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Original Investigation
Sharing Medicine
January 22, 2019

Care Practices for Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis

Author Affiliations
  • 1Health Service Research and Development Center, Veterans Affairs Puget Sound Health Care System, Seattle, Washington
  • 2Department of Medicine, University of Washington, Seattle
  • 3Department of Health Services, University of Washington, Seattle
JAMA Intern Med. 2019;179(3):305-313. doi:10.1001/jamainternmed.2018.6197
Key Points

Question  How do patient decisions to forgo dialysis unfold in real-world clinical settings?

Findings  In a qualitative analysis of the medical record notes of 851 patients with advanced kidney disease who decided to forgo maintenance dialysis, 3 prominent themes emerged: (1) clinicians did not readily accept patients’ wishes not to start dialysis, (2) clinicians decided particular patients were not candidates for dialysis seemingly without consideration of the patients’ goals and values, and (3) clinicians seemed to believe they had little more to offer patients who would not be starting dialysis.

Meaning  There is need for more patient-centered models of care for advanced kidney disease capable of supporting those who do not wish to start dialysis.

Abstract

Importance  Although maintenance dialysis is a treatment choice with potential benefits and harms, little is known about care practices for patients with advanced chronic kidney disease who forgo this treatment.

Objective  To describe how decisions not to start dialysis unfold in the clinical setting.

Design, Setting, and Participants  A qualitative study was performed of documentation in the electronic medical records of 851 adults receiving care from the US Veterans Health Administration between January 1, 2000, and October 1, 2011, who had chosen not to start dialysis. Qualitative analysis was performed between March 1, 2017, and April 1, 2018.

Main Outcomes and Measures  Dominant themes that emerged from clinician documentation of clinical events and health care interactions between patients, family members, and clinicians relevant to the decision to forgo dialysis.

Results  In the cohort of 851 patients (842 men and 9 women; mean [SD] age, 75.0 [10.3] years), 567 (66.6%) were white. Three major dynamics relevant to understanding how decisions to forgo dialysis unfolded were identified. The first dynamic was that of dialysis as the norm: when patients expressed a desire to forgo dialysis, it was unusual for clinicians to readily accept patients’ decisions. Clinicians tended to repeatedly question this preference over time, deliberated about patients’ competency to make this decision, used a variety of strategies to encourage patients to initiate dialysis, and prepared for patients to change their minds and start dialysis. The second dynamic arose when patients were not candidates for dialysis: clinicians viewed particular patients as not candidates or appropriate for dialysis, usually on the basis of specific characteristics and/or expected prognosis, rather than after consideration of patients’ goals and values. When clinicians decided patients were not candidates for dialysis, there seemed to be little room for uncertainty in these decisions. The third dynamic occurred when clinicians believed they had little to offer patients beyond dialysis: when it was clear that patients would not be starting dialysis, nephrologists often signed off from their care and had few recommendations other than referral to hospice care.

Conclusions and Relevance  These findings describe an all-or-nothing approach to caring for patients with advanced chronic kidney disease in which initiation of dialysis served as a powerful default option with few perceived alternatives. Stronger efforts are needed to develop a more patient-centered approach to caring for patients with advanced chronic kidney disease that is capable of proactively supporting those who do not wish to start dialysis.

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    1 Comment for this article
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    Tip of the Iceberg
    Allen Nissenson, Emeritus Prof Med, UCLA | Chief Medical Officer, DaVita Kidney Care
    The results of this study are not news to practicing nephrologists. The conclusion that "...initiation of dialysis [serves] as a powerful default option" is one that I would modify: Initiation of in-center hemodialysis serves as a powerful default option. Persons with chronic kidney disease (CKD) who are progressing toward a decision regarding future therapy are often not educated regarding the range of options they have, based on their own personal life goals. Over half of incident dialysis patients have not seen a nephrologists prior to developing ESRD, so the lack of planning for future care is not a surprise. What is of concern are the large group of patients who have been followed by a nephrologist but still do not know what all of the treatment options are. They needs to be a commitment to work with all CKD patients to understand what is important to them as their kidney function progressively decline. Better quality of life? Longer life? Ability to travel? Autonomy in care? etc. etc. It is then incumbent on us as health professionals to discuss all options including active medical management, pre-emptive transplantation, home therapy including both peritoneal dialysis and hemodialysis, and in-center dialysis including standard thrice-weekly as well as nocturnal. It is only when we truly deliver person-centered care, engaging the patient and other caregivers as active participants, that we will be fulfilling our sacred obligation as practitioners. We should never forget what William Osler said: "The good physician treats the disease. The great physician treats the patient who has the disease.".
    CONFLICT OF INTEREST: Current full time employee of DaVita Kidney Care
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