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OBJECTIVES: To elicit perspectives from specialist palliative care (SPC) and cardiology clinicians on the necessary components, delivery characteristics, and implementation strategies of successful ambulatory SPC for people with heart failure (HF). BACKGROUND: Palliative care is a recommended component of guideline-directed care for people with HF. However, optimal strategies to implement SPC within ambulatory settings are unknown. METHODS: We conducted a qualitative descriptive study comprised of semi-structured interviews with SPC and cardiology clinicians at Veterans Affairs Medical Centers (VAMCs) with the highest number of ambulatory SPC consultations within the VA system among people with HF from 2021-2022. Clinicians were asked how they provided ambulatory SPC and what they felt were the necessary components, delivery characteristics, and implementation strategies of care delivery. Interviews were analyzed using directed content analysis. RESULTS: We interviewed 14 SPC clinicians and 9 cardiology clinicians at seven national VAMCs; 43% were physicians and 48% were advanced practice registered nurses/physician associates. Essential components of ambulatory SPC encompassed discussion of goals of care (e.g., prognosis, advance directives) and connecting patients/caregivers to resources (e.g., homecare). Preferred delivery characteristics included integrated (i.e., embedded) approaches to SPC delivery, standardized patient selection and referral procedures, and formalized procedures for handoffs to and from SPC. Strategies that addressed SPC implementation included deploying palliative champions, educating non-SPC clinicians on the value of ambulatory SPC for people with HF, and developing ambulatory models through leadership support. CONCLUSIONS/IMPLICATIONS: Facilitating the broader adoption of ambulatory SPC among people with HF may be achieved by prioritizing these mutually valued and necessary features of SPC delivery.
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BACKGROUND: To evaluate the effectiveness of delivering feedback reports to increase completion of LST notes among VA Home Based Primary Care (HBPC) teams. The Life Sustaining Treatment Decisions Initiative (LSTDI) was implemented throughout the Veterans Health Administration (VHA) in the United States in 2017 to ensure that seriously ill Veterans have care goals and LST decisions elicited and documented. METHODS: We distributed monthly feedback reports summarizing LST template completion rates to 13 HBPC intervention sites between October 2018 and February 2020 as the sole implementation strategy. We used principal component analyses to match intervention to 26 comparison sites and used interrupted time series/segmented regression analyses to evaluate the differences in LST template completion rates between intervention and comparison sites. Data were extracted from national databases for VA HBPC in addition to interviews and surveys in a mixed methods process evaluation. RESULTS: LST template completion rose from 6.3 to 41.9% across both intervention and comparison HBPC teams between March 1, 2018, and February 26, 2020. There were no statistically significant differences for intervention sites that received feedback reports. CONCLUSIONS: Feedback reports did not increase documentation of LST preferences for Veterans at intervention compared with comparison sites. Observed increases in completion rates across intervention and comparison sites can likely be attributed to implementation strategies used nationally as part of the national roll-out of the LSTDI. Our results suggest that feedback reports alone were not an effective implementation strategy to augment national implementation strategies in HBPC teams.
