A Novel Education System to Createcustomized Primary Palliative Care Curricula for Training Programs.

Clinicians need palliative care (PC) skills to provide good patient care. Primary PC (PPC) is the PC knowledge and skills provided by non-PC specialists and are distinct from specialist PC (SPC), the complex interventions provided by specialty trained clinicians. There is no consensus as to the specific PPC knowledge and skills that should be taught or the methods that should be used. We describe an educational system that incorporates a suite of tools that PC educators can easily adapt to the PC educational requests of training programs to evaluate the PPC educational needs of training programs and then to create customized educational programs that regularly adjusts to the input of trainees and faculty. We hope others can use this program to decrease the burden on the PC educators and provide a tailored PPC education program for training programs within their institutions.

A Scoping Review of Palliative Care for Adults with Huntington's Disease: Current Practice and Future Directions.

Context: Huntington's disease (HD) is a neurodegenerative disorder characterized by mid-life onset, cognitive decline, and behavioral disturbance. Objective: We conducted a review of the end-of-life (EOL) experience of HD patients and their families. Methods: We searched 5 electronic databases. Eligible studies were published in English and contained outcomes related to PC, end-of-life (EOL), advance directives (ADs), symptom management, or hospice use for HD adults. Results: We screened 1566 studies, assessed 244 studies, and included 27 studies. Symptom Prevalence: Decedent data showed greater likelihood of pneumonia, choking, nutritional deficiencies, and skin ulcers. HD patients in hospice experienced pain, anxiety, nausea, and dyspnea. Psychiatric symptoms included dysphoria, agitation, irritability, apathy, and anxiety. Psychosis is associated with worse cognition, function, and behavioral disturbance. Symptom Management: Electroconvulsive therapy (ECT) and venlafaxine improved depression. Suicidal ideation improved with talking, self-management, medication, and discussing EOL wishes. Tetrabenazine improved chorea. Experience as Illness Progressed: HD patients require home care within two years of diagnosis. Only one study reported use of palliative care services (4%). HD patients are admitted to the hospital late in disease course and are often discharged to long-term care facilities (LTCF). Advance Care Planning: Two studies created tools to navigate EOL decisions. Most HD patients had EOL wishes; only familiarity with HD predicted having EOL wishes. Few had ADs or discussed EOL wishes with their families. Clinicians drive EOL discussions. Views on physician-assisted death (PAD) and euthanasia varied widely. Conclusions: Research is needed to further assess the PC needs of HD patients and to provide care recommendations.

Barriers and Facilitators to Discussing Goals of Care among Nephrology Trainees: A Qualitative Analysis and Novel Educational Intervention.

Background: Goals of care (GOC) conversations are critical to advance care planning but occur infrequently in nephrology. National workshops have improved trainee comfort with initiating GOC conversations but lack interface with palliative subspecialists and can incur travel-related costs. We developed an educational intervention focused on GOC conversations for nephrology trainees that incorporated into routine schedules and offered feedback from palliative subspecialists. Objective: To explore barriers and facilitators to discussing GOC and uncover perceptions of GOC-related behavior change post-intervention. Design: Qualitative study. Setting/Subjects: Sixteen nephrology trainees at an academic medical center. Measurements: Analyses of semistructured interviews occurred in phases: (1) isolation of quotes; (2) development of a coding system; and (3) creation of a framework of interrelationships between quotes using an inductive/deductive approach. Results: We captured the following themes: (1) prior knowledge (ability to define GOC, knowledge of communication frameworks and prognostic data, exposure to outpatient GOC conversations; (2) attitudes related to GOC conversations (responsibility, comfort, therapeutic alliance, patient preparedness, partnership with care teams); and (3) potential change in behaviors (increased likelihood to initiate GOC conversations early, more accurate identification of patients appropriate for a GOC conversation). Conclusions: Prior knowledge of, exposure to, and attitudes toward advance care planning were key determinants of a nephrology trainees' ability to initiate timely GOC conversations. After our intervention, trainees reported increased comfort with and likelihood to initiate GOC conversations and an improved ability to identify appropriate candidates. Our intervention may be a novel, feasible way to coach nephrologists to initiate timely GOC conversations.

