The goal of advance care planning (ACP) is to help elucidate, clarify, and communicate patients’ values, goals, and care preferences.1 Engaging patients and their families in an iterative and ongoing process of ACP can help to ensure that they receive care that is congruent with their core values in situations where they may be unable to speak or advocate for themselves.1–3 During ACP, patients’ preferences related to cardiopulmonary resuscitation and other treatments along with their preferred surrogate decision maker(s) are typically documented in their medical record (e.g., advance directive, do-not-resuscitate [DNR] order, Provider Orders for Life Sustaining Treatment, and Medical Orders for Life Sustaining Treatment). To uphold personhood throughout the course of illness and across the continuum of care, ACP should ideally be integrated with patients’ other care processes; informed by their evolving experience of illness, prognostic awareness, and understanding of treatment options; and grounded in their cultural and social identities.4 Having an opportunity to engage in ACP is especially important for patients with ESKD as many have limited life expectancy and will face complex medical decisions during the course of illness. Also, a disproportionate number of patients with ESKD are Black, a population with relatively low rates of advance directive completion.4,5
In this issue of JASN, Danziger et al.6 describe their work to characterize documentation of DNR orders among patients with different underlying health conditions on the basis of national data from the Intensive Care Unit Research Institute Database. Using this novel data source, the authors were able to compare the prevalence of DNR orders among patients with ESKD admitted to an intensive care unit (ICU) over a 1-year period with that among patients with other serious illnesses (i.e., stroke, cancer, heart failure, dementia, chronic obstructive pulmonary disease, and cirrhosis).
The adjusted odds of dying in the hospital was 47% higher for patients with ESKD compared with the reference group of patients without any of the aforementioned health conditions. However, unlike patients with other serious illnesses, those with ESKD were no more likely than the reference group to have a DNR order in place at the time of ICU admission. Although the interaction term for race did not reach statistical significance, the apparent disconnect between practice and prognosis seemed to be most pronounced among Black patients with ESKD who were no more likely to have a DNR order than Black cohort members without underlying health conditions, despite having a 62% higher adjusted odds of dying in the hospital. Overall, 12% of patients with ESKD changed their code status to DNR while in the ICU, compared with 8% of those without ESKD. In adjusted analysis, patients with ESKD were 43% more likely to transition to DNR status during an ICU stay than those without ESKD, usually within the first few days after admission.
These findings add granularity to earlier work documenting relatively low rates of completion of advance directives,7 intensive patterns of end-of-life care,8–10 unfavorable family ratings of quality of end-of-life care,9 and racial-ethnic disparities in both ACP and intensity of end-of-life care among patients with ESKD.11,12 Because intensive life-prolonging interventions represent the default option in many health systems, failure to engage in ACP can expose patients to care that is incongruent with their values and goals. This is an especially prominent concern for the substantial number of patients with ESKD who say they would want to prioritize comfort and relief of suffering over life prolongation if they were seriously ill or dying.13,14 Observational studies in patients with ESKD suggest that timely engagement in ACP is associated with less intensive patterns of end-of-life care.15–17 Although there have been very few interventional studies of ACP in patients with ESKD, limited trial data suggest that engagement in ACP can also help the surrogate decision makers of patients with ESKD to prepare for their role and reduce their levels of anxiety, depression, and distress after the patient’s death.16
The study by Danziger et al.6 is important because most patients with ESKD spend at least some time in an ICU and episodes of critical illness are relatively common among members of this population. This is especially true as patients approach the end of life. Among fee-for-service Medicare beneficiaries with ESKD, >60% were admitted to the ICU at least once during the last 90 days of life.18 The ICU is thus an important part of the health care landscape for patients with ESKD, and ICU teams probably play a significant role in shaping the care that many of these patients receive at the end of life.
The authors’ findings raise important questions that could motivate more detailed work to characterize the care of critically ill patients with ESKD and identify opportunities to optimize their experiences and those of their family members. For example, why, despite comparatively high in-hospital mortality rates, were patients with ESKD less likely than those without underlying health conditions (and those with other serious illnesses) to have a DNR order in place at the time of ICU admission? Additionally, why did there seem to be an especially large disconnect between mortality rates and the prevalence of DNR orders among Black versus White patients with ESKD? Although not a primary focus of the paper, one also wonders why patients with ESKD were more likely than other groups to transition to DNR status while in the ICU. More broadly, because documentation of treatment preferences is only as meaningful as the conversations on which it is based, these findings beg the question of whether the presence or absence of a DNR order at the time of ICU admission was an accurate reflection of the values and goals of individual patients. Perhaps most importantly, one wonders whether the care that patients received while in the ICU honored what mattered most to them and to what extent this was supported by the presence or absence of a DNR order.
The bird’s eye view of resuscitation status for patients with ESKD admitted to the ICU afforded by the study by Danziger et al.6 broadens our understanding of care practices for seriously ill patients with ESKD. A more detailed characterization of the arc of care planning, clinical decision making, and experience of illness for members of this population could provide a deeper understanding of these findings, offer insight into the role of ICU teams in shaping end-of-life care for members of this population, and identify opportunities to optimize care and uphold personhood when patients with ESKD become critically ill.