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Serviços de Assistência Domiciliar , Atenção Primária à Saúde , United States Department of Veterans Affairs , Veteranos , Humanos , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/normas , Estados Unidos , Veteranos/psicologia , Serviços de Assistência Domiciliar/normas , Masculino , Feminino , Idoso , Retroalimentação , Documentação/métodos , Documentação/normas , Preferência do PacienteRESUMO
Importance: Increasing inpatient palliative care delivery is prioritized, but large-scale, experimental evidence of its effectiveness is lacking. Objective: To determine whether ordering palliative care consultation by default for seriously ill hospitalized patients without requiring greater palliative care staffing increased consultations and improved outcomes. Design, Setting, and Participants: A pragmatic, stepped-wedge, cluster randomized trial was conducted among patients 65 years or older with advanced chronic obstructive pulmonary disease, dementia, or kidney failure admitted from March 21, 2016, through November 14, 2018, to 11 US hospitals. Outcome data collection ended on January 31, 2019. Intervention: Ordering palliative care consultation by default for eligible patients, while allowing clinicians to opt-out, was compared with usual care, in which clinicians could choose to order palliative care. Main Outcomes and Measures: The primary outcome was hospital length of stay, with deaths coded as the longest length of stay, and secondary end points included palliative care consult rate, discharge to hospice, do-not-resuscitate orders, and in-hospital mortality. Results: Of 34â¯239 patients enrolled, 24â¯065 had lengths of stay of at least 72 hours and were included in the primary analytic sample (10â¯313 in the default order group and 13â¯752 in the usual care group; 13â¯338 [55.4%] women; mean age, 77.9 years). A higher percentage of patients in the default order group received palliative care consultation than in the standard care group (43.9% vs 16.6%; adjusted odds ratio [aOR], 5.17 [95% CI, 4.59-5.81]) and received consultation earlier (mean [SD] of 3.4 [2.6] days after admission vs 4.6 [4.8] days; P < .001). Length of stay did not differ between the default order and usual care groups (percent difference in median length of stay, -0.53% [95% CI, -3.51% to 2.53%]). Patients in the default order group had higher rates of do-not-resuscitate orders at discharge (aOR, 1.40 [95% CI, 1.21-1.63]) and discharge to hospice (aOR, 1.30 [95% CI, 1.07-1.57]) than the usual care group, and similar in-hospital mortality (4.7% vs 4.2%; aOR, 0.86 [95% CI, 0.68-1.08]). Conclusions and Relevance: Default palliative care consult orders did not reduce length of stay for older, hospitalized patients with advanced chronic illnesses, but did improve the rate and timing of consultation and some end-of-life care processes. Trial Registration: ClinicalTrials.gov Identifier: NCT02505035.
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Estado Terminal , Cuidados Paliativos , Encaminhamento e Consulta , Idoso , Feminino , Humanos , Masculino , Hospitais para Doentes Terminais , Mortalidade Hospitalar , Estado Terminal/terapia , Hospitalização , Doença Pulmonar Obstrutiva Crônica/terapia , Demência/terapia , Insuficiência Renal/terapiaRESUMO
BACKGROUND: Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes. METHODS/DESIGN: The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer's Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki. DISCUSSION: This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants. TRIAL REGISTRATION: The project is registered on ClinicalTrials.gov: NCT04520698.
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Doença de Alzheimer , Demência , Humanos , Doença de Alzheimer/terapia , Casas de Saúde , Cuidados Paliativos/métodos , Qualidade de VidaRESUMO
For a number of decades, nurses have raised concerns about nursing-related issues in nursing homes (NH) such as inadequate registered nurse (RN) staffing, insufficient RN and advanced practice registered nurse (APRN) gerontological expertise, and lack of RN leadership competencies. The NASEM Committee on the Quality of Care in Nursing Homes illuminated the long-standing issues and concerns affecting the quality of care in nursing homes and proposed seven goals and associated recommendations intended to achieve the Committee's vision: Nursing home residents receive care in a safe environment that honors their values and preferences, addresses goals of care, promotes equity, and assesses the benefits and risks of care and treatments. This paper outlines concrete and specific actions nurses and nursing organizations can take to ensure the recommendations are implemented.
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Geriatria , Enfermeiras e Enfermeiros , Humanos , Casas de Saúde , Recursos Humanos , Qualidade da Assistência à SaúdeRESUMO
While advance care planning (ACP) can help elicit preferences and is associated with improved end-of-life outcomes, persons living with dementia (PLWD) in nursing homes are rarely included in ACP. Web-based decision aids are a readily available tool to engage PLWD in ACP, but none are designed for the unique needs of PLWD, particularly those residing in nursing homes. Our Memory Care Wishes (OMCW) was adapted from a publicly available web-based ACP tool in collaboration with dementia care experts. This study aimed to explore the acceptability of OMCW. We used a convergent, mixed methods design to describe PLWD and surrogates' experiences using the OMCW website. Participants described ease of use, comfort with viewing, helpfulness for planning, and likelihood to recommend. Overall, OMCW is acceptable, however, PLWD continue to have difficulties understanding and engaging with some website content. Modifications were incorporated based on these findings, setting the stage for implementation and effectiveness testing.
