Determining Consistency of Surrogate Decisions and End-of-Life Care Received with Patient Goals-of-Care Preferences

Background: Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences

Meaning and Practice of Palliative Care for Hospitalized Older Adults with Life Limiting Illnesses

Objective. To illustrate distinctions and intersections of palliative care (PC) and end-of-life (EOL) services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences) and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses

Emotional Distress and Compassionate Responses in Palliative Care Decision-Making Consultations

Background: Seriously ill hospitalized patients and their loved ones are frequently faced with complex treatment decisions laden with expressions of emotional distress during palliative care (PC) consultations. Little is known about these emotional expressions or the compassionate responses providers make and how common these are in PC decision-making conversations

The transcriptional regulator Aire coopts the repressive ATF7ip-MBD1 complex for the induction of immunotolerance

The maintenance of immune tolerance requires the deletion of self-reactive T cells in the thymus. The expression of tissue-specific antigen genes (TSAs) by thymic epithelial cells is critical for this process and depends on the activity of the Autoimmune Regulator (Aire) protein, however, the molecular mechanism(s) Aire uses to target TSA gene loci are unknown. Here we identified two Aire-interacting proteins – activating transcription factor 7 interacting protein (ATF7ip) and methyl CpG binding protein 1 (MBD1) –that are required for Aire’s targeting of TSA geneloci. Moreover, Mbd1−/− mice developed pathological autoimmunity and had a defect in Aire-dependent thymic TSA gene expression underscoring the critical importance of Aire’s interaction with the ATF7ip-MBD1 protein complex in maintaining central tolerance

Tamoxifen-Induced Cre-loxP Recombination Is Prolonged in Pancreatic Islets of Adult Mice

Tamoxifen (Tm)-inducible Cre recombinases are widely used to perform gene inactivation and lineage tracing studies in mice. Although the efficiency of inducible Cre-loxP recombination can be easily evaluated with reporter strains, the precise length of time that Tm induces nuclear translocation of CreERTm and subsequent recombination of a target allele is not well defined, and difficult to assess. To better understand the timeline of Tm activity in vivo, we developed a bioassay in which pancreatic islets with a Tm-inducible reporter (from Pdx1PB-CreERTm;R26RlacZ mice) were transplanted beneath the renal capsule of adult mice previously treated with three doses of 1 mg Tm, 8 mg Tm, or corn oil vehicle. Surprisingly, recombination in islet grafts, as assessed by expression of the β-galactosidase (β-gal) reporter, was observed days or weeks after Tm treatment, in a dose-dependent manner. Substantial recombination occurred in islet grafts long after administration of 3×8 mg Tm: in grafts transplanted 48 hours after the last Tm injection, 77.9±0.4% of β-cells were β-gal+; in β-cells placed after 1 week, 46.2±5.0% were β-gal+; after 2 weeks, 26.3±7.0% were β-gal+; and after 4 weeks, 1.9±0.9% were β-gal+. Islet grafts from mice given 3×1 mg Tm showed lower, but notable, recombination 48 hours (4.9±1.7%) and 1 week (4.5±1.9%) after Tm administration. These results show that Tm doses commonly used to induce Cre-loxP recombination may continue to label significant numbers of cells for weeks after Tm treatment, possibly confounding the interpretation of time-sensitive studies using Tm-dependent models. Therefore, investigators developing experimental approaches using Tm-inducible systems should consider both maximal recombination efficiency and the length of time that Tm-induced Cre-loxP recombination occurs

Fair process as a moderator in outcomes -based explanations of community health partnership participation.

This study examined the relationship between benefits, fair process, and individual participation in community health partnerships. The model of partnership participation tested hypothesized that outcomes (in the form of benefits) and process would interact in influencing participation. The study sample consisted of 433 participants from 25 community health partnerships participating in the Community Care Network Demonstration Program. Study respondents completed the Partnership Self-Assessment Survey (PSAS) in 1998. Aspects of participation examined included both level of involvement and roles assumed. Outcomes included two types of both selective (individually-enjoyed) and collective benefits, while fair process included both procedural and interpersonal components. Overall, results showed strong evidence of direct effects of both selective and collective benefits and of fair process on different aspects of participation. These effects varied depending on whether benefits were broken out by type. The same was true for fair process, as only interpersonal fairness had a significant direct relationship with participation. There was evidence of interaction effects of fair process with benefits, and in particular interpersonal fairness with both types of selective benefits. These effects were largely positive. Finally, both direct and interactive influences on participation clearly varied between partnerships depending on their primary aims, suggesting that the outcomes-participation relationship may take different forms depending upon the organizational context. The results did not strongly support either self-interest or social identity-based accounts of the underlying mechanism of the outcome-process interaction effect. The implications of this for theory were discussed, and possible explanations based on recent procedural justice research were explored. The results suggest that partnerships need to strike a balance, working to attain outcomes while not neglecting process. Primary limitations of the study included its cross-sectional design, survey response favoring higher participating partnership members, and missing data.Ph.D.Health and Environmental SciencesHealth care managementUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/123448/2/3079502.pd

Patients’ and Family Members’ Perceptions of Palliative Care in Late-Stage Heart Failure Care

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Nursing, 2012.In an effort to improve late-stage heart failure (HF) care experts in palliative care (PC) and HF care have recommended collaboration between the two disciplines. However, little is known about the perspectives of those persons with HF and their family members (FMs) who have been referred to PC. The purpose of this qualitative descriptive study was to describe their experiences with and perceptions of PC consultations. Forty interviews were conducted with 24 persons with HF and 16 FMs. Interviews were recorded, transcribed, and analyzed using content analysis. Most participants felt ill-prepared for the PC consult as they reported being unaware of the availability of PC services or that a referral to PC had been made. For those who reported discussing the referral, the stage was set for PC. However, it was often set for PC as hospice care and participants’ perceptions of the “rules” of hospice rendered it inappropriate for them. When there was a discrepancy between the participants’ understanding of patient prognosis and their understanding of the clinicians’ prognosis, participants pursued a treatment plan that reflected their own prognosis. In general, participants felt PC’s involvement improved their hospital experience. The team’s communication style and holistic focus distinguished them from other hospital based services. Participants described a primarily supportive role for PC in HF care. Findings suggest that research-based collaborative models of care would improve the care of persons with HF and the people who love them. A deeper understanding of their perspectives is a step in that direction

Determining Consistency of Surrogate Decisions and End-of-Life Care Received with Patient Goals-of-Care Preferences

Background: Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences. Objective: We evaluated four additional types of consistency, using prospective data on written preferences and active clinical decision making by patients and their surrogates. Methods: Secondary analysis of data was done from a trial of an ACP intervention for patient-surrogate dyads. Forty-five patients died during the trial and comprised the sample for the analysis. Sources of data included patients' preferences in a written goals-of-care tool, medical record reviews, and two-week postbereavement interviews with surrogates to complement medical record reviews. Results: Twenty-four patients (53.3%) received care consistent with written preferences and 11 (24.4%) inconsistent with written preferences. The remaining 10 patients (22.2%) died suddenly with no opportunity for treatment decision making. Eleven (24.4%) were able to participate in decision making with their surrogates; of those, 9 (81.8%) received care consistent with their expressed preferences. Twenty-two patients were incapacitated and thus the surrogate made treatment decisions alone; of those, 18 (81.8%) made decisions consistent with the patient's written preference. Conclusions: Simply comparing documented preferences for end-of-life care and medical records of care delivered does not adequately reflect the process of ACP and treatment decision making at the end of life. To understand consistency between preferences and end-of-life care, investigators need data on written and real-time expressed preferences