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Background : Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective : We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results : We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions : Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.

Objectives: (1) Compare family decision-makers' perceptions of quality of communication with nursing home (NH) staff (nurses and social workers) and clinicians (physicians and other advanced practitioners) for persons with advanced dementia; (2) determine the extent to which characteristics of NH residents and family decision-makers are associated with those perceptions., Design: Secondary analysis of baseline data from a cluster randomized trial of the Goals of Care intervention., Setting: Twenty-two NHs in North Carolina., Participants: Family decision-makers of NH residents with advanced dementia (n = 302)., Measurements: During the baseline interviews, family decision-makers rated the quality of general communication and communication specific to end-of-life care using the Quality of Communication Questionnaire (QoC). QoC item scores ranged from 0 to 10, with higher scores indicating better quality of communication. Linear models were used to compare QoC by NH provider type, and to test for associations of QoC with resident and family characteristics., Results: Family decision-makers rated the QoC with NH staff higher than NH clinicians, including average overall QoC scores (5.5 [1.7] vs 3.7 [3.0], P < .001), general communication subscale scores (8.4 [1.7] vs 5.6 [4.3], P < .001), and end-of-life communication subscale scores (3.0 [2.3] vs 2.0 [2.5], P < .001). Low scores reflected failure to communicate about many aspects of care, particularly end-of-life care. QoC scores were higher with later-stage dementia, but were not associated with the age, gender, race, relationship to the resident, or educational attainment of family decision-makers., Conclusion: Although family decision-makers for persons with advanced dementia rated quality communication with NH staff higher than that with clinicians, they reported poor quality end-of-life communication for both staff and clinicians. Clinicians simply did not perform many communication behaviors that contribute to high-quality end-of-life communication. These omissions suggest opportunities to clarify and improve interdisciplinary roles in end-of-life communication for residents with advanced dementia., (Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Nursing homes (NH) are important settings for end-of-life care, but limited implementation may impede goals of care discussions. The purpose of this study was to understand NH staff perceptions of adoption and sustainability of the Goals of Care video decision aid for families of residents with advanced dementia. Study design was a cross-sectional survey of staff at 11 NHs in North Carolina who participated in the Goals of Care (GOC) cluster randomized clinical trial. Staff perceived the GOC decision aid intervention as a positive innovation; it was perceived as more compatible with current practices by male staff, nurses, and more experienced NH staff. Perceptions were correlated with experience, implying that experience with an innovative approach may help to promote improved GOC communication in nursing homes. Nurses and social work staff could be effective champions for implementing a communication technique, like the GOC intervention., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background/aims: Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes., Methods: The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia. In 11 intervention nursing homes, family decision-makers for residents with advanced dementia received a two-component intervention: viewing a video decision aid about goals of care choices and then participating in a structured decision-making discussion with the nursing home care plan team, ideally within 3 months after the decision aid was viewed. Following guidelines from the National Institutes of Health Behavior Change Consortium, fidelity was assessed in study design, in nursing home staff training for intervention implementation, and in monitoring and receipt of the intervention. We also monitored the content and timing of goals of care discussions., Results: Investigators enrolled 151 family decision-maker/resident dyads in intervention sites; of those, 136 (90%) received both components of the intervention, and 92%-99% of discussions addressed each of four recommended content areas-health status, goals of care, choice of a goal, and treatment planning. A total of 94 (69%) of the discussions between family decision-makers and the nursing home care team were completed within 3 months., Conclusion: The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia. Key supports for implementation included design features that aligned with nursing home practice, efficient staff training, and a structured guide for goals of care discussions between family decision-makers and staff. These approaches may be used to promote fidelity to behavioral interventions in future clinical trials., (© The Author(s) 2016.)

