Patients with Advanced CKD Describe Emotional Impact of Their Illness and Treatment

Patients with advanced chronic kidney disease (CKD) have a high symptom burden and a high prevalence of comorbid conditions, as well as limited life expectancy. Studies designed to examine patients’ healthcare experiences suggest that patient concerns can be opposed to those of providers. The Institute of Medicine defines patient-centered care as “care that is respectful of and responsive to individual patient preferences, needs, and values and [ensures] that patient values guide all clinical decisions.” There are data that indicate that for many patients with advanced CKD, major treatment decisions, including whether and when to initiate dialysis, are commonly influenced more by provider- and system-level considerations than by the goals and concerns of the patient.

Ann M. O’Hare, MD, and colleagues report on findings as part of a study on advance care planning among patients with advanced CKD that illuminate the illness experiences in that patient population, patients’ interactions with providers and the healthcare system, and their thoughts on advance care planning and care at the end of life. The researchers provided insights into the emotional impact of illness and care in these patients. The findings were reported in the Clinical Journal of the American Society of Nephrology[2018;13:1022-1029].

The single-center study on advance care planning enrolled patients receiving care in the nephrology clinic or dialysis unit at the Veterans Administration Puget Sound Health Care System in Seattle, Washington. Inclusion criteria were estimated glomerular filtration rate ≤20 mL/min/1.73 m2 on at least two occasions 3 months apart or undergoing treatment with maintenance dialysis. Study participants completed a 45- to 60-minute semistructured, one-on-one interview that included general questions about their illness experience and encounters with providers and the healthcare system as well as specific questions about their experience and perspectives on advance care planning.

Of the 56 patients with advanced CKD who received an invitation to participate in the study via mail, 27 (48%) enrolled. Mean age of enrolled patients was 62 years, 96% were men, and most self-identified as white (56%), 33% as black, and 11% as other race. At the time of the interview, 10 patients (37%) were receiving hemodialysis, five (19%) were receiving peritoneal dialysis, and 12 (44%) had not initiated dialysis.

The researchers identified three emergent themes related to patients’ emotional experiences of care and illness: (1) the emotional impact of interactions with individual providers; (2) the emotional impact of encounters with the healthcare system; and (3) the emotional impact of making sense of their illness experiences.

When providers did not appear to be concerned with patients’ experiences of illness, patients could feel a sense of mistrust, abandonment, isolation, and/or alienation; those same feelings could arise as a result of dealing with the healthcare system. In dealing with making sense of their illness, patients often worked to apportion blame, sometimes feeling personally responsible for the course of their illness. Further, patients sometimes relied on counterfactural explanations for their conditions.

One participant described feeling alienated when his provider ordered a kidney biopsy. The  patient had a pinched nerve that would make the biopsy procedure dangerous and difficult and he felt the provider was not seeing him as a whole person and did not understand his specific situation. Mistrust was often expressed as providers not informing patients about worsening kidney function associated with progression of CKD. Some participants described positive relationships with providers, while others felt their providers had little to offer beyond standard treatments and procedures, leaving them feeling abandoned and alone.

Patients were also emotionally affected by encounters with the healthcare system. When providers moved in and out of patients’ care during the course of treatment, the patient often felt a sense of mistrust. Further, discontinuity of care was perceived by some patients as contributing to their course of illness. Patients experienced a great deal of distress when providers did not work collaboratively with their colleagues.

Emotional toll was sometimes the result of seemingly mundane aspects of healthcare delivery. For example, one man who met with several providers on the same team at a day-long visit was not told until the last visit, with the nephrologist, that his renal prognosis was worse than anticipated. He was left feeling “alone and isolated” because at the end of the day he came to realize that “all [of the providers] knew my kidney function had decreased, but no one had told me.”

In addressing the survey questions on making sense of their illness, patients expressed difficulty with the question of whether and to what extent they were responsible for the course of their kidney disease. They were quick to assign blame, often blaming themselves and assuming that their kidney disease could have been prevented.

There were some limitations to the findings, including the single-center design of the study, which raises the question of transferability of the findings and the potential for bias; the small percentage of women participants; and limiting the participants to those who could provide informed consent.

In conclusion, the researchers said, “Interactions with individual providers and with the wider health system coupled with patients’ own struggle to make meaning of their illness can take a large emotional toll. Our findings suggest that a deeper appreciation of patients’ emotional experiences may offer important opportunities to improve care and highlight the need for more in-depth work in this area.”

Takeaway Points

  1. Researchers at a Veterans Administration facility in Seattle, Washington, conducted a series of semistructured interviews with patients with advanced chronic kidney disease as part of an ongoing study on advance care planning.
  2. The interviews revealed three emergent themes related to patients’ emotional experiences of care and illness: interactions with individual providers; interactions with the healthcare system; and the impact of making sense of their illness.
  3. The interviews highlighted the impact of interactions with providers and the healthcare system on patients’ emotional well-being and suggested that understanding that impact could result in improved care.