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Planejamento Antecipado de Cuidados , Demência , Demência/terapia , Estudos de Viabilidade , Humanos , Internet , Casas de SaúdeRESUMO
Rationale: Admissions to ICUs are common during terminal hospitalizations, but little is known about how ICU care affects the end-of-life experience for patients dying in hospitals and their families.Objectives: We measured the association between ICU care during terminal hospitalization and family ratings of end-of-life care for patients who died in 106 Veterans Affairs hospitals from 2010 to 2016.Methods: Patients were divided into four categories: no-ICU care, ICU-only care, mixed care (died outside ICU), and mixed care (died in ICU). Multivariable linear probability models were adjusted for patient and hospital characteristics. Patients receiving mixed care were also analyzed based on percentage of time in ICU.Measurements and Main Results: Of 57,550 decedents, 28,062 (48.8%) had a survey completed by a family member or close contact. In adjusted models, ICU-only care was associated with more frequent optimal ratings than no-ICU care, including overall excellent care (56.6% vs. 48.1%; P < 0.001), care consistent with preferences (78.7% vs. 72.4%; P < 0.001), and having pain controlled (51.3% vs. 46.7%; P < 0.001). Among patients with mixed care, increasing ICU time was associated with higher ratings on these same measures (all P < 0.001 for comparisons of those spending >75% time in ICU vs. ≤25% time).Conclusions: Among hospital decedents, ICU care was associated with higher family ratings of quality of end-of-life care than ward care. Reducing ICU use among hospital decedents may not improve end-of-life quality, and efforts to understand how ICU care improves end-of-life quality could help provide better care outside ICUs.
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Mortalidade Hospitalar , Hospitalização , Unidades de Terapia Intensiva , Qualidade da Assistência à Saúde , Assistência Terminal/normas , Idoso , Idoso de 80 Anos ou mais , Feminino , Unidades Hospitalares , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. METHODS: We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). RESULTS: Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home." CONCLUSIONS: The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.
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Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Assistência Terminal , Criança , Humanos , Cuidados Paliativos , Pais , Qualidade de VidaRESUMO
BACKGROUND: On July 1, 2018, the Veterans Health Administration (VA) National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative (LSTDI). Its goal is to identify, document, and honor LST decisions of seriously ill veterans. Providers document veterans' goals and decisions using a standardized LST template and order set. OBJECTIVE: Evaluate the first 7 months of LSTDI implementation and identify predictors of LST template completion. DESIGN: Retrospective observational study of clinical and administrative data. We identified all completed LST templates, defined as completion of four required template fields. Templates also include four non-required fields. Results were stratified by risk of hospitalization or death as estimated by the Care Assessment Need (CAN) score. SUBJECTS: All veterans with VA utilization between July 1, 2018, and January 31, 2019. MAIN MEASURES: Completed LST templates, goals and LST preferences, and predictors of documentation. RESULTS: LST templates were documented for 108,145 veterans, and 85% had one or more of the non-required fields completed in addition to the required fields. Approximately half documented a preference for cardiopulmonary resuscitation. Among those who documented specific goals, half wanted to improve or maintain function, independence, and quality of life while 28% had a goal of life prolongation irrespective of risk of hospitalization/death and 45% expressed a goal of comfort. Only 7% expressed a goal of being cured. Predictors of documentation included VA nursing home residence, older age, frailty, and comorbidity, while non-Caucasian race, rural residence, and receipt of care in a lower complexity medical center were predictive of no documentation. CONCLUSIONS: LST decisions were documented for veterans at high risk of hospitalization or death. While few expressed a preference for cure, half desire, cardiopulmonary resuscitation. Predictors of documentation were generally consistent with existing literature. Opportunities to reduce observed disparities exist by leveraging available VA resources and programs.
