Dr. Megan Urbanski (@MeganUrbanski) is currently an Assistant Professor in the Department of Surgery, Division of Transplantation, in the Emory University School of Medicine. She received a master’s degree in clinical social work from the University of Pennsylvania and worked for several years as a nephrology and transplant social worker prior to obtaining a PhD in Public Health with a concentration in the Social and Behavioral Sciences from Temple University. She also completed a postdoctoral research fellowship in Health Services Research at Emory University. She has experience conducting qualitative, mixed methods, community engaged, and implementation research. Her specific research interests include the kidney failure transition experience, psychosocial evaluation criteria for transplant, and nephrology workforce issues.
Advanced chronic kidney disease and kidney failure are far from benign illnesses, and most patients suffer from an increased risk of serious comorbidities and mortality, with an estimated 15-20% risk of death 1 year post dialysis-initiation, and a 5-year survival rate of less than 50%.1,2 Further, nearly 15% of patients receiving dialysis ultimately make the decision to withdraw dialysis care prior to death.2 Although kidney transplant is associated with better survival and better quality of life relative to dialysis for many patients, it is also not without substantial risks and side effects. These risks range from post-operative surgical complications, risk for serious infection, and other side effects from prolonged immunosuppressive medication use, including increased risk for other organ damage, stroke and cognitive impairment, and increased incidence of cancer3 For these reasons, it is imperative that patients with advanced chronic kidney disease, even those who are actively pursuing life-prolonging treatment via transplantation, are afforded comprehensive education and opportunities to receive palliative care to help them manage their illness and accompanying symptoms and also make advance care plans.4t
Much of the existing literature on advance care planning and palliative care in kidney failure centers around patients receiving dialysis, and these data suggest that few patients on dialysis are meaningfully engaged around advanced care plans, especially as it pertains to their kidney disease and treatment and few receive palliative care.5-8 However, less is known about the advance care plans and receipt of palliative care services among kidney transplant candidates and recipients. Fisher et al. sought to fill this important knowledge gap and reported findings from their rigorous single-center prospective cohort study on receipt of documented advanced care planning and palliative care consultations among more than 2,500 kidney transplant candidates and 1,200 kidney transplant recipients at Johns Hopkins Hospital from the years 2008 to 2020.9 Their findings revealed that about one-fifth of kidney transplant candidates and 35% of kidney transplant recipients in the cohort had documented advance care planning via the presence of advance directive documents in the medical record, documentation of a goals-of-care discussion, or patient self-report that advance directives were completed; very few patients in the study received a palliative care consultation.9 Notably, Black kidney transplant candidates and kidney transplant recipients were less likely to have engaged in advance care planning compared to white candidates and recipients.9 The racial and ethnic disparities in engagement in advance care planning among the study participants are reflective of disparities among the general population, as noted by the study’s authors.10 Other studies have found that healthcare providers often experience discomfort engaging patients of different races, ethnicity, language, and religion from themselves around sensitive topics such as advance care planning, leading to subsequent reluctance to even initiate the conversation.11 This highlights the urgent importance of increasing diversity in the nephrology and transplant workforces to improve culture, language, and race concordance between providers and patients.12 The evidence suggests that provider-patient culture, race, and language concordance result in improved communication and increased patient satisfaction.13
In their paper, the authors described how advance care planning is routinely assessed upon hospital admission at their institution,9 which is a common practice. However, this may be part of the problem. Hospital admissions often occur within the chaotic environment of the emergency department or during complex and sudden transfers of care from other settings and patients may understandably be feeling physically unwell and under emotional distress. It is likely that this is far too stressful of a time to address a serious and complex matter that can have practical, religious, and legal considerations. The question may also catch patients off-guard and inadvertently frighten or introduce unnecessary anxiety to the patient if they are uninformed. This article highlights that advance care planning, palliative care needs, and goals of care discussions are not “one and done” tasks to check off a to-do list, but require intentional and ongoing discussion as well as periodic check-ins, initiated by the provider.4 It also highlights the importance of evidence-based communication skills training for providers in order to facilitate truly informed and shared decision-making around patients’ goals of care. Theoretical frameworks such as the Communication Model of Shared Decision Making (CMSDM), can be useful to illustrate how specific patient-, provider-, and environmental-level constructs interact to affect shared decision making.14
Surprisingly, the authors found that kidney transplant candidates who were actively receiving dialysis were less likely to have engaged in advance care planning compared to preemptive transplant candidates not yet on dialysis.9 This is surprising for a few reasons. First, given the elevated risk of serious comorbidity and mortality associated with chronic dialysis, one might expect patients receiving dialysis to be more engaged with advance care planning. Second, the Centers for Medicare & Medicaid Services (CMS) Conditions for Coverage for End-Stage Renal Disease Facilities mandates that all patients are informed of their right to refuse dialysis treatment and given information on advance care planning.15 Third, CMS also requires all dialysis facilities have master’s trained social workers who are often trained in palliative care and end-of-life issues, as well as evidence-based counseling techniques, and are thus uniquely qualified to assist with these discussions.15,16 The low rates of advance care planning among kidney transplant candidates in the study population may be explained by the relatively short dialysis vintage (mean time on dialysis: 0.8 years) – perhaps there simply had not been time to get to get to advance care planning due to other, more pressing issues during the adjustment to dialysis. The low rates may also be a consequence of high caseloads and burdensome administrative tasks among dialysis social workers, preventing them from meaningfully engaging patients in these discussions.17-19
As the authors noted, the study’s single-center design and exclusion of non-English-speaking participants likely limit its generalizability. The study’s findings highlight the need for urgent and targeted interventions to close the gap in provision of advance care planning services and increase access to palliative care for kidney transplant candidates and recipients. However, where there are challenges, there are opportunities. Future work should include communication skills training and shared decision-making interventions that involve diverse members of the dialysis and transplant care teams – including nephrologists and dialysis and transplant social workers. Finally, the study’s findings serve as an important reminder that all patients with kidney failure – even those with life-prolonging and -enhancing kidney transplants deserve support and engagement around advance care planning and palliative care.
