Relationship Between the Prognostic Expectations of Seriously Ill Patients Undergoing Hemodialysis and Their Nephrologists

Abstract

IMPORTANCE Patients undergoing hemodialysis have an annual mortality rate exceeding 20%, comparable to many types of cancer. Past research has shown that patients with cancer overestimate their likelihood of survival relative to their physicians, but this relationship has not been examined in patients with noncancer diagnoses. Perceptions of prognosis and transplant candidacy may influence goals of care.OBJECTIVES To compare the perceptions of hemodialysis patients and their nephrologists concerning prognosis and the likelihood of transplant; to follow actual survival; and to explore the relationship between patients' expectations and their goals of care.DESIGN We completed a medical record abstraction to estimate 1-year mortality risk among patients who underwent dialysis at any time from November 1, 2010, through September 1, 2011. We then conducted in-person interviews with eligible patients whose predicted 1-year mortality, based on validated prognostic tools, was at least 20%. We also interviewed their nephrologists. We compared patients' and physicians' expectations about 1-and 5-year survival and transplant candidacy and measured the association between patients' expectations and goals of care. We then followed actual survival using Kaplan-Meier methods.SETTING AND PARTICIPANTS Two dialysis units in Boston. Two hundred seven patients undergoing hemodialysis included in the medical record review, with 62 eligible patients interviewed.MAIN OUTCOMES AND MEASURES Predicted 1-year mortality risk using validated prognostic tools; actual survival; patients' and physicians' expectations about 1-year survival and likelihood of transplant; and patients' goals of care. RESULTSOf the 207 hemodialysis patients, 72.5% had a predicted 1-year mortality of at least 20%. Of the 80 patients eligible for interview, 62 participated (response rate, 78%). Patients were significantly more optimistic than their nephrologists about 1-and 5-year survival (P < .001 for both) and were more likely to think they were transplant candidates (37 [66%] vs 22 [39%] [P = .008]). Of the 81% of patients reporting a 90% chance or greater of being alive at 1 year, 18 (44%) preferred care focused on extending life, even if it meant more discomfort, compared with 1 (9%) among patients reporting a lower chance of survival (P = .045). Actual survival was 93% at 1 year but decreased to 79% by 17 months and 56% by 23 months. CONCLUSIONS AND RELEVANCEHemodialysis patients are more optimistic about prognosis and transplant candidacy than their nephrologists. In our sample, patients' expectations about 1-year survival were more accurate than those of their nephrologists, but their longer-term survival expectations dramatically overestimated even their 2-year survival rates. Patients' prognostic expectations are associated with their treatment preferences. Our findings suggest the need for interventions to help providers communicate effectively with patients about prognosis.

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

“…A qualitative study found that ESKD patients tended to wait for health professionals to raise ACP rather than raise it themselves 48 , while another found that nephrologists discussed EOL issues based on prognosis but struggled to identify a suitable juncture 103 . Without appropriately sensitive communication about prognosis, patients on dialysis may dramatically over-estimate their life expectancy 104 . A further study found that nurses felt uncomfortable raising ACP for fear of upsetting patients, eliciting anger from families, and being denigrated by senior staff 61 .…”

Patient- and Provider-Reported Information about Transplantation and Subsequent Waitlisting

“…If the patient is too old or is otherwise at high risk for transplantation, this should be explained to the patient during the informed consent discussion. 3 This principle of informed consent is reflected in the US Centers for Medicare and Medicaid Services requirement for providers to document on Form-2728 within 45 days of dialysis initiation either KT provision of information (KTPI) or a reason for not giving information. 4 During the first 2 years in which KTPI questions were included, only approximately 70% of incident patients with ESRD were reported by their provider to be informed at the time of Form-2728 filing.…”

The Ethics of Chronic Dialysis for the Older Patient

“…Frailty is extremely common among patients receiving hemodialysis in the United States (35) and is associated with early dialysis start and high mortality rates (36). For patients who are most frail or have multiple comorbidities, determining frailty via available tools, such as the FRAIL (Fatigue, Resistance, Ambulation, Illnesses, and Loss of Weight) (37) or Rockwood (38) index, can help address the optimism bias often encountered in patients and families with critical illness; in turn, unrealistic expectations regarding treatment benefits can be avoided (39,40). Best case/worst case scenarios can be helpful for patients and families to more accurately appreciate a full spectrum of possible outcomes.…”

“…Second, physicians often bring their biases to the bedside, which can affect the patients' perception and ultimate decision (51,69). Finally, patients and family members of seriously ill patients tend to have a significant optimism bias when faced with dire prognosis, which may affect their choices as surrogate decision-makers for their loved one (39,40). Shared decision-making that allows a patient's goals to be met as accurately as possible should still be the goal.…”