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Assistência Terminal , Veteranos , Idoso , Documentação , Humanos , Qualidade de Vida , Estudos Retrospectivos , Estados Unidos , United States Department of Veterans AffairsRESUMO
BACKGROUND: Little is known about the palliative care needs of patients awaiting lung transplantation. The aim of this study was to describe these needs in patients undergoing evaluation for or awaiting lung transplantation. METHODS: Cross-sectional survey using an adapted version of the Needs at the End-of-life Screening Tool (NEST-13) at a US-based transplant program. RESULTS: Among the 111 participants, 83.5% were White, 60.0% were female, and almost three-quarters had either restrictive or obstructive lung disease. The greatest palliative care needs included difficulty being physically active (mean: 7.9/10; SD: 2.6; median: 9.0), physical symptoms (mean: 7.4/10; SD: 2.6; median: 8.0), missing work due to illness (mean: 6.2/10; SD: 4.0; median: 8.0), and concerns that life might end (mean: 5.1/10; SD: 3.6; median: 5.0). Participants reported that religious/spiritual beliefs contribute to their sense of purpose (mean: 4.1/10; SD: 3.9) but had few unmet needs in this area (mean: 0.9/10; median: 0.0). Only 6.4% reported seeing a palliative care specialist, and 48.2% were unsure what a palliative care specialist is. CONCLUSION: There are substantial palliative care needs among lung transplant candidates, particularly physical symptoms and end-of-life concerns. These findings support integrating palliative care and end-of-life discussions in the management of lung transplant candidates.
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Transplante de Pulmão , Cuidados Paliativos , Estudos Transversais , Feminino , Humanos , Masculino , ReligiãoRESUMO
PURPOSE: Veterans with advanced cancer can receive hospice care concurrently with treatments such as radiation and chemotherapy. However, variations exist in concurrent care use across Veterans Affairs (VA) medical centers (VAMCs), and overall, concurrent care use is relatively rare. In this qualitative study, we aimed to identify, describe, and explain factors that influence the provision of concurrent cancer care (defined as chemotherapy or radiation treatments provided with hospice) for veterans with terminal cancer. METHODS: From August 2015 to April 2016, we conducted six site visits and interviewed 76 clinicians and staff at six VA sites and their contracted community hospices, including community hospices (n = 16); VA oncology (n = 25); VA palliative care (n = 17); and VA inpatient hospice and palliative care units (n = 18). RESULTS: Thematic qualitative content analysis found three themes that influenced the provision of concurrent care: (1) clinicians and staff at community hospices and at VAs viewed concurrent care as a viable care option, as it preserved hope and relationships while patient goals are clarified during transitions to hospice; and (2) the presence of dedicated liaisons facilitated care coordination and education about concurrent care; however, (3) clinicians and staff concerns about Medicare guideline compliance hindered use of concurrent care. CONCLUSIONS: While concurrent care is used by a small number of veterans with advanced cancer, VA staff valued having the option available and as a bridge to hospice. Hospice staff felt concurrent care improved care coordination with VAMCs, but use may be tempered due to concerns related to Medicare compliance.
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Procedimentos Clínicos/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias/terapia , Cuidados Paliativos/organização & administração , United States Department of Veterans Affairs/organização & administração , Veteranos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Hospitais para Doentes Terminais , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/patologia , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Estudos Retrospectivos , Estados Unidos/epidemiologia , Veteranos/estatística & dados numéricosRESUMO
OBJECTIVE: The goal of this study was to conduct initial psychometric analyses of a seven-item pain intensity measure for persons with dementia (PIMD) that was developed using items from existing pain observational measures. DESIGN AND METHODS: We evaluated validity by examining associations with an expert clinician's pain intensity rating (ECPIR) and an established pain observation tool (Mobilization Observation Behaviour Intensity Dementia [MOBID]). We also examined correlations between the PIMD and known correlates of pain: depression, sleep disturbances, agitation, painful diagnoses, and caregiver pain reports. We examined the differences between PIMD scores for "at rest" and "during movement" observations. We assessed reliability by calculating Cronbach's alpha and estimating inter-rater reliability using intraclass correlations (ICCs). Finally, we examined whether six additional "recent changes in behavior" items improved the PIMD's ability to predict expert clinicians' pain ratings. SETTING: Sixteen nursing homes located in Alabama, Georgia, Pennsylvania, and New Jersey. PARTICIPANTS: One hundred ninety residents with moderate to severe cognitive impairment, mean age of 84 years, 49.5% female, and 70% white. RESULTS: PIMD during movement scores were highly correlated with the ECPIR and overall MOBID scores. As expected, there were large differences between at rest and during movement PIMD scores. Associations of PIMD with known correlates of pain were generally low and statistically nonsignificant. Internal consistency was supported with a Cronbach alpha of 0.72 and an inter-rater ICC of 0.82 for during movement PIMD scores. CONCLUSIONS: Initial evaluation of the PIMD supports its validity and reliability. Additional testing is needed to evaluate the tool's sensitivity to changes in pain intensity.
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Demência/diagnóstico , Demência/psicologia , Medição da Dor/normas , Dor/diagnóstico , Dor/psicologia , Psicometria/normas , Idoso , Idoso de 80 Anos ou mais , Demência/epidemiologia , Feminino , Humanos , Masculino , Casas de Saúde/normas , Dor/epidemiologia , Medição da Dor/métodos , Psicometria/métodos , Serviços de Saúde para Veteranos Militares/normasRESUMO
OBJECTIVE: The goal of this study was to identify a limited set of pain indicators that were most predicive of physical pain. We began with 140 items culled from existing pain observation tools and used a modified Delphi approach followed by statistical analyses to reduce the item pool. METHODS: Through the Delphi Method, we created a candidate item set of behavioral indicators. Next, trained staff observed nursing home residents and rated the items on scales of behavior intensity and frequency. We evaluated associations among the items and expert clinicians' assessment of pain intensity. SETTING: Four government-owned nursing homes and 12 community nursing homes in Alabama and Southeastern Pennsylvania. PARTICIPANTS: Ninety-five residents (mean age = 84.9 years) with moderate to severe cognitive impairment. RESULTS: Using the least absolute shrinkage and selection operator model, we identified seven items that best predicted clinicians' evaluations of pain intensity. These items were rigid/stiff body or body parts, bracing, complaining, expressive eyes, grimacing, frowning, and sighing. We also found that a model based on ratings of frequency of behaviors did not have better predictive ability than a model based on ratings of intensity of behaviors. CONCLUSIONS: We used two complementary approaches-expert opinion and statistical analysis-to reduce a large pool of behavioral indicators to a parsimonious set of items to predict pain intensity in persons with dementia. Future studies are needed to examine the psychometric properties of this scale, which is called the Pain Intensity Measure for Persons with Dementia.