Purpose/objectives: To compare a structured cancer survivorship care plan (SCP) transition visit versus an SCP transition visit coupled with a coordinated follow-up visit from the primary care provider (PCP).
., Design: Pilot randomized, controlled study.
., Setting: REX Cancer Hospital, a community cancer center in Raleigh, North Carolina.
., Sample: 34 adults completing treatment with curative intent. 
., Methods: Patients and PCPs completed measures at baseline and at six weeks. Wilcoxon signed rank and rank sum tests were used for comparisons of SCP only versus SCP with PCP follow-up visit, as well as between high- and low-activated patients.
., Main Research Variables: Confidence in survivorship information and survivor concerns.
., Findings: The intervention was feasible and acceptable to patients and their PCPs. All patients (N = 34) had less contradictory information about care after SCP receipt. PCPs reported improved confidence in patients, regardless of intervention arm. Highly activated or empowered patients benefited more and had increased confidence and fewer concerns about cancer care. 
., Conclusions: The SCP interventions led to increased confidence in survivorship information, but some benefits were greater for highly activated patients. PCPs also had improved confidence in survivorship care after SCP receipt, whether or not they saw the patient in follow-up. A larger study is needed to further explore these findings and the changes over time.
., Implications for Nursing: Nurses can be instrumental in facilitating the development and delivery of SCP to survivors and PCPs.

Purpose: Describe medication safety metrics used at University HealthSystem Consortium (UHC) institutions and recommend a meaningful way to report and communicate medication safety information across an organization., Methods: A cross-sectional study was conducted using an electronically distributed, open-ended survey instrument., Results: Twenty percent of the UHC institutions responded to our survey. Seventy-seven percent of those institutions responding to our survey reported their organization has defined metrics to measure medication safety; an additional 21% of the institutions were still in the process of defining metrics. Of metrics that were reported, 33% were true medication safety metrics. Results are distributed to a wide variety of institutional venues., Conclusion: Institutions should take several actions related to medication safety including defining local metrics; building metrics addressing preventable adverse drug events, medication errors, and technology; and reporting results to a variety of venues in order to design specific interventions to improve local medication use.

Older patients and their families desire control over health decisions in serious illness. Experts recommend discussion of prognosis and goals of care prior to decisions about treatment. Having achieved longevity, older persons often prioritize other goals such as function, comfort, or family support--and skilled communication is critical to shift treatment to match these goals. Shared decision making is the ideal approach in serious illness. Older patients desire greater family involvement; higher rates of cognitive impairment mean greater dependency on surrogates to make decisions. Despite the importance of communication, fewer than half of older patients or families recall treatment discussions with clinicians, and poor quality communication adversely affects family satisfaction and patient outcomes. Direct audiorecording of clinical encounters and longitudinal studies of communication and treatment decisions have yielded important insights into the quality of clinical communication. Current clinical practice rarely meets standards for shared decision making. Innovative methods to record and use patient preferences show promise to overcome the limitations of traditional advance directives. Decision aids, intensive clinician training, and structured interpersonal communication interventions have all been shown to be effective to improve the quality of communication and decision making. Priorities for geriatric palliative care research, building on these insights, now include empirical testing of communication approaches for surrogates and for diverse populations, exploration of meaningful ways to communicate prognosis, and expansion of intervention research.

Background: Many patients with advanced cystic fibrosis (CF) lung disease receive intensive treatments such as noninvasive and invasive mechanical ventilation for respiratory failure after little or no communication with physicians., Methods: Using surveys and follow-up interviews, physicians at two major CF care centers reported their practices for discussing intensive treatment preferences with patients with CF and about barriers and facilitators to communication., Results: Surveys were completed by 30 (88%) and 26 (76%) of 34 eligible CF physicians who provide care for children (60%), adults (23%), or both (17%). Respondents described variable timing and content of discussions. They identified patient/family factors such as denial of disease severity, optimistic expectations of treatment outcomes, inability of ill patients to participate in discussions, and family disagreements about treatments as primary barriers to discussions. They also acknowledged physician factors, including concern for taking away hope and uncertainty about when to address treatment preferences. Patient/family factors were also the most common facilitators identified, particularly disease severity and inquiry about intensive treatments. They recommended: (1) developing standards for communication, (2) offering training in communication for physicians, (3) creating decision support tools for patients and families, and (4) using the multidisciplinary CF care team to facilitate communication., Conclusions: CF physicians describe numerous patient/family factors barriers to communicating about intensive treatments for respiratory failure. They recommend changing physician and organizational factors to improve practice and promote effective communication. Innovation in clinical training, team roles, and decision support may prompt changes in practice standards.

