The right to die in dignity is a problem raised more often by medicine's successes than by its failures.
–Joseph Fletcher (1)
Millennia of philosophic, religious, and artistic traditions provide guidance on the profound existential questions that arise at the end of life. However, in the past decades, medical technologies have transformed our relationship with death and dying. Dialysis for kidney failure presents an especially poignant manifestation of this broader pattern as one of the first organ replacement therapies and now the most common.
Hemodialysis first became an option for treating kidney failure in the 1960s. In light of the miraculous opportunity to live with what was previously a fatal disease, patient requests to withdraw from treatment were perceived to represent a form of psychopathology or suicidality (2). Over the past several decades, there is increasing awareness of burdens and sometimes low quality of life for many people on dialysis, especially for the growing population of older adults and people with multiple comorbidities. These insights underline the importance of tailoring decisions about initiating and withholding dialysis to individual patient circumstances and goals (3) (Table).
Support for patients with kidney diseases in navigating existential challenges at the end of life
An increasing emphasis on shared decision-making around initiating and withholding dialysis is intended to support patient autonomy (3). However, this shift also brings new and complex existential challenges about the meaning and character of the end of life for people receiving dialysis. These themes are reflected in an extensive body of qualitative work from social scientists Russ, Shim, and Kaufman who conducted interviews and observed care for older adults receiving dialysis (4). The very presence of a “choice” about how much time is left or when one will die is a relatively new phenomenon that confers responsibility and perception of control to a patient or their family over what has traditionally been a mysterious and uncontrolled event (5). A choice to stop dialysis may provoke moral distress, anxiety, and guilt among patients and family members (6). Patients and families may be overwhelmed by existential questions and defer active decisions (4), in which case care reverts to a strong system default to continue dialysis. However, although dialysis treatment can extend life, it also “cannibalizes the quality of the time it creates,” and some patients describe feeling trapped in a prolonged experience in which “living and dying increasingly shade into one another” (4).
Although the end of life has always presented existential questions, advances in medical technology have changed the character of these questions, and patients with kidney failure report significant gaps in existential and supportive care needs (7). Clinician education on spiritual practices and interventions such as meditation exercises (8) may offer tools to actively support patients, and screening questions, including “Are you at peace?” (9), may serve to open a dialogue. More flexible approaches to palliative dialysis may alleviate a false dichotomy of choice between dialysis or hospice that rarely aligns with overlapping goals for both longevity and quality of life (10). Of course, no intervention will address the profound existential challenges inherent to the human condition, but simply understanding and acknowledging this complex experience for people with kidney failure represent important steps toward more person-centered care.
Footnotes
References
- 1.↑
Fletcher JF. The patient's right to die. Harper's Magazine, October 1960. Available with a subscription at https://harpers.org/archive/1960/10/the-patients-right-to-die/
- 2.↑
Abram HS, et al. Suicidal behavior in chronic dialysis patients. Am J Psychiatry 1971; 127:1199–1204. doi: 10.1176/ajp.127.9.1199
- 3.↑
Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. Clinical Practice Guideline. 2nd ed. Renal Physicians Association; October 2010. https://www.mypcnow.org/wp-content/uploads/2019/03/Renal-Dialysis-Shared-Decision-Making-Guideline.pdf
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Russ AJ, et al. “Is there life on dialysis?”: Time and aging in a clinically sustained existence. Med Anthropol 2005; 24:297–324. doi: 10.1080/01459740500330639
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Kaufman SR. Time, clinic technologies, and the making of reflexive longevity: The cultural work of time left in an ageing society. Sociol Health Illn 2010; 32:225–237. doi: 10.1111/j.1467-9566.2009.01200.x
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Moss AH. ‘At least we do not feel guilty’: Managing conflict with families over dialysis discontinuation. Am J Kidney Dis 1998; 31:868–883. doi: 10.1016/s0272-6386(98)70061-7
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Davison SN, Jhangri GS. Existential and supportive care needs among patients with chronic kidney disease. J Pain Symptom Manage 2010; 40:838–843. doi: 10.1016/j.jpainsymman.2010.03.015
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Bennett PN, et al. Improving wellbeing in patients undergoing dialysis: Can meditation help? Semin Dial 2018; 31:59–64. doi: 10.1111/sdi.12656
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Steinhauser KE, et al. “Are you at peace?”: One item to probe spiritual concerns at the end of life. Arch Intern Med 2006; 166:101–105. doi: 10.1001/archinte.166.1.101
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Ernecoff NC, et al. Description and outcomes of an innovative concurrent hospice-dialysis program. J Am Soc Nephrol 2022; 33:1942–1950. doi: 10.1681/asn.2022010064
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Zimmermann CJ, et al. Opportunities to improve shared decision making in dialysis decisions for older adults with life-limiting kidney disease: A pilot study. J Palliat Med 2020; 23:627–634. doi: 10.1089/jpm.2019.0340
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Davison SN. Personalized approach and precision medicine in supportive and end-of-life care for patients with advanced and end-stage kidney disease. Semin Nephrol 2018; 38:336–345. doi: 10.1016/j.semnephrol.2018.05.004
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Lam DY, et al. A conceptual framework of palliative care across the continuum of advanced kidney disease. Clin J Am Soc Nephrol 2019; 14:635–641. doi: 10.2215/cjn.09330818
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Davison SN, et al. Recommendations for the care of patients receiving conservative kidney management: Focus on management of CKD and symptoms. Clin J Am Soc Nephrol 2019; 14:626–634. doi: 10.2215/cjn.10510917
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Lo B, et al.; Working Group on Religious and Spiritual Issues at the End of Life. Discussing religious and spiritual issues at the end of life: A practical guide for physicians. JAMA 2002; 287:749–754. doi: 10.1001/jama.287.6.749