title: Knowledge and participation of front-line dialysis facility staff in end-of-life discussions.
abstract: The Centers for Medicare & Medicaid Services' Form 2746, the Death Notification Form, was revised in 2004. In addition to questions inquiring about discontinuation of dialysis, the revised form includes questions about patient and family involvement in the decision to discontinue treatment, whether the patient had received hospice care, as well as a new Cause of Death item #104, "Withdrawal from dialysis/uremia" However Form 2746 offers no instructions or explanation on how to decide whether a death is attributable to withdrawal from dialysis/uremia or what is considered dialysis discontinuation. We conducted a standardized telephone survey (N = 338) among front-line dialysis facility professionals (staff nurses, social workers, nurse managers) in ESRD Networks 1, 5, and 12, inquiring about 448 deaths of patients who discontinued dialysis. Only 70% of front-line staff reported Form 2746 was clear on when to indicate dialysis discontinuation, and only 57% reported it was clear when to use the death code #104 for withdrawal/uremia. According to facility staff, 49% of patients in the study group actively participated in the decision to discontinue dialysis. However only 8% of staff were aware of the patient's decision to discontinue dialysis by actually participating in the decision. Front-line staff knew that 43% of patients in the study discussed end of life issues prospectively, but only 57% of patients involved in discussions about dialysis discontinuation had interaction with physicians, according to the staff. We also found regional variations in dialysis discontinuation between the three Networks that participated in the study. This data indicates a lack of discussions about end of life issues with patients, even when they do occur, and sparse communication about the occurrence of these discussions with front-line staff. The study committee consisting of experienced nephrologists in kidney disease care and experts in end of life/palliative care who provided definitions for discontinuation and withdrawal from dialysis. Dialysis facilities should identify patients that have a greater probability of discontinuation. Front-line dialysis facility staff such as nurses and social workers should be aware of end of life discussions of their patients. Dialysis facilities should also have a process in place for end of life discussions that involves the interdisciplinary team, as suggested in the recently revised Conditions for Coverage for Participation for dialysis facilities.
authors.affiliation: ESRD Network of New England, USA.
authors.forename: Jaya
authors.initials: J
authors.lastname: Bhargava
authors.forename: Michael
authors.initials: M
authors.lastname: Germain
authors.forename: Jenny
authors.initials: J
authors.lastname: Kitsen
authors.forename: Lewis M
authors.initials: LM
authors.lastname: Cohen
authors.forename: Klemens B
authors.initials: KB
authors.lastname: Meyer
mesh_terms: D058186:Acute Kidney Injury / Q000401:mortality / Q000628:therapy; D006801:Humans; D007676:Kidney Failure, Chronic / Q000401:mortality / Q000628:therapy*; D009511:New England; D011369:Professional-Patient Relations; D006435:Renal Dialysis; D013727:Terminal Care; D016312:Treatment Refusal / Q000331:legislation & jurisprudence*