Background: Communication between families and providers in the ICU affects patient and family outcomes and use of health-care resources. Recent research studies have tested interventions designed to improve communication quality and outcomes between providers and families of patients in the ICU. We conducted a systematic review of these studies., Methods: We searched the MEDLINE, PsychInfo, Cochrane, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases from 1995 to July 2010. We included studies that reported controlled clinical interventions designed to improve communication between providers and families of patients in the ICU aged 18 years or older. We abstracted all selected studies to a standardized data collection instrument and completed a quality checklist based on recommendations from the Consolidated Standards for Reporting Trials (CONSORT) investigators., Results: In all, 2,841 articles were identified. Of those articles, 180 met the criteria for full review, and 21 articles of 16 distinct interventions met the full inclusion criteria, of which five were randomized. Interventions studied included printed information or structured family conferences, with or without additional family support. Conferences aimed to communicate the diagnosis and prognosis, elicit patient values, assess family understanding, and clarify the goals of treatment. Printed information, palliative care or ethics consultation, or regular, structured communication by the usual ICU team reduced family distress, improved comprehension, and decreased the use of intensive treatments., Conclusions: The evidence supports the use of printed information and structured communication by the usual ICU team, ethics consultation, or palliative care consultation to improve family emotional outcomes and to reduce ICU length of stay and treatment intensity. Evidence that these interventions reduce total costs is inconclusive. A comprehensive research agenda should ensure the future study of a full range of patient-centered outcomes.

Purpose: To explore and identify communication and decision making with health care providers for African Americans living with cancer and for their families., Methods: We used focus group interviews to identify and explore cultural perceptions, expectations, and desires as they relate to quality of life domains., Participants: Of the 42 African American participants, 33 were women. Half of the participants (n = 21) were caregivers of a family member with cancer; the others were cancer survivors and some of them had also cared for a loved one with cancer., Results: Participants focused on effective communication and decision making as fundamental to overall quality of life. Furthermore, physicians were viewed as having the responsibility to establish and monitor effective communication with patients and families. Within the domain of effective communication, participants stressed that health care providers needed to know the person and family and to tailor communication with them based on that knowledge. Within the domain of decision making, participants emphasized having a sense of control over treatment choices. They also expressed concerns for populations made vulnerable by advanced age, poverty, or low levels of formal education., Discussion: Our participants indicated that relationship-centered care, in which one's sense of personhood is sought, acknowledged, and worked with, is foundational for effective communication and decision making.

Background: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. Methods: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early‐stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid‐to‐late stage dementia. The 11‐member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. Results: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. Conclusions: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators. [ABSTRACT FROM AUTHOR]

The article presents a study which described the translation and cultural adaptation of a toolkit to increase its relevance to the Japanese primary care clinician. Topics discussed include categories of reasons for adaptations to the dementia-specific advance care planning training toolkit, most common challenges requiring adaptation of the original training content, and examples of adaptation process from English to Japanese.

Nursing homes (NHs) provide care to residents with serious illness and related complex health care needs. As such, discussions about end-of-life care between NH staff and residents and families are necessary to ensure residents receive care consistent with their goals. Interventions such as video decision aids have been developed to promote discussions and improve advance care planning, but few studies have examined how NH characteristics may relate to the implementation of these interventions; such information might lead toward more use of successful interventions. The purpose of this study is to understand NH characteristics that are associated with the implementation of the Goals of Care (GOC) intervention, which combined a video decision aid with a structured discussion to guide decision-making in advanced dementia. A multiple case study. Staff surveys were conducted to examine factors related to implementation effectiveness in 11 NHs in North Carolina that participated in the GOC trial. Questions measured the dependent variable of implementation effectiveness: the consistency and quality of use of the GOC intervention. NH organizational characteristics were measured using publicly available data and an administrator survey. The analysis consisted of pattern matching logic. High management support aligned with implementation effectiveness within NHs. In addition, the within case pattern analysis indicated additional characteristics related to implementation effectiveness. Facility size, Medicare beds, residents' racial composition, and star rating were related to implementation effectiveness across 6 of the 11 NHs. NH financial resources, such as size and number of Medicare beds, may be important factors for successful implementation. NHs seeking to implement advance care planning interventions should focus on within and across NH differences, such as adequate management and financial support prior to implementation to increase the likelihood of implementation effectiveness. [ABSTRACT FROM AUTHOR]