Serious Illness Treatment Preferences for Older Adults with Advanced CKD.

BACKGROUND: Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences. METHODS: Nephrology clinic patients age ≥60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared. RESULTS: Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers. CONCLUSIONS: Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.

Effects of a Primary Palliative Care Educational System for Teaching Learners at Different Levels of Training.

Interest and appreciation for palliative care (PC) has resulted in increased demand for both PC services and education. The PC rotation has been shown to improve PC knowledge in medical students (MS) and internal medicine (IM) residents, and PC specialists stand poised to direct the primary PC education of learners at different levels of training. To concurrently teach learners of different levels of training on a busy PC service, we created an educational system that emphasizes management of learner schedules, organization of teaching activities, faculty development to improve teaching skills, and learner self-evaluation. Both MS and IM residents showed an improvement in self-assessed competence as well as increased comfort level with seriously ill patients after PC rotation. Careful adjustment of learner schedules has accommodated an increasing number of learners, while maintaining a low learner to faculty ratio. The PC educators face an exciting and daunting challenge as the number of patients with PC needs and the number of learners requesting PC experience grow. We continue to improve milestone-based PC assessment tools, to invest in faculty development, and to explore innovative ways to support PC educators as they strive to provide consistent PC education that is both useful for learners and can be incorporated into busy PC clinical practice.

Primary Palliative Care Education Programs: Review and Characterization.

BACKGROUND: Primary palliative care (PPC) education programs have arisen in response to the recognition that all clinicians need to have a basic set of knowledge and skills to provide excellent care to all patients. PPC education programs appear to vary widely, making it difficult for potential learners to find the right program to fit their needs. We have cataloged and categorized a snapshot of PPC education programs across the United States to serve as a resource for those seeking training, and for educators interested in starting or optimizing such programs. METHODS: Medical and commercial search engines (MSEs and CSEs, respectively) were used to generate a list of PPC education programs in the United States. Programs were contacted to supplement information available online, and then categorized based on intended learner, certification/degree conferred upon completion, and other characteristics. RESULTS: There was little overlap between the PPC education programs found through MSEs and CSEs. Programs found via CSEs varied with respect to intended learners, pedagogy, content, and cost. Among the minority of programs that confer a certification/degree upon completion, there is no consensus as to what these signify. CONCLUSIONS: The wide variety of PPC education programs is both a challenge to and strength of the field. We hope that this report will serve as a call to develop a standard PPC education taxonomy to help define essential components of all PPC programs, while also leaving sufficient room for programs to serve the unique needs of their local learners and patient populations.

Health Outcome Priorities of Older Adults with Advanced CKD and Concordance with Their Nephrology Providers' Perceptions.

BACKGROUND: Older adults with advanced CKD have significant pain, other symptoms, and disability. To help ensure that care is consistent with patients' values, nephrology providers should understand their patients' priorities when they make clinical recommendations. METHODS: Patients aged ≥60 years with advanced (stage 4 or 5) non-dialysis-dependent CKD receiving care at a CKD clinic completed a validated health outcome prioritization tool to ascertain their health outcome priorities. For each patient, the nephrology provider completed the same health outcome prioritization tool. Patients also answered questions to self-rate their health and completed an end-of-life scenarios instrument. We examined the associations between priorities and self-reported health status and between priorities and acceptance of common end-of-life scenarios, and also measured concordance between patients' priorities and providers' perceptions of priorities. RESULTS: Among 271 patients (median age 71 years), the top health outcome priority was maintaining independence (49%), followed by staying alive (35%), reducing pain (9%), and reducing other symptoms (6%). Nearly half of patients ranked staying alive as their third or fourth priority. There was no relationship between patients' self-rated health status and top priority, but acceptance of some end-of-life scenarios differed significantly between groups with different top priorities. Providers' perceptions about patients' top health outcome priorities were correct only 35% of the time. Patient-provider concordance for any individual health outcome ranking was similarly poor. CONCLUSIONS: Nearly half of older adults with advanced CKD ranked maintaining independence as their top heath outcome priority. Almost as many ranked being alive as their last or second-to-last priority. Nephrology providers demonstrated limited knowledge of their patients' priorities.

