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1.
J Pain Symptom Manage ; 68(1): 22-31.e1, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38561132

RESUMO

CONTEXT: Clinical practice guidelines recommend palliative care for people with advanced heart failure (aHF), yet it remains underutilized. OBJECTIVES: We examined medical center variation in specialist palliative care (SPC) and identified factors associated with variation among people with aHF. METHODS: We conducted a retrospective cohort study of 21,654 people with aHF who received healthcare in 83 Veterans Affairs Medical Centers (VAMCs) from 2018-2020. We defined aHF with ICD-9/10 codes and hospitalizations. We used random intercept multilevel logistic regression to derive SPC reach (i.e., predicted probability) for each VAMC adjusting for demographic and clinical characteristics. We then examined VAMC-level SPC delivery characteristics associated with predicted SPC reach including the availability of outpatient SPC (proportion of outpatient consultations), cardiology involvement (number of outpatient cardiology-initiated referrals), and earlier SPC (days from aHF identification to consultation). RESULTS: Of the sample the mean age = 72.9+/-10.9 years, 97.9% were male, 61.6% were White, and 32.2% were Black. The predicted SPC reach varied substantially across VAMCs from 9% to 57% (mean: 28% [95% Confidence Interval: 25%-30%]). Only the availability of outpatient SPC was independently associated with higher SPC reach. VAMCs, in which outpatient delivery made up the greatest share of SPC consultations (9% or higher) had 11% higher rates of SPC reach relative to VAMCs with a lower proportion of outpatient SPC. CONCLUSION: SPC reach varies widely across VAMCs for people with aHF. Outpatient palliative is common among high-reach VAMCs but its role in reach warrants further investigation. Strategies used by high-reach VAMCs may be potential targets to test for implementation and dissemination.


Assuntos
Insuficiência Cardíaca , Cuidados Paliativos , United States Department of Veterans Affairs , Humanos , Insuficiência Cardíaca/terapia , Masculino , Feminino , Idoso , Estados Unidos , Estudos Retrospectivos , Pessoa de Meia-Idade , Encaminhamento e Consulta , Idoso de 80 Anos ou mais , Veteranos , Hospitalização , Hospitais de Veteranos , Especialização
2.
JAMA ; 331(3): 224-232, 2024 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-38227032

RESUMO

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 34 239 patients enrolled, 24 065 had lengths of stay of at least 72 hours and were included in the primary analytic sample (10 313 in the default order group and 13 752 in the usual care group; 13 338 [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.


Assuntos
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/terapia
3.
BMC Palliat Care ; 22(1): 105, 2023 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-37496001

RESUMO

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.


Assuntos
Doença de Alzheimer , Demência , Humanos , Doença de Alzheimer/terapia , Casas de Saúde , Cuidados Paliativos/métodos , Qualidade de Vida
4.
J Pain Symptom Manage ; 66(4): e475-e483, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37364737

RESUMO

BACKGROUND: The measurement of specialist palliative care (SPC) across Department of Veterans Affairs (VA) facilities relies on algorithms applied to administrative databases. However, the validity of these algorithms has not been systematically assessed. MEASURES: In a cohort of people with heart failure identified by ICD 9/10 codes, we validated the performance of algorithms to identify SPC consultation in administrative data and differentiate outpatient from inpatient encounters. INTERVENTION: We derived separate samples of people by receipt of SPC using combinations of stop codes signifying specific clinics, current procedural terminology (CPT), a variable representing encounter location, and ICD-9/ICD-10 codes for SPC. We calculated sensitivity, specificity, and positive and negative predictive values (PPV, NPV) for each algorithm using chart review as the reference standard. OUTCOMES: Among 200 people who did and did not receive SPC (mean age = 73.9 years (standard deviation [SD] = 11.5), 98% male, 73% White), the validity of the stop code plus CPT algorithm to identify any SPC consultation was: Sensitivity = 0.89 (95% Confidence Interval [CI] 0.82-0.94), Specificity = 1.0 [0.96-1.0], PPV = 1.0 [0.96-1.0], NPV = 0.93 [0.86-0.97]. The addition of ICD codes increased sensitivity but decreased specificity. Among 200 people who received SPC (mean age = 74.2 years [SD = 11.8], 99% male, 71% White), algorithm performance in differentiating outpatient from inpatient encounters was: Sensitivity = 0.95 (0.88-0.99), Specificity = 0.81 (0.72-0.87), PPV = 0.38 (0.29-0.49), and NPV = 0.99 (0.95-1.0). Adding encounter location improved the sensitivity and specificity of this algorithm. CONCLUSIONS: VA algorithms are highly sensitive and specific in identifying SPC and in differentiating outpatient from inpatient encounters. These algorithms can be used with confidence to measure SPC in quality improvement and research across the VA.