Background: Primary care clinicians care for most persons with Alzheimer's disease and related dementias (ADRDs), yet lack dementia-specific skills in advance care planning (ACP). Objectives: To develop and evaluate a training toolkit for primary care clinicians to improve ACP communication for people with ADRD and their families. Design: Clinical practice outcomes assessment and pre–post-training evaluation. Intervention training toolkit addressed ACP skills by dementia stage: (1) advance directives in early dementia, (2) decision-making capacity in moderate dementia, (3) Physician Orders for Life-Sustaining Treatment (POLST) in late-stage dementia, and (4) hospice and hospitalization in advanced dementia. Setting/Subjects: Nonhospitalized clinical care sites, 51 clinicians in North Carolina, USA. Measurements: Data collection utilized structured chart abstractions and pre- and post-training surveys. Results: Of 51 participants trained, 33 had encounters with patients with ADRD in study period. Most participants were women (n = 42), white (n = 37), and physicians (n = 31). Participants increased documentation of surrogates (22.7% vs. 35.5%, p = 0.03), decision-making capacity (13.5% vs.23.2%, p = 0.04), and POLST completion (9.2% vs. 18.8%, p = 0.03). Training increased ACP documentation (6.4% vs. 14.5%, p = 0.031) and goals of care (GOC) decision-making discussions (17.0% vs. 31.9%, p = 0.005). In pre–post-comparisons, participant confidence increased in determining capacity, exploring dementia prognosis, GOC, eliciting surrogates, and leading family meetings (all p < 0.001). Most participants strongly agreed that the training addressed skills used in practice (n = 34), contained clear language (n = 40), took an appropriate amount of time (n = 32), and was designed effectively (n = 35). Conclusion: This video-based training resource increased the use of dementia-specific ACP communication skills and clinician confidence. [ABSTRACT FROM AUTHOR]

Background: Written clinical communication regarding patients' disease understanding and values may facilitate goal-concordant care, yet little is known about the quality of electronic health record (EHR) documentation. We sought to (1) describe frequency of communication best practices in EHR-documented goals-of-care discussions, and (2) assess whether templated notes improve quality of documentation. Methods: Researchers pulled text of EHR-documented goals-of-care discussions for hospitalized patients with Stage IV cancer from admission to 60-days follow-up. Text was included when in a single encounter the clinician addressed: (a) prognosis and/or illness understanding; and (b) goals and/or treatment options. Researchers qualitatively coded text based on guidelines for communication best practices, and noted if an EHR template was used. Results: Forty-two percent (206/492) of patients had EHR-documented goals-of-care discussions. Text frequently described communication of cancer progression (89%), though rarely included prognosis (22%). Text often included patients' goals and values (83%), and at least on specific treatment decision (82%). Communication about treatments was included for 98% of patients; common examples included cancer treatment (62%), hospice (62%), resuscitation (51%), or intensive care (38%). Clinicians documented making recommendations for 40% of patients. Text addressing patient emotional and spiritual concerns was uncommon (15%). Compared to free text, use of a template was associated with increased documentation of goals and values (80% vs. 61%, p < 0.01), but not other best practices. Conclusion: Insights from the study can be used to guide future training and research to study and improve the quality of documentation about goal of care, and its impact on goal-concordant care. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Healthcare organizations are expanding community‐based serious illness care programs to deliver care for homebound patients. Programs typically focus on home‐based primary care or home‐based palliative care, yet this population may require both services. We developed and evaluated a primary and palliative care program serving seriously ill older adults, called the Reaching Out to Enhance the Health of Adults in Their Communities and Homes (REACH) program. Our objective was to determine the impact of the REACH program on healthcare utilization and the patient care experience. DESIGN: Case study using medical record review and telephone interviews. SETTING: Home‐based serious illness care program in central North Carolina. PARTICIPANTS: Patients enrolled in the REACH program from August 2014 to March 2016 (n = 159). INTERVENTION: Home‐based primary and palliative care delivered by an interdisciplinary team for seriously ill older adults. MEASUREMENTS: Structured medical record review including demographics, health and functional status, and acute hospitalization and emergency department (ED) visits in the 12 months preceding and following initiation of the REACH program. A convenience sample of participants completed telephone interviews that measured the quality‐of‐care experience and quality of communication. RESULTS: REACH patients had a 43% reduction in hospital visits and a 25% reduction in ED visits. Participants in telephone interviews reported a high‐quality care experience and very good quality of communication with REACH providers. CONCLUSION: A care model that integrates home‐based primary care and palliative care has the potential to reduce health service utilization and enhance the care experience for older patients with serious illness. J Am Geriatr Soc 67:825–830, 2019. [ABSTRACT FROM AUTHOR]