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Técnica Delphi , Demência/diagnóstico , Demência/psicologia , Medição da Dor/métodos , Dor/diagnóstico , Dor/psicologia , Idoso , Idoso de 80 Anos ou mais , Demência/epidemiologia , Feminino , Humanos , Masculino , Dor/epidemiologia , Medição da Dor/tendênciasRESUMO
ABSTRACTBackground:Nursing home (NH) residents with dementia commonly exhibit persistent vocalizations (PVs), otherwise known in the literature as disruptive or problematic vocalizations. Having a better understanding of PVs and the research completed to date on this phenomenon is important to guide further research and clinical practice in NHs. This integrative review examines the current literature on the phenomenon of PVs among NH residents with dementia. METHODS: We conducted a search in the PubMed, Scopus, Ovid Medline, and CINAHL databases for articles published in English. Articles were included if the focus was specifically on research involving vocal behaviors of older adults with dementia residing in NHs. RESULTS: Our literature search revealed eight research articles that met the inclusion criteria. These studies were published in 2011 or earlier and involved small sample sizes. Seven of these studies were descriptive and the eighth was a non-pharmacological intervention study for PVs exhibited by NH residents with dementia. These studies were vastly different in their labeling, definitions, and categorization of the PVs as well as methods of measuring PVs. CONCLUSION: The heterogeneity of the evidence limits the ability to make recommendations for practice. Given the paucity of research on this phenomenon; recommendations for additional research are given.
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Agressão/psicologia , Demência/psicologia , Agitação Psicomotora/psicologia , Comportamento Verbal , Idoso , Demência/complicações , Instituição de Longa Permanência para Idosos , Humanos , Idioma , Casas de Saúde , Agitação Psicomotora/complicações , Agitação Psicomotora/diagnósticoRESUMO
OBJECTIVES: This qualitative descriptive study explored provider-surrogate communication during Physician Orders for Life-Sustaining Treatment (POLST) discussions for patients with advanced dementia. METHODS: Data from participant observations and audio-recordings of ten POLST discussions were analyzed using directed content analysis within the context of an existing conceptual model of Communication and Surrogate Decision Making. RESULTS: Surrogates primarily focused on making sense of the clinical information about life-sustaining treatments during POLST conversations. Providers delivered clinical information about the trajectory of dementia, life-sustaining treatments, and/or features of POLST. They also demonstrated emotional support, by valuing what the surrogate said, acknowledging the surrogate's emotions, listening carefully, understanding the patient as a person, and eliciting questions. However, providers rarely conveyed comprehensive information about the patient's current condition and end-of-life treatment options. Also, open communication of expectations and preferred decision-making roles was rarely observed during the discussions. CONCLUSION: Findings highlight areas that require providers' attention to conduct effective communication, such as delivering comprehensive information about life-sustaining treatments including discussion of risks and benefits in the context of dementia. Findings also support the use of the conceptual model as a framework to examine provider-surrogate communication in the context of POLST discussions, advanced dementia, and non-hospital settings. Additional research is necessary to confirm these findings in larger, more diverse groups of patients, surrogates, and providers.
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Planejamento Antecipado de Cuidados , Cuidadores/psicologia , Compreensão , Demência/psicologia , Relações Profissional-Paciente , Assistência Terminal/psicologia , Idoso , Comunicação , Tomada de Decisões , Feminino , Humanos , Sistemas de Manutenção da Vida , Masculino , Pessoa de Meia-Idade , Casas de Saúde , Preferência do Paciente , PennsylvaniaRESUMO
PURPOSE: The Mobilization-Observation-Behavior-Intensity-Dementia (MOBID) Pain Scale is an observational tool in which raters estimate pain intensity on a 0-10 scale following five standardized movements. The tool has been shown to be valid and reliable in northern European samples and could be useful in the United States (US) for research and clinical purposes. The goal of this study was to examine the validity and reliability of the MOBID among English-speaking nursing home residents in the US. DESIGN: Cross-sectional study. SETTINGS: Sixteen nursing homes in Pennsylvania, New Jersey, Georgia and Alabama. PARTICIPANTS: One hundred thirty-eight older adults with dementia and moderate to severe cognitive impairment. METHODS: Validity was evaluated using Spearman correlations between the MOBID overall pain intensity score and 1) an expert clinician's pain intensity rating (ECPIR), 2) nursing staff surrogate pain intensity ratings, and 3) known correlates of pain. We assessed internal consistency by Cronbach's alpha. RESULTS: MOBID overall scores were significantly associated with expert clinician's rating of current and worst pain in the past week (rho = 0.54, and 0.57; p < .001, respectively). Statistically significant associations also were found between the MOBID overall score and nursing staff current and worst pain intensity ratings as well as the Cornell Scale for Depression in Dementia (rho = 0.29; p < .001). Internal consistency was acceptable (α = 0.83). CONCLUSIONS AND CLINICAL IMPLICATIONS: Result of this study support the use of the MOBID in English-speaking staff and residents in the US. Findings also suggest that the tool can be completed by trained, nonclinical staff.
