Advance Care Planning Training for Renal Social Workers.

End Stage Renal Disease (ESRD) is a life-limiting condition for which hospice and palliative care are not routinely provided to patients and families. While the ESRD mortality rate is close to 25%, patients on dialysis are half as likely to receive hospice services than patients with other life-limiting diagnoses. Nephrologists and dialysis social workers receive little training to effectively lead patients with ESRD and their families through the stages of dying and the completion of advance care planning. The lack of professional training, a need for greater commitment to advanced care planning from dialysis corporations, and reimbursement problems for hospice care, all contribute to low rates of hospice use within the ESRD population. An ESRD advance care training program for social workers is described that was developed as a part of a larger research project designed to increase advance care planning and referrals for hospice for those with ESRD. The goals were to help social workers become better advocates for patients and families, appreciate cultural, spiritual, racial and ethnic differences, and understand the ethical and legal issues in advance care planning. The challenges that emerged included high staff turnover and a paucity of corporate commitment to training.

Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients.

BACKGROUND: End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. METHODS/DESIGN: This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period. DISCUSSION: The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions about prognosis and end-of-life care with end-stage renal disease patients. We anticipate that the intervention will help guide hemodialysis staff and providers to effectively participate in advance care planning for patients and caretakers to establish preferences and goals at the end of life. TRIAL REGISTRATION: NCT02405312.

Trends in chronic peritoneal dialysis utilization in New England.

Utilization of chronic peritoneal dialysis (CPD) continues to decline in the United States. Technique failure remains a key factor in this decline. Center size has been associated with technique failure. Afolalu et al. observed that technique failure rates were higher in units with fewer than 25 patients. We wondered if declining CPD utilization rates are reflective of changes in small or large units. Using the 2000 overall census of individual CPD units in Network #1, New England, between January 1, 2000, and December 31, 2008, we divided the units by size: units with fewer than 25 patients, and units with 25 patients or more. The CPD patient population increased to 1264 patients in 2008 from 1238 patients in 2000 (a 2% increase). A total of 85 units provided CPD therapy in 2000, increasing to 95 units in 2008. Of the 85 units in 2000, 11 managed 25 patients or more. By 2008, 8 of those 11 units had experienced a drop in CPD census. In 2000, larger units had been caring for 547 patients in total; in 2008, larger units were caring for a total of 546 patients. In 2000, 74 units had fewer than 25 patients, and smaller units were caring for a total of 691 patients. By 2008, smaller units were caring for 718 patients in total. Our finding that larger units with 25 patients or more experienced an average decline of 34% in CPD census is a major concern. Growth in the total number of smaller units was not associated with overall CPD growth. Further studies are needed to describe the reasons for decline in CPD census noted in most of the larger units.

Knowledge and participation of front-line dialysis facility staff in end-of-life discussions.

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.

Technique failure and center size in a large cohort of peritoneal dialysis patients in a defined geographic area.

BACKGROUND: Hemodialysis (HD) and peritoneal dialysis (PD) are both viable options for renal replacement therapy. Technique failure has been shown to be a major problem in PD therapy. OBJECTIVE: To examine the relationship between center size and PD technique failure. SETTING: ESRD Network #1 (NW1). DESIGN: Retrospective review of NW1 database. PATIENTS AND METHODS: 5003 incident PD patients between 2001 and 2005 in 105 PD units were included. Patients were grouped into 2 based on center size: group A, patients in units with 25 patients. Outcome measures were analyzed for the first and second years of PD therapy. Patients were censored at transplantation, transfer to HD, or death. OUTCOME MEASURES: Technique failure and mortality reported as death in Standard Information Management Systems (SIMS) database (NW1 data system). RESULTS: Technique failure rates were significantly higher in group A for year 1 (odds ratio: 1.36, p = 0.005) and for year 2 (odds ratio: 1.35, p = 0.03). Mortality rates were not statistically different between the 2 groups. CONCLUSION: Technique failure was higher in units with 25 patients. There was no difference in mortality between the 2 groups. The majority of patients in NW1 receive care in small units.

Prevalence of protein malnutrition in children maintained on peritoneal dialysis.

A paucity of outcome measures exist for children, making evidence-based treatment guidelines difficult to establish. Serum albumin has been identified as a surrogate marker for nutritional status and morbidity/mortality in patients with end-stage renal disease (ESRD). We hypothesized that the prevalence of low serum albumin (<2.9 g/dl) in children on peritoneal dialysis (PD) may be greater, making this population at risk. Patient data were collected prospectively over 24 months (1999-2000) from all children (1-18 years) maintained on either hemodialysis (HD) or PD within the six-state New England area; 64 observations were made on 39 children on PD over the 2-year period. The mean age was 11.7+/-4.7 years (mean+/-SD). The prevalence of low serum albumin in children was 35.9% (23/64 observations) compared with 19.5% (712/3,719 observations) in adult Network ESRD patients on PD ( P<0.004). None of the 32 children (47 observations) maintained on HD exhibited low serum albumin during the data collection period. The prevalence of low serum albumin in adult HD patients was 5.5%. Dietary protein intake was estimated from a calculated protein catabolic rate (PCR). PCRs in children treated with both PD and HD were similar, averaging 1.1+/-0.4 g/kg per day (mean+/-SD). Thus, children maintained on PD are at greater risk of protein malnutrition compared with peers treated with HD and adults on PD or HD. A PCR of approximately 1 g/kg per day may not be adequate to maintain nutrition.