Context: Persons with late-stage dementia have limited access to palliative care.Objective: The objective of this study was to test dementia-specific specialty palliative care triggered by hospitalization.Methods: This pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. Intervention dyads received dementia-specific specialty palliative care consultation plus postacute transitional care. Control dyads received usual care and educational information. The primary outcome was 60-day hospital or emergency department visits. Secondary patient- and family-centered outcomes were patient comfort, family distress, palliative care domains addressed in the treatment plan, and access to hospice or community-based palliative care. Secondary decision-making outcomes were discussion of prognosis, goals of care, completion of Medical Orders for Scope of Treatment (MOST), and treatment decisions.Results: Of 137 eligible dyads, 62 (45%) were enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family two-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ (intervention vs. control, 0.68 vs. 0.53 transfers per 60 days, P = 0.415). Intervention patients had more palliative care domains addressed and were more likely to receive hospice (25% vs. 3%, P < 0.019). Intervention families were more likely to discuss prognosis (90% vs. 3%, P < 0.001) and goals of care (90% vs. 25%, P < 0.001) and to have a MOST at 60-day follow-up (79% vs. 30%, P < 0.001). More intervention families made decisions to avoid rehospitalization (13% vs. 0%, P = 0.033).Conclusion: Specialty palliative care consultation for hospitalized patients with late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature has contributed important insights regarding the influence of formal policies and practices on health care innovation implementation, whereas informal implementation policies and practices have garnered little attention. The broader literature suggests that informal implementation policies and practices could also influence innovation use. Purpose: We used the Organizational Theory of Innovation Implementation to further understand the role of formal and informal implementation policies and practices as determinants of implementation effectiveness. We examined their role within the context of initiatives to increase palliative care consultation in inpatient oncology. Methods: We used a case study design in two organizational settings within one academic medical center: medical and gynecologic oncology. We completed semistructured interviews with medical (n = 12) and gynecologic (n = 10) oncology clinicians using questions based on organizational theory. Quantitative data assessed implementation effectiveness, defined as aggregated palliative care consult rates within oncology services from 2010 to 2016. Four palliative care clinicians were interviewed to gain additional implementation context insights. Results: Medical oncology employed multiple formal policies and practices including training and clinician prompting to support palliative care consultation and a top-down approach, yet most clinicianswere unaware of the policies and practices, contributing to a weak implementation climate. In contrast, gynecologic oncology employed one formal policy (written guideline of criteria for initiating a consult) but also relied on informal policies and practices, such as spontaneous feedback and communication; they adopted a bottom-up approach, contributing to broader clinician awareness and strong implementation climate. Both services exhibited variable, increasing consult rates over time. Practice Implications: Informal policies and practices may compensate or substitute for formal policies and practices under certain conditions (e.g., smaller health care organizations). Further research is needed to investigate the role of formal and informal policies and practices in shaping a strong and sustainable implementation climate and subsequent effective innovation implementation. [ABSTRACT FROM AUTHOR]

Purpose of Study: Dementia affects more than 5 million Americans, and is a leading cause of death. Family members of nursing home (NH) residents with advanced dementia report difficulty making decisions about care toward the end of life. As part of a randomized trial testing an intervention to improve decision making, this qualitative study aimed to understand how family decision makers experienced goal-based decision making in advance of the death of their relative. Design and Methods: This qualitative study was conducted as part of the goals of care clinical trial. Study participants ( n = 16) were family decision makers in North Carolina whose relative with advanced dementia died after participating in the goals of care intervention. Semi-structured interviews were analyzed using a qualitative description approach. Results: Family members' experience of decision making and death differed based on the presence or absence of trusting relationships with NH staff. Family members who reported trust described a positive end-of-life experience and less need for prescribed goals of care discussions. In the absence of trust, family members reported that goals of care discussions were ignored by staff or created confusion. Implications: Among family members of persons who recently died from dementia in NHs, expressions of trust in staff were strongly related to perceptions of decision making about goals of care. Although goals of care discussions may potentially promote communication to earn trust, the presence of pre-existing trust ultimately influenced the decision making and end-of-life experiences of residents and families. [ABSTRACT FROM AUTHOR]

