An end-of-life practice survey among clinical nephrologists associated with a single nephrology fellowship training program

Abstract

BackgroundOur nephrology fellowship requires specific training in recognition and referral of end-stage renal disease patients likely to benefit from palliative and hospice care.MethodsTo identify end-of-life (EOL) referral barriers that require greater training emphasis, we performed a cross-sectional, 17-item anonymous online survey (August–October 2015) of 93 nephrologists associated with the program since 1987.ResultsThere was a 61% response rate (57/93 surveys). Ninety-five percent practiced clinical nephrology (54/57). Of these, 51 completed the survey (55% completion rate), and their responses were analyzed. Sixty-four percent were in practice >10 years; 65% resided in the Southern USA. Ninety-two percent felt comfortable discussing EOL care, with no significant difference between those with ≤10 versus >10 years of practice experience (P = 0.28). Thirty-one percent reported referring patients to EOL care ‘somewhat’ or ‘much less often’ than indicated. The most frequent referral barriers were: time-consuming nature of EOL discussions (27%); difficulty in accurately determining prognosis for <6-month survival (35%); patient (63%) and family (71%) unwillingness; and patient (69%) and family (73%) misconceptions. Fifty-seven percent would refer more patients if dialysis or ultrafiltration could be performed in hospice. Some reported that local palliative care resources (12%) and hospice resources (6%) were insufficient.ConclusionsThe clinical nephrologists surveyed were comfortable with EOL care discussion and referral. Patient, family, prognostic and system barriers exist, and many reported lower than indicated referral rates. Additional efforts, including, but not limited to, EOL training during fellowship, are needed to overcome familial and structural barriers to facilitate nephrologist referral for EOL care.

End of Life, Withdrawal, and Palliative Care Utilization among Patients Receiving Maintenance Hemodialysis Therapy

“…Among patients who died in inpatient facilities in the Veteran Affairs health care system, only half of patients on ESKD received palliative care services compared with almost three quarters of patients with cancer (5). This underutilization may be because of the uncertainty of disease trajectory for patients with ESKD (37,38) and inadequate training in endof-life care in nephrologists (39,40). In addition, the requirement of foregoing dialysis to qualify for the hospice Medicare benefit, unless the patient has a second terminal diagnosis unrelated to kidney failure, may contribute to the low rate of hospice enrollment (or utilization) for patients with ESKD (38).…”

“…This underutilization may be because of the uncertainty of disease trajectory for patients with ESKD (37,38) and inadequate training in endof-life care in nephrologists (39,40). In addition, the requirement of foregoing dialysis to qualify for the hospice Medicare benefit, unless the patient has a second terminal diagnosis unrelated to kidney failure, may contribute to the low rate of hospice enrollment (or utilization) for patients with ESKD (38). Moreover, although our institution benefits from an outpatient palliative care clinic offering services to patients on HD, studies suggest that fewer than 20% of institutions have outpatient palliative care services available (41), making inpatient palliative care consultation the only option for the majority of patients.…”

Clinical Social Work End-Of-Life Survey: Constructive Work with Patients and Family Members on Advance Directives and Medical Orders for Life-Sustaining Treatment

“…Six percent cited a lack of available hospice resources in their region; 27% said referral and end-of-life (EOL) discussions were too time consuming; and 69% felt patients had misconceptions about end-of-life (EOL) care. Encouragingly, 92% of these nephrologists felt comfortable having EOL care discussions with their patients (Ceckowski, Little, Merighi, Browne, & Yuan, 2017).…”

“…Table 1. Nephrology Survey 2015: Barriers to EOL Discussions in ESRD Patients (Ceckowski, Little, Merighi, Browne, & Yuan, 2017) Predominant Barriers § Time-consuming nature of discussions (27%) § Difficulty in determining prognosis for < 6-month survival (35%) § Patient (63%) and family (71%) unwillingness § Patient (69%) and family (73%) misconceptions § Lack of palliative care (12%) and hospice (6%) resources…”