References
- Heaf J, Heiro M, Petersons A, et al. First-year mortality in incident dialysis patients: results of the Peridialysis study. BMC Nephrol. Jun 27 2022;23(1):229. doi:10.1186/s12882-022-02852-1
- United States Renal Data System. 2023 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. 2023. https://adr.usrds.org/2023
- Canet E, Zafrani L, Azoulay É. The Critically Ill Kidney Transplant Recipient: A Narrative Review. Chest. Jun 2016;149(6):1546-55. doi:10.1016/j.chest.2016.01.002
- Urbanski M, Plantinga LC. Best-Laid Plans: Can a “Life-Plan” Improve the Concordance of Kidney Disease Care with Patient Preferences? Kidney360. Jun 1 2023;4(6):e717-e719. doi:10.34067/kid.0000000000000139
- Feely MA, Hildebrandt D, Edakkanambeth Varayil J, Mueller PS. Prevalence and Contents of Advance Directives of Patients with ESRD Receiving Dialysis. Clin J Am Soc Nephrol. Dec 7 2016;11(12):2204-2209. doi:10.2215/cjn.12131115
- Kurella Tamura M, Goldstein MK, Pérez-Stable EJ. Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients. Nephrol Dial Transplant. Jan 2010;25(1):237-42. doi:10.1093/ndt/gfp430
- Chettiar A, Montez-Rath M, Liu S, Hall Y, O’Hare A, Tamura M. Association of inpatient palliative care with health care utilization and postdischarge outcomes among Medicare beneficiaries with end stage kidney disease. Clinical journal of the American Society of Nephrology: CJASN. 2018;13(8):1180.
- Wen Y, JIang C, Koncicki H, et al. Trends and Racial Disparities of Palliative Care Use among Hospitalized Patients with ESKD on Dialysi. J Am Soc Nephrol. 2019;30(9):1687-1696.
- Fisher MC, Chen X, Crews DC, et al. Advance Care Planning and Palliative Care Consultation in Kidney Transplantation. Am J Kidney Dis. Mar 2024;83(3):318-328. doi:10.1053/j.ajkd.2023.07.018
- Bazargan M, Cobb S, Assari S, Kibe LW. Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults. Am J Hosp Palliat Care. Jun 2021;38(6):601-609. doi:10.1177/1049909121991522
- Ashana DC, D’Arcangelo N, Gazarian PK, et al. “Don’t Talk to Them About Goals of Care”: Understanding Disparities in Advance Care Planning. The Journals of Gerontology: Series A. 2021;77(2):339-346. doi:10.1093/gerona/glab091
- Butler T, Cummings LS, Purnell TS. The Case for Prioritizing Diversity in the Transplantation Workforce to Advance Kidney Health Equity. J Am Soc Nephrol. Oct 2022;33(10):1817-1819. doi:10.1681/asn.2022040429
- Cooper L, Powe N. Disparities in patient experiences, health care processes, and outcomes: the role of patient-provider racial, ethnic, and language concordance. August 1 2004;
- Siminoff LA, Step MM. A communication model of shared decision making: accounting for cancer treatment decisions. Health Psychol. Jul 2005;24(4s):S99-s105. doi:10.1037/0278-6133.24.4.S99
- 73 Conditions for Coverage for End-Stage Renal Disease Facilities. Final rule. 20369-484 (2008).
- Browne T, Merighi, J.R., Washinto, T., Savage, T., Shaver, C. & Holland K. Nephrology social work. Hanbook of health social work. John Wiley & Sons; 2019.
- Merighi J. Changes in Dialysis Social Workers’ Caseloads, Job Tasks, and Hourly Wages Since the Implementation of the 2008 Conditions for Coverage. Journal of Nephrology Social Work. 2012;38:8-20.
- Merighi J, Zheng M, Browne T. Nephrology Social Workers’ Caseloads and Hourly Wages in 2014 and 2017: Findings from the National Kidney Foundation Council of Nephrology Social Workers Professional Practice Survey. 11/01 2018;42:31-59.
- Merighi J, Browne T, Bruder K. Caseloads and Salaries of Nephrology Social Workers by State, ESRD Network, and National Kidney Foundation Region: Summary Findings for 2007 and 2010. Journal of Nephrology Social Work. 2010;34:9-51.
– Post prepared by Megan Urbanski @MeganUrbanski
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To view Fisher et al (Open Access), please visit AJKD.org.
Title:Advance Care Planning and Palliative Care Consultation in Kidney Transplantation
Authors: Marlena C. Fisher, Xiaomeng Chen, Deidra C. Crews, Lyndsay DeGroot, Nwamaka D. Eneanya, Nidhi Ghildayal, Marshall Gold, Yi Liu, Justin J. Sanders, Jennifer S. Scherer, Dorry L. Segev, and Mara A. McAdams-DeMarco
DOI: 10.1053/j.ajkd.2023.07.018
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