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Demência/psicologia , Medição da Dor/normas , Psicometria/normas , Idoso , Idoso de 80 Anos ou mais , Alabama , Feminino , Georgia , Humanos , Masculino , Pessoa de Meia-Idade , New Jersey , Casas de Saúde/organização & administração , Casas de Saúde/estatística & dados numéricos , Medição da Dor/instrumentação , Medição da Dor/estatística & dados numéricos , Pennsylvania , Psicometria/instrumentação , Psicometria/métodos , Reprodutibilidade dos Testes , Estados UnidosRESUMO
The goal of this quality improvement project is to improve care planning around preferences for life-sustaining treatments (LST) and daily care to promote quality of life, autonomy, and safety for U.S. Department of Veterans Affairs (VA) Community Living Center (CLC) (i.e., nursing home) residents with dementia. The care planning process occurs through partnerships between staff and family surrogate decision makers. This process is separate from but supports implementation of the LST Decision Initiative-developed by the VA National Center for Ethics in Health Care-which seeks to increase the number, quality, and documentation of goals of care conversations (GOCC) with Veterans who have life-limiting illnesses. The current authors will engage four to six VA CLCs in the Mid-Atlantic states, provide teams with audit and feedback reports, and establish learning collaboratives to address implementation concerns and support action planning. The expected outcomes are an increase in CLC residents with dementia who have documented GOCC and LST plans. [Journal of Gerontological Nursing, 45(3), 21-30.].
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Demência/enfermagem , Enfermagem Geriátrica/normas , Casas de Saúde/normas , Guias de Prática Clínica como Assunto , Melhoria de Qualidade/normas , United States Department of Veterans Affairs/normas , Veteranos/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados UnidosRESUMO
BACKGROUND: To the authors' knowledge, little is known regarding the relationship between patients' and families' satisfaction with aggressive end-of-life care. Herein, the authors examined the associations between episodes of aggressive care (ie, chemotherapy, mechanical ventilation, acute hospitalizations, and intensive care unit admissions) within the last 30 days of life and families' evaluations of end-of-life care among patients with non-small cell lung cancer (NSCLC). METHODS: A total of 847 patients with NSCLC (34% of whom were aged <65 years) who died in a nursing home or intensive care, acute care, or hospice/palliative care (HPC) unit at 1 of 128 Veterans Affairs Medical Centers between 2010 and 2012 were examined. Data sources included Veterans Affairs administrative and clinical data, Medicare claims, and the Bereaved Family Survey. The response rate for the Bereaved Family Survey was 62%. RESULTS: Greater than 72% of veterans with advanced lung cancer who died in an inpatient setting had at least 1 episode of aggressive care and 31% received chemotherapy within the last 30 days of life. For all units except for HPC, when patients experienced at least 1 episode of aggressive care, bereaved families rated care lower compared with when patients did not receive any aggressive care. For patients dying in an HPC unit, the associations between overall ratings of care and ≥2 inpatient admissions or any episode of aggressive care were not found to be statistically significant. Rates of aggressive care were not associated with age, and family ratings of care were similar for younger and older patients. CONCLUSIONS: Aggressive care within the last month of life is common among patients with NSCLC and is associated with lower family evaluations of end-of-life care. Specialized care provided within an HPC unit may mitigate the negative effects of aggressive care on these outcomes. Cancer 2017;123:3186-94. © 2017 American Cancer Society.
