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Background Studies have shown that palliative care delivered to people living with dementia (PLWD) in nursing homes (NHs) improves care quality and reduces potentially burdensome treatments. However, access to palliative care services in NHs is uncommon. Telehealth may extend the reach of specialty palliative care consultation, yet strategies for feasible and acceptable NH implementation remain unknown. During implementation of an embedded pragmatic pilot clinical trial for PLWD, we aimed to describe key informants’ perceptions of a NH telehealth palliative care intervention. Methods Guided by the Practical Implementation Sustainability Model (PRISM), we engaged key informants in 30–60-minute focus groups and individual semi-structured interviews to understand barriers and facilitators to implementation of a NH telehealth palliative care intervention in one NH. Interview prompts addressed contextual factors that influenced outcomes. Interviews were conducted and recorded via videoconference, transcribed, and analyzed using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Results Participants ( n  = 14) included NH administrators and other leaders, palliative care providers, telehealth representatives, dementia advocates, a care partner, and a PLWD. Identified barriers to implementation included stigma surrounding dementia, palliative care, and NHs; multiple logistical pieces required to implement the intervention; inflexibility of palliative care providers to meet NH needs; and inability to assess residents in person. Facilitators included convenient, user-friendly and readily available telehealth equipment, and NH staff presence during visits. Outcomes most relevant to the key informants were increased goals of care conversations, improved symptom management and quality of life, and decreased health care utilization. Suggested adaptations included increased family engagement in the logistics of the intervention and strong NH advocacy. Conclusions In this study, key informants provided feedback that barriers to implementing NH telehealth palliative care far outweighed the facilitators for uptake. Future work will focus on employing NH staff in user centered design to overcome barriers such as optimal timing for consults and/or scheduled consult days to fit NH workflow, assessing organizational readiness for implementing change, and identifying dementia-specific and palliative care education needs.

Background The purpose of this study was two-fold: (1) describe the relationship between patient or caregiver reported preparedness for care transitions, and acute care use in 30 days after discharge from a skilled nursing facility (SNF); and (2) explore how this relationship is influenced by patient, Charlson index, race and social determinants. Method The design was a secondary analysis of data collected as part of a cluster randomized trial of the Connect-Home transitional care intervention. The setting was 6 skilled nursing facilities located in the US state of North Carolina. The sample was 249 patient and caregiver dyads with acute care use data (i.e., emergency department or hospital readmission) in 30 days after transfers from SNFs to home. Preparedness for care transitions was measured with the Care Transitions Measure-15 (CTM-15), a 15 item Likert scaled measure with scores potentially ranging from 0 to 100, with higher scores indicating better preparedness. The association of preparedness and acute care use, in the overall study sample and within subgroups defined by five selected dyad background characteristics, was quantified as an incident rate ratio corresponding to the multiplicative change in the mean number of acute care use days for a 10 unit increase in CTM-15 score, using marginalized zero-inflated negative binomial regression. Results Patients had a mean age of 76.4 years, 63.8% were female, and 73.6% were White. Caregivers were female (73.6%) and adult children (42.3%). The mean CTM-15 score was 72.9 and the mean days of acute care use in 30 days after SNF discharge was 0.62. For a 10 unit increase in preparedness score, among male patients the mean number of acute care use days decreased by 33% (IRR = 0.67; 95%CI: 0.44, 0.99); White patients had a 25% reduction (IRR = 0.75; 95%CI: 0.55, 1.02), patients with low area deprivation score (lower quartile, ADI = 54) had a 31% reduction in acute care use (IRR = 0.69; 95%CI: 0.47, 1.01), and patients with a high Charlson total score (upper quartile of 9) have a 22% reduction in acute care use (IRR = 0.78; 95%CI: 0.61, 1.02). Conclusion Preparedness of care transitions is an important outcome of high-quality SNF care and is associated with reduced use of further acute care. More research is necessary to evaluate the CTM-15 as an outcome measure among sociodemographic subgroups.

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.

Introduction Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. Methods Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites’ palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. Results Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of “favorable” organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. Conclusion Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

Background Although quality-of-care domains for home-based primary and palliative programs have been proposed, they have had limited testing in practice. Our aim was to evaluate the care provision in a community-based serious-illness care program, a combined home-based primary and palliative care model. Methods Retrospective chart review of patients in an academic community-based serious-illness care program in central North Carolina from August 2014 to March 2016 ( n  = 159). Chart review included demographics, health status, and operationalized measures of seven quality-of-care domains: medical assessment, care coordination, safety, quality of life, provider competency, goal attainment, and access. Results Patients were mostly women (56%) with an average age of 70 years. Patients were multi-morbid (53% ≥3 comorbidities), functionally impaired (45% had impairment in ≥2 activities of daily living) and 32% had dementia. During the study period, 31% of patients died. Chart review found high rates assessment of functional status (97%), falls (98%), and medication safety (96%). Rates of pain assessment (70%), advance directive discussions (65%), influenza vaccination (59%), and depression assessment (54% of those with a diagnosis of depression) were lower. Cognitive barriers, spiritual needs, and behavioral issues were assessed infrequently (35, 22, 21%, respectively). Conclusion This study is one of the first to operationalize and examine quality-of-care measures for a community-based serious-illness care program, an emerging model for vulnerable adults. Our operationalization should not constitute validation of these measures and revealed areas for improvement; however, the community-based serious-illness care program performed well in several key quality-of-care domains. Future work is needed to validate these measures.

Purpose To identify specific components of ICU clinician supportive care and communication that are associated with increased post-traumatic stress disorder (PTSD) symptoms for surrogate decision makers of patients with chronic critical illness (CCI). Methods We conducted a secondary analysis of data from a randomized controlled trial of palliative care-led meetings to provide information and support for CCI surrogates. The primary outcome for this secondary analysis was PTSD symptoms at 90 days, measured by the Impact of Event Scale-Revised (IES-R). Caregiver perceptions of clinician support and communication were assessed using a version of the After-Death Bereaved Family Member Interview (ADBFMI) instrument modified for use in non-bereaved in addition to bereaved caregivers. The association between ADBFMI items and IES-R score was analyzed using multiple linear regression. Results Ninety-day follow up was complete for 306 surrogates corresponding to 224 patients. Seventy-one percent of surrogates were female, and the mean age was 51 years. Of the domains, negative perception of the patient’s physical comfort and emotional support was associated with the greatest increase in surrogate PTSD symptoms (beta coefficient 1.74, 95% CI 0.82–2.65). The three specific preselected items associated with increased surrogate PTSD symptoms were surrogate perception that clinicians did not listen to concerns (beta coefficient 10.7, 95% CI 3.6–17.9), failure of the physician to explain how the patient’s pain would be treated (beta coefficient 12.1, 95% CI 4.9–19.3), and lack of sufficient religious contact (beta coefficient 11.7, 95% CI 2–21.3). Conclusion Modifiable deficits in ICU clinician support and communication were associated with increased PTSD symptoms among CCI surrogates.

ImportancePersons living with serious illness often need skilled symptom management, communication, and spiritual support. Palliative care addresses these needs and may be delivered by either specialists or clinicians trained in other fields. It is important to understand core elements of palliative care to best provide patient-centered care.ObjectiveTo describe frequency, predictors, and timing of core elements of palliative care during the last 6 months of life.DesignRetrospective chart review.SettingInpatient academic medical center.ParticipantsDecedents with cancer, dementia, or chronic kidney disease (CKD) admitted during the 6 months preceding death.ExposuresWe identified receipt and timing of core elements of palliative care: pain and symptom management, goals of care, spiritual care; and specialty palliative care utilization; hospital encounters; demographics; and comorbid diagnoses. We ran Poisson regression models to assess whether diagnosis or hospital encounters were associated with core elements of palliative care.ResultsAmong 402 decedents, the mean (SD) number of appropriately screened and treated symptoms was 2.9 (1.7)/10. Among 76.1% with documented goals of care, 58.0% had a primary goal of comfort; 55.0% had documented spiritual care. In multivariable models, compared with decedents with cancer, those with dementia or CKD were less likely to have pain and symptom management (respectively, 31% (incidence rate ratio [IRR], 0.69; 95% CI, 0.56–0.85) and 17% (IRR, 0.83; CI, 0.71–0.97)). There was a median of 3 days (IQR, 0–173) between transition to a goal of comfort and death, and a median of 12 days (IQR, 5–47) between hospice referral and death.Conclusions and RelevanceAlthough a high proportion of patients received elements of palliative care, transitions to a goal of comfort or hospice happened very near death. Palliative care delivery can be improved by systematizing existing mechanisms, including prompts for earlier goals-of-care discussion, symptom screening, and spiritual care, and by building collaboration between primary and specialty palliative care services.