Disclosures
A. O’Hare reports personal fees from the American Society of Nephrology; Chugai Pharmaceutical Co. Ltd.; the DEVENIR Foundation; Dialysis Clinic, Inc.; Fresenius Medical Care; the Hammersmith Hospital; the Health and Aging Policy Fellows Program; the Japanese Society for Dialysis Therapy; Kaiser Permanente Southern California; New York Society of Nephrology; the University of Alabama; the University of California, San Francisco; the University of Pennsylvania; and UpToDate, outside the submitted work. The remaining author has nothing to disclose.
Funding
J. Scherer is supported by National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Career Development Award K23DK125840 and a National Kidney Foundation Young Investigator g. A. O’Hare reports receiving research grants from the Centers for Disease Control and Prevention, NIDDK, and the Veterans Affairs Health Services Research and Development; and operational project support from the Veterans Affairs National Center for Ethics in Health Care, during the conduct of the study.
Acknowledgments
The content of this article reflects the personal experience and views of the author(s) and should not be considered medical advice or recommendations. The content does not reflect the views or opinions of the American Society of Nephrology (ASN) or JASN. Responsibility for the information and views expressed herein lies entirely with the author(s).
Footnotes
Published online ahead of print. Publication date available at www.jasn.org.
See related article, “Use of Do-Not-Resuscitate Orders for Critically Ill Patients with ESKD,” on pages 2393–2399.
References
- 1.Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. : Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 53: 821–832.e1, 2017. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Sabatino CP: The evolution of health care advance planning law and policy. Milbank Q 88: 211–239, 2010. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Institute of Medicine (US) Committee on Approaching Death: Addressing Key End-of-Life Issues : Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life, Washington, DC, National Academies Press, 2015 [PubMed] [Google Scholar]
- 4.Wicks MN, Alejandro J, Bertrand D, Boyd CJ, Coleman CL, Haozous E, et al. : Achieving advance care planning in diverse, underserved populations. Nurs Outlook 66: 311–315, 2018. [DOI] [PubMed] [Google Scholar]
- 5.Johnson KS, Kuchibhatla M, Tulsky JA: What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc 56: 1953–1958, 2008. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Danziger J, de la Hoz M, Celi L, et al. : Use of do-not-resuscitate order for critically ill patients with ESKD. J Am Soc Nephrol 31: 2393–2399, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Kurella Tamura M, Liu S, Montez-Rath ME, O’Hare AM, Hall YN, Lorenz KA: Persistent gaps in use of advance directives among nursing home residents receiving maintenance dialysis. JAMA Intern Med 177: 1204–1205, 2017. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Wachterman MW, Lipsitz SR, Lorenz KA, Marcantonio ER, Li Z, Keating NL: End-of-life experience of older adults dying of end-stage renal disease: A comparison with cancer. J Pain Symptom Manage 54: 789–797, 2017. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Wachterman MW, Pilver C, Smith D, Ersek M, Lipsitz SR, Keating NL: Quality of end-of-life care provided to patients with different serious illnesses. JAMA Intern Med 176: 1095–1102, 2016. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Wong SP, Kreuter W, O’Hare AM: Treatment intensity at the end of life in older adults receiving long-term dialysis. Arch Intern Med 172: 661–663, 2012. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Eneanya ND, Olaniran K, Xu D, Waite K, Crittenden S, Hazar DB, et al. : Health literacy mediates racial disparities in cardiopulmonary resuscitation knowledge among chronic kidney disease patients. J Health Care Poor Underserved 29: 1069–1082, 2018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Eneanya ND, Wenger JB, Waite K, Crittenden S, Hazar DB, Volandes A, et al. : Racial disparities in end-of-life communication and preferences among chronic kidney disease patients. Am J Nephrol 44: 46–53, 2016. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.O’Hare AM, Kurella Tamura M, Lavallee DC, Vig EK, Taylor JS, Hall YN, et al. : Assessment of self-reported prognostic expectations of people undergoing dialysis: United States Renal Data System Study of Treatment Preferences (USTATE). JAMA Intern Med 179: 1325–1333, 2019. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Saeed F, Sardar MA, Davison SN, Murad H, Duberstein PR, Quill TE: Patients’ perspectives on dialysis decision-making and end-of-life care. Clin Nephrol 91: 294–300, 2019. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Kurella Tamura M, Montez-Rath ME, Hall YN, Katz R, O’Hare AM: Advance directives and end-of-life care among nursing home residents receiving maintenance dialysis. Clin J Am Soc Nephrol 12: 435–442, 2017. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Song MK, Ward SE, Fine JP, Hanson LC, Lin FC, Hladik GA, et al. : Advance care planning and end-of-life decision making in dialysis: A randomized controlled trial targeting patients and their surrogates. Am J Kidney Dis 66: 813–822, 2015. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Schmidt RJ, Weaner BB, Long D: The power of advance care planning in promoting hospice and out-of-hospital death in a dialysis unit. J Palliat Med 18: 62–66, 2015. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Saran R, Robinson B, Abbott KC, Agodoa LYC, Bragg-Gresham J, Balkrishnan R, et al. : US Renal Data System 2018 annual data report: Epidemiology of kidney disease in the United States. Am J Kidney Dis 73[Suppl 1]: A7–A8, 2019. [DOI] [PMC free article] [PubMed] [Google Scholar]