Assuntos
Antineoplásicos/uso terapêutico , Luto , Carcinoma Pulmonar de Células não Pequenas/terapia , Família , Neoplasias Pulmonares/terapia , Respiração Artificial , Assistência Terminal/métodos , United States Department of Veterans Affairs , Idoso , Idoso de 80 Anos ou mais , Comportamento do Consumidor , Feminino , Hospitais para Doentes Terminais , Hospitalização , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , Casas de Saúde , Cuidados Paliativos , Qualidade da Assistência à Saúde , Estudos Retrospectivos , Inquéritos e Questionários , Estados Unidos , VeteranosRESUMO
BACKGROUND: Few studies have examined comprehensively racial/ethnic variations in quality of end-of-life care. OBJECTIVE: Examine end-of-life care quality received by Veterans and their families, comparing racial/ethnic minorities to nonminorities. RESEARCH DESIGN: This is a retrospective, cross-sectional analysis of chart review and survey data. SUBJECTS: Nearly all deaths in 145 Veterans Affairs Medical Centers nationally (n=94,697) in addition to Bereaved Family Survey (BFS) data (n=51,859) from October 2009 to September 2014. MEASURES: Outcomes included 15 BFS items and 4 indicators of high-quality end-of-life care, including receipt of a palliative care consult, chaplain visit, bereavement contact, and death in hospice/palliative care unit. Veteran race/ethnicity was measured via chart review and defined as non-Hispanic white, non-Hispanic black, Hispanic, or other. RESULTS: In adjusted models, no differences were observed by race/ethnicity in receipt of a palliative care consult or death in a hospice unit. Although black Veterans were less likely than white Veterans to receive a chaplain visit, Hispanic Veterans were more likely than white Veterans to receive a chaplain visit and to receive a bereavement contact. Less favorable outcomes for racial/ethnic minorities were noted on several BFS items. In comparison with family members of white Veterans, families of minority Veterans were less likely to report excellent overall care, and this difference was largest for black Veterans (48% vs. 62%). CONCLUSIONS: Bereaved family members of minority Veterans generally rate the quality of end-of-life care less favorably than those of white Veterans. Family perceptions are critical to the evaluation of equity and quality of end-of-life care.
Assuntos
Etnicidade , Qualidade da Assistência à Saúde , Assistência Terminal/normas , Veteranos , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Estudos Retrospectivos , Estados Unidos , United States Department of Veterans AffairsRESUMO
Palliative care consultation (PCC) during hospitalization is increasingly common for older adults with life-limiting illness discharged to nursing homes. The objective of this qualitative descriptive study was to describe the care trajectories and experiences of older adults admitted to a nursing home following a PCC during hospitalization. Twelve English-speaking adults, mean age 80 years, who received a hospital PCC and discharge to a nursing home without hospice. Data were collected from medical records at five time points from hospital discharge to 100 days after nursing home admission and care trajectories were mapped. Interviews (n = 15) with participants and surrogates were combined with each participant's medical record data. Content analysis was employed on the combined dataset. All PCC referrals were for goals of care conversations during which the PCC team discussed poor prognosis. All participants were admitted to a nursing home under the Medicare skilled nursing facility benefit. Seven were rehospitalized; six of the 12 died within 6 weeks of initial nursing home admission. The two care trajectories were Focus on Rehabilitative Care and Comfort Care Continuity. There was a heavy emphasis on recovering functional status through rehabilitation and skilled nursing care, despite considerable symptom burden and poor prognosis. Regardless of PCC with recommendations for palliative interventions, frail older adults with limited life expectancy and their family caregivers often perceive that rehabilitation will improve physical function. This perception may contribute to inappropriate, ineffective care. More emphasis is needed to coordinate care between PCC recommendations and post-acute care.