Background: Hospice and palliative care (PC) remain underutilized by Medicaid patients. Objective: Our aim was to evaluate an intervention to improve communication about advance care planning (ACP) and symptom distress, and to facilitate referral to PC and hospice. Methods: We conducted a study in a statewide Medicaid primary care network with 510 Medicaid care managers (CMs). PC experts collaborated with leaders in the statewide primary care network on a quality improvement intervention. Training components included education and engagement with local hospice and PC providers. Quality improvement components included feedback of quality measures and a practice toolkit. Evaluation used participant surveys and tracking of key quality measures: 1) percent of at-risk subset of aged, blind, and disabled (ABD) Medicaid patients asked about ACP or symptom distress; 2) cumulative number of ABD Medicaid PC or hospice referrals; and 3) the percent of all nondual ABD Medicaid decedents enrolled in hospice. Results: After training, CMs identified the following areas for expected practice change: ACP (29%), identifying/referring patients for hospice or PC (25%), supporting patients and families (21%), toolkit utilization (10%), and engaging medical providers (10%). Over one-year follow-up the percent of moderate and high-risk ABD Medicaid patients asked about ACP or symptoms increased from 7% to 31% and 8% to 41%, respectively ( p<0.001). The cumulative number of PC or hospice referrals increased from 8 to 155. Hospice enrollment at death was unchanged (29% to 30%, p=NS [nonsignificant]). Conclusions: A statewide intervention targeting CMs in a Medicaid primary care practice network is effective to increase communication and hospice and PC referrals; longer follow-up may be required to determine effect on hospice use. [ABSTRACT FROM AUTHOR]

Objectives To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia. Design Cluster randomized controlled trial. Setting Twenty-four nursing homes in North Carolina. Participants Residents with advanced dementia and feeding problems and their surrogates. Intervention Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care. Measurements Primary outcome was the Decisional Conflict Scale (range: 1-5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use. Results Two hundred fifty-six residents and surrogate decision-makers were recruited. Residents' average age was 85; 67% were Caucasian, and 79% were women. Surrogates' average age was 59; 67% were Caucasian, and 70% were residents' children. The intervention improved knowledge scores (16.8 vs 15.1, P < .001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs 1.90, P < .001) and more often discussed feeding options with a healthcare provider (46% vs 33%, P = .04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, P = .04) and showed a trend toward greater staff eating assistance (20% vs 10%, P = .08). Tube feeding was rare in both groups even after 9 months (1 intervention vs 3 control, P = .34). Conclusion A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers. [ABSTRACT FROM AUTHOR]

The article discusses a systematic review of studies of family-provider communication interventions that aim to improve communication quality and outcomes for patients in the intensive care unit (ICU). Data were obtained from PsychInfo and Cochrane, among others, from 1995 to 2010. Results show that patient length of stay (LOS) decreases due to the palliative care consultation. The interventions have no effect on mortality of patients.

This paper will seek to provide a background on the scholarly communication crisis to help frame a later focus on one category of open access,commonly referred to as "green" open access or "self-archiving",and more specifically,on institutional repositories. Institutional repositories (IRs) are an important development within the open access movement;however, challenges remain in realizing their full potential in the overall chain of scholarly communications. [ABSTRACT FROM AUTHOR]

The article offers information on the research articles presented in the "Journal of Palliative Medicine" for understanding the practice of palliative medicine. Topics include exposing of exposes causal mechanisms of pain, nausea, and other types of suffering through research; meaningful suggestions for effective collaboration such as role clarification and focused consultation requests offered by oncologists; and increasing awareness of caregivers at risk for emotional distress.