Assuntos
Veteranos , Humanos , Masculino , Idoso , Feminino , Cuidados Paliativos , Registros Eletrônicos de Saúde , Classificação Internacional de Doenças , Algoritmos , Bases de Dados Factuais
5.
J Pain Symptom Manage ; 65(2): 87-100, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36395918

RESUMO

CONTEXT: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. OBJECTIVES: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. METHODS: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. RESULTS: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures ("Feeling Heard and Understood" and "Receiving Desired Help for Pain") for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. CONCLUSION: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.


Assuntos
Cuidados Paliativos , Indicadores de Qualidade em Assistência à Saúde , Idoso , Humanos , Estados Unidos , Reprodutibilidade dos Testes , Medicare , Medidas de Resultados Relatados pelo Paciente
7.
J Palliat Med ; 25(12): 1774-1781, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35763838

RESUMO

Background: Clinical practice guidelines recommend integrating palliative care (PC) into the care of patients with heart failure (HF) to address their many palliative needs. However, the incidence rates of PC use among HF subtypes are unknown. Methods: We conducted a retrospective cohort study of patients with the following HF subtypes in the Department of Veterans Affairs: reduced ejection fraction (HFrEF), mid-range ejection fraction (HFmEF), and preserved ejection fraction (HFpEF). Patients were included at the time of HF diagnosis from 2011 to 2015 and followed until a minimum of five years or death. Incidence rates of receipt of PC (primary outcome) were calculated using generalized estimating equations. We evaluated the time to incident PC by HF subtype with Kaplan-Meier analyses and with adjusted restricted mean survival time. Results: Of the 113,555 patients, 69% were ≥65 years, 98% were male, 73% White, and 18% Black; 58% had HFrEF, 7% HFmEF, and 34% HFpEF. Twenty percent received PC during follow-up, and 66% died. Adjusted PC incidence rates were higher among patients with HFrEF (47 per 1000 person-years, confidence interval [95% CI] 43-52) than for HFmEF and HFpEF (42 per 1000 person-years, CI 38-47 for both). Restricting follow-up to five years, patients with HFrEF received PC six weeks earlier than patients with HFpEF. There was no significant difference in time to PC between patients with HFmEF versus HFpEF. Conclusion: About 1 in 20 patients with HFrEF and 1 in 25 patients with HFmEF and HFpEF receive PC annually. Patients with HFrEF receive PC sooner than patients with HFmEF and HFpEF.


Assuntos
Insuficiência Cardíaca , Cuidados Paliativos , Estados Unidos , Humanos , Masculino , Feminino , Insuficiência Cardíaca/terapia , Estudos Retrospectivos , Volume Sistólico
8.
J Pain Symptom Manage ; 64(2): e63-e69, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35489665

RESUMO

CONTEXT: Palliative care consultations (PCCs) are associated with reduced physical and psychological symptoms that are related to suicide risk. Little is known, however, about the association between PCCs and death from suicide among patients at high risk of short-term mortality. OBJECTIVE: To examine the association between the number of PCCs and documentation of suicide in a cohort of Veterans at high risk of short-term mortality, before and after accounting for Veