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.

Advance care planning with patients on hemodialysis: an implementation study.

Background: Patients with end-stage kidney disease (ESKD) on hemodialysis have limited life expectancy, yet their palliative care needs often go unmet. The aim of this study was to identify barriers and facilitators for implementation of "Shared Decision Making and Renal Supportive Care" (SDM-RSC), an intervention to improve advance care planning (ACP) for patients with ESKD on hemodialysis.

Methods: The Consolidated Framework for Implementation Research (CFIR) was the organizing framework for this study.

Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases.

Including target populations in the design and implementation of research trials has been one response to the growing health disparities endemic to our health care system, as well as an aid to study generalizability. One type of community-based participatory research is "Patient Centered-Research", in which patient perspectives on the germane research questions and methodologies are incorporated into the study. The Patient-Centered Outcomes Research Institute (PCORI) has mandated that meaningful patient and stakeholder engagement be incorporated into all applications.

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.

Advance care planning: a qualitative study of dialysis patients and families.

Background And Objectives: More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.

Design, Setting, Participants, & Measurements: In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites.

A palliative approach to dialysis care: a patient-centered transition to the end of life.

As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients' informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use.

Prevalence of formal accusations of murder and euthanasia against physicians.

Background: Little is known about how often physicians are formally accused of hastening patient deaths while practicing palliative care.

Methods: We conducted an Internet-based survey on a random 50% sample of physician-members of a national hospice and palliative medicine society.

Results: The final sample consisted of 663 physicians (response rate 53%).

The "no dialysis" option.

Increasing numbers of patients are starting dialysis who have limited prognoses for 6-month survival. The presence of multiple comorbidities, aging, and frailty contributes to this phenomenon. The rate of dialysis withdrawal has been accelerating over the past decade, and this calls into question the condition of patients who are initiating dialysis.

Autoimmune disease risk variant of IFIH1 is associated with increased sensitivity to IFN-α and serologic autoimmunity in lupus patients.

Increased IFN-α signaling is a heritable risk factor for systemic lupus erythematosus (SLE). IFN induced with helicase C domain 1 (IFIH1) is a cytoplasmic dsRNA sensor that activates IFN-α pathway signaling. We studied the impact of the autoimmune-disease-associated IFIH1 rs1990760 (A946T) single nucleotide polymorphism upon IFN-α signaling in SLE patients in vivo.

Should there be an expanded role for palliative care in end-stage renal disease?

Purpose Of Review: In this review, we outline the rationale for expanding the role of palliative care in end-stage renal disease (ESRD), describe the components of a palliative care model, and identify potential barriers in implementation.

Recent Findings: Patients receiving chronic dialysis have reduced life expectancy and high rates of chronic pain, depression, cognitive impairment, and physical disability. Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently.

Increasing hospice services for elderly patients maintained with hemodialysis.

Few dying patients undergoing dialysis receive hospice care. An intervention to facilitate hospice referral was evaluated in a longitudinal prospective cohort study. Five hemodialysis units in Massachusetts were divided into intervention sites (N = 3 clinics) and control sites (N = 2 clinics).

An integrative approach to advanced kidney disease in the elderly.

Chronic kidney disease (CKD) has increasingly become a "geriatric" disease, with a dramatic rise in incidence in the aging population. Patients aged >75 years have become the fastest growing population initiating dialysis. These patients have increased comorbid diseases and functional limitations which affect mortality and quality of life.

Predicting six-month mortality for patients who are on maintenance hemodialysis.

Background And Objectives: Prognostic information is rarely conveyed by nephrologists because of clinical uncertainty about accuracy. The objective of this study was to develop an integrated prognostic model of 6-mo survival for patients who receive hemodialysis (HD).

Design, Setting, Participants, & Measurements: A short-term prognostic model was developed using prospective data from a derivation cohort of 512 patients who were receiving HD at five dialysis clinics.

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.

Developing a renal supportive care team from the voices of patients, families, and palliative care staff.

Objective: Although half a million Americans suffer from end stage renal disease (ESRD), their quality of end-of-life care has been woefully inadequate. The Renal Supportive Care Team is a demonstration project that is designed to elicit and provide for the needs of dialysis patients and their families throughout the trajectory of their illnesses.

Method: Six focus groups, including medical health professionals, dialysis patients, family members, and bereaved family members, discussed how to promote improved palliative care and encourage hospice referral for patients with ESRD.

Maintaining quality of life at the end of life in the end-stage renal disease population.

The rapidly advancing age of incident dialysis patient has coincided with a rising mortality rate during the first year of dialysis. This is occurring despite a steady decline in mortality of prevalent patients. These statistics suggest that there is a subset of sick, elderly dialysis patients who will not survive the first 6 months of dialysis.