthcare professionals can screen for R/S needs in comprehensive care visits at dialysis units as well as in CKD clinics. Many clinicians may prefer to enlist the help of the patient’s preferred R/S advisor if the screening indicates a spiritual need.
Box 1. Approach to Spiritual Screening and Inquiry10
In addition to R/S screening, we believe strong consideration should be given to making it a Centers for Medicare and Medicaid Services (CMS) requirement as part of interdisciplinary care in dialysis units for chaplains to make monthly dialysis rounds, similar to social workers and nutritionists. Among other services, chaplains could provide support for patients experiencing high R/S distress due to their declining health or grief after the death of a fellow patient.
Research
The United States Renal Data System should collect data on self-reported R/S of patients with CKD and ESKD. Additionally, we must request funding for more studies regarding the role of R/S in seeking treatment, adherence to treatment, treatment decision-making, and possible racial/ethnic differences in those decisions.
Studies are needed to examine the comparative effectiveness of different models for R/S screening, assessment, and clinical interventions, and to determine what chaplaincy interventions are most effective and welcome, including one-on-one meetings, communal memorial services, group prayer, or others. Which ones result in an increase in patients’ reported quality of life, ability to cope, and feeling of being heard and understood? Again, this research needs to include attention to racial/ethnic differences.
There is much work to be done to address the racial inequities in care for patients with advanced CKD. Routinely inquiring about the importance of patients’ R/S will improve high-quality communication and holds promise for reduced inequalities in care and stronger clinician–patient relationships.
Disclosures
A. Moss has received honoraria from University of Texas Southwestern and is a scientific advisor or member of the National POLST Plenary Assembly and the Coalition for Supportive Care of Kidney Patients. All remaining authors have nothing to disclose.
Funding
None.
Author Contributions
S. Gelfand, G. Fitchett, and A. Moss conceptualized the study, and reviewed and edited the manuscript; S. Gelfand wrote the original draft; and A. Moss was responsible for project administration.
Footnotes
Published online ahead of print. Publication date available at www.jasn.org.
- Copyright © 2022 by the American Society of Nephrology
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