A survey of views and practice patterns of dialysis medical directors toward end-of-life decision making for patients with end-stage renal disease

Abstract

Background Patients with end-stage renal disease report infrequent end-of-life discussions, and nephrology trainees report feeling unprepared for end-of-life decision making, but the views of dialysis medical directors have not been studied. Aim Our objective is to understand dialysis medical directors’ views and practice patterns on end-of-life decision making for patients with ESRD. Design We administered questionnaires to dialysis medical directors during medical director meetings of three different dialysis organizations in 2013. Survey questions corresponded to recommendations from the Renal Physicians Association clinical practice guidelines on initiation and withdrawal of dialysis. Setting/participants There were 121 medical director respondents from 28 states. Results The majority of respondents felt “very prepared” (66%) or “somewhat prepared” (29%) to participate in end-of-life decisions and most (80%) endorsed a model of shared decision making. If asked to do so, 70% of the respondents provided prognostic information “often” or “nearly always.” For patients with a poor prognosis, 36% of respondents would offer a time-limited trial of dialysis “often” or “nearly always”, while 56% of respondents would suggest withdrawal from dialysis “often” or “nearly always” for those with a poor prognosis currently receiving dialysis therapy. Patient resistance and fear of taking away hope were the most commonly cited barriers to end-of-life discussions. Conclusion Views and reported practice patterns of medical directors are consistent with clinical practice guidelines for end-of-life decision making for patients with end-stage renal disease but inconsistent with patient perceptions.

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

“…However, the respondents were dispersed geographically (both in terms of region and locale), and varied in duration of practice, training vintage and volume of practice. Our survey compares reasonably well with a recent survey of dialysis directors in terms of number surveyed (190 dialysis directors versus 93 nephrologists in our survey) and response rate (64% versus 61%) [14]. The survey of nephrologist members of the RPA had a response rate of <20%, and was conducted over 10 years ago, in 2005 [11].…”

“…Similarly, in a recent survey of US dialysis directors, 95% of medical directors reported feeling ‘very’ or ‘somewhat’ prepared to participate in EOL decision making [14]. The majority of respondents in both surveys reported patient resistance or unwillingness to be the most common barrier to discussing EOL care.…”

Early withdrawal and non‐withdrawal death in the months following hemodialysis initiation: A retrospective cohort analysis

“…The growth in the prevalent dialysis population has been driven mainly by increases in longevity. 1,2 Consequently, appropriate use of conservative care for end-stage renal disease (ESRD), [3][4][5][6] palliative care in nephrology, [7][8][9][10][11][12] and elective withdrawal from dialysis [13][14][15][16][17][18][19] are issues currently engaging the nephrology community.…”

Advance Directives and End-of-Life Care among Nursing Home Residents Receiving Maintenance Dialysis

“…Misplaced financial incentives favoring the volume rather than value of ESRD care has fueled care fragmentation and over-reliance on high-cost acute care. Fragmentation of care contributes to a lack of clarity around which provider should be responsible for initiating advance care planning (16,17). In addition, access to hospice services is contingent on dialysis discontinuation for most patients, a policy which may have the unintended consequence of delaying advance care planning for those patients whose goals and preferences are primarily palliative, but wish to continue dialysis.…”