Nephrology Provider Prognostic Perceptions and Care Delivered to Older Adults with Advanced Kidney Disease.

BACKGROUND AND OBJECTIVES: Prognostic uncertainty is one barrier that impedes providers in engaging patients with CKD in shared decision making and advance care planning. The surprise question has been shown to identify patients at increased risk of dying. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In our prospective observational study, 488 patients ≥60 years of age with CKD stage 4 or 5 were enrolled. Binary surprise question (i.e., "Would you be surprised if this patient died in the next 12 months?") responses were recorded, and dialysis planning preferences, presence of advance care planning documentation, and care preceding death were abstracted. RESULTS: The median patient age was 71 (65-77) years old. Providers responded no and yes to the surprise question for 171 (35%) and 317 (65%) patients, respectively. Median follow-up was 1.9 (1.5-2.1) years, during which 18% of patients died (33% of surprise question no, 10% of surprise question yes; P<0.001). In patients with a known RRT preference (58%), 13% of surprise question no participants had a preference for conservative management (versus 2% of yes counterparts; P<0.001). A medical order (i.e., physician order for life-sustaining treatment) was documented in 13% of surprise question no patients versus 5% of yes patients (P=0.004). Among surprise question no decedents, 41% died at home or hospice, 38% used hospice services, and 54% were hospitalized in the month before death. In surprise question yes decedents, 39% died at home or hospice (P=0.90 versus no), 26% used hospice services (P=0.50 versus no), and 67% were hospitalized in the month before death (P=0.40 versus surprise question no). CONCLUSIONS: Nephrologists' prognostic perceptions were associated with modest changes in care, highlighting a critical gap in conservative management discussions, advance care planning, and end of life care among older adults with CKD stages 4 and 5 and high-risk clinical characteristics. PODCAST: This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2017_09_18_CJASNPodcast_17_11.mp3.

Differential alteration of glyceraldehyde-3-phosphate dehydrogenase (GAPDH) mRNA in the central nervous system of hens treated with diisopropylphosphorofluoridate (DFP).

A single dose (1.7 mg/kg, s.c.) of diisopropylphosphorofluoridate (DFP) causes organophosphorus ester-induced delayed neurotoxicity (OPIDN) in susceptible species. We studied the effects of DFP administration on the mRNA expression of glyceraldehyde-3-phosphate dehydrogenase (GAPDH), an important glycolytic protein at different time points (1, 2, 5, 10 and 20 days) post-treatment. Total RNA was extracted from cerebrum, cerebellum, brainstem, midbrain, and spinal cord of the control and DFP-treated hens, and northern blots were prepared using standard protocols and hybridized with GAPDH, as well as beta-actin and 28S RNA cDNA (control) probes. There was a distinct spatial/temporal mRNA expression pattern for the different tissues studied. Non-susceptible tissue, cerebrum showed a dramatic increase in GAPDH mRNA at day 1, post-treatment and levels remained high at all time points, suggestive of protective mechanisms from the beginning. In contrast, highly susceptible tissues like brainstem, spinal cord and midbrain showed either no elevation or slight down-regulation at day 1, suggesting trauma and cell injury/cell death. Overall, there was moderate level of induction during the subsequent time points in these tissues, indicative of pathways of either recovery or degeneration. Cerebellum being the less susceptible tissue showed moderate increase initially, followed by higher induction, suggestive of rapid recovery. Our current data on GAPDH provides an important link in this complex network of molecular changes involving pathways identified by our group and others, such as nitric oxide (NO), CaM kinase-II (CaMK-II), protein kinase-A (PKA), c-fos, and phosphorylated-CREB (p-CREB) in DFP-induced OPIDN.