SummaryIn a national sample of Medicare nursing home residents with dementia treated with bisphosphonates, 20% had bisphosphonates deprescribed. Residents with clinical characteristics representing decreased likelihood for long-term benefit were more likely to have bisphosphonates deprescribed. Future studies are needed to evaluate outcomes of deprescribing bisphosphonates in this population.IntroductionTo determine incidence of deprescribing bisphosphonates among nursing home (NH) residents with dementia and identify factors associated with deprescribing.Methods2015–2016 Medicare claims, Part D prescriptions, Minimum Data Set (MDS) 3.0, and Nursing Home Compare for non-skilled NH residents aged 65 + with dementia and prescriptions for oral bisphosphonates overlapping the first 14 days of the stay. Our primary definition for deprescribing was a 90-day gap in medication supply; we also explored the reliability of different deprescribing definitions (30-, 90-, 180-day gaps). We estimated associations of NH, provider, and resident characteristics with deprescribing bisphosphonates using competing risks regression models.ResultsMost NH residents with dementia treated with bisphosphonates (n = 5312) were ≥ 80 years old (72%), white (81%), and female (90%); about half were dependent for transfers (50%) or mobility (45%). Using a 90-day gap in supply, the 180-day cumulative incidence of deprescribing bisphosphonates was 14.8%. This increased to 32.1% using a 30-day gap and decreased to 11.7% using a 180-day gap. Factors associated with increased likelihood for bisphosphonate deprescribing were age ≥ 90 years, newly admitted (vs. prevalent stay), dependent for mobility, swallowing difficulty, > 1 hospitalization in the prior year, CCRC facility, and nurse practitioner primary provider (vs. physician). Cancer and western geographic region were associated with reduced likelihood for deprescribing.ConclusionIn a national sample of NH residents with dementia, bisphosphonate deprescribing was uncommon, and associated with clinical characteristics signifying poor prognosis and decreased likelihood for long-term benefit. Future studies should evaluate clinical outcomes of deprescribing bisphosphonates in this population.

Background Few guidelines address fracture prevention medication use in nursing home (NH) residents with dementia. Objective We sought to identify factors that influence prescriber decision-making for deprescribing of bisphosphonates for older NH residents with dementia. Methods We conducted 12 semi-structured interviews with prescribers who care for older adults with dementia in NHs. Main Measures Interview prompts addressed experiences treating fractures, benefits, and harms of bisphosphonates, and experiences with deprescribing. Coding was guided by the social-ecological framework including patient-level (intrapersonal) and external (interpersonal, system, community, and policy) influences. Results Most prescribers were physicians (83%); 75% were female and 75% were White. Most (75%) spent less than half of their clinical effort in NHs and half were in the first decade of practice. Among patient-level influences, prescribers uniformly agreed that a prior bisphosphonate treatment course of several years, emergence of adverse effects, and changing goals of care or limited life expectancy were compelling reasons to deprescribe. External influences were frequently discussed as barriers to deprescribing. At the interpersonal level, prescribers noted that family/informal caregivers are diverse in their involvement in decision-making, and frequently concerned about the adverse effects of bisphosphonates, but perceive deprescribing as “withdrawing care.” At the health system level, prescribers felt that frequent transitions make it difficult to determine duration of prior treatment and to implement deprescribing. At the policy level, prescribers highlighted the lack of guidelines addressing residents with limited mobility and dementia or criteria for deprescribing, including uncertainty in the setting of prior fractures and lack of bone densitometry in NHs. Conclusion Systems-level barriers to evaluating bone densitometry and treatment history in NHs may impede person-centered decision-making for fracture prevention. Further research is needed to evaluate the residual benefits of bisphosphonates in medically complex residents with limited mobility and dementia to inform recommendations for deprescribing versus continued use.