Context: Patients triggering rapid response team (RRT) intervention are at high risk for adverse outcomes. Data on symptom burden of these patients do not currently exist, and current symptom management and communication practices of RRT clinicians are unknown.Objectives: We sought to identify the symptom experience of RRT patients and observe how RRT clinicians communicate with patients and their families.Methods: We conducted a prospective observational study from August to December 2015. Investigators attending RRT events measured frequencies of symptom assessment, communication, and supportive behaviors by RRT clinicians. As the rapid response event concluded, investigators measured patient-reported pain, dyspnea, and anxiety using a numeric rating scale of 0 (none) to 10 (most severe), with uncontrolled symptoms defined as numeric rating scale score of ≥4.Results: We observed a total of 52 RRT events. RRT clinicians assessed for pain during the event in 62% of alert patients, dyspnea in 38%, and anxiety in 21%. Goals of care were discussed during 3% of events and within 24 hours in 13%. For the primary outcome measure, at the RRT event conclusion, 44% of alert patients had uncontrolled pain, 39% had uncontrolled dyspnea, and 35% had uncontrolled anxiety.Conclusion: Hospitalized patients triggering RRT events have a high degree of uncontrolled symptoms that are infrequently assessed and treated. Although these patients experience an acute change in medical status and are at high risk for adverse outcomes, goals-of-care discussions with RRT patients or families are rarely documented in the period after the events. [ABSTRACT FROM AUTHOR]

Context: Delivering goal-directed care is a hallmark of high-quality palliative care, but requires an understanding of preferences.Objectives: To describe and identify factors associated with level of care preferences among proxies of nursing home (NH) residents with advanced dementia.Methods: NH residents with advanced dementia and their proxies (N = 402 dyads) were recruited from 62 Boston-area facilities as part of an ongoing randomized clinical trial. At baseline, all proxies were asked to select which level of care they felt the resident should receive: intensive, basic, or comfort care. Multivariable logistic regression identified resident and proxy factors associated with a preference for comfort care (vs. basic or intensive medical care).Results: Proxy level of care preferences were: comfort, 62.2%; basic, 31.1%; and intensive medical care, 6.5%. In multivariable analyses, proxy perception that the resident had less than six months to live was most strongly associated with a preference for comfort-focused care (adjusted odds ratio 12.25, 95% CI 4.04-37.08). Additional factors significantly associated with a preference for comfort care included older resident age, worse resident cognitive impairment, and the proxy having been asked about goals of care preferences by a NH health care provider (adjusted odds ratio 1.71, 95% CI 1.07, 2.74).Conclusion: Most proxies select comfort as the preferred level of care for NH residents with advanced dementia. Discussions regarding prognosis, as well as inquiry about goals of care, are modifiable factors that may promote a preference for comfort care in this population. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Design: Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Setting: Two NHs in North Carolina. Participants: Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. Intervention: (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Measurements: Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Results: Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). Conclusions: The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention. [Copyright &y& Elsevier]

The article discusses the development and verification of a printed information brochure for families of chronically critically ill patients through cognitive testing via interviews. A printed information brochure that may enhance family understanding of chronic critical illnesses and its outcomes was developed and validated. The described structed process can function as a template for developing other information aids for use with seriously ill populations.

Abstract: Context: Intensive treatments intended to sustain life are often used for patients with advanced cystic fibrosis (CF). There are no guidelines for selecting patients whose survival and quality of life may be enhanced by such treatments or for communication with patients and caregivers about possible treatment outcomes. Objectives: We aimed to describe caregivers’ perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease. Methods: We conducted semi-structured interviews with 36 caregivers of 36 patients who died of CF about treatment preference discussions and solicited recommendations for improving discussions. Results: Twenty (56%) patients received intensive treatments during the last week of life. Twenty-two (61%) caregivers reported ever having discussed intensive treatment preferences with a physician, and 17 (77%) of these discussions were initiated during an acute illness. Only 14 (39%) of all patients participated. Caregivers expressed less certainty about consistency of treatments with patient preferences when patients did not participate. Twenty-nine (81%) caregivers endorsed first discussing treatment preferences during a period of medical stability. Conclusions: Discussions about preferences for the use of intensive treatments for patients with CF often take place during episodes of acute illness and may be delayed until patients themselves are too ill to participate. Bereaved caregivers suggest first addressing intensive treatment preferences during a stable period so that patient preferences are understood and unwanted treatments are minimized. [ABSTRACT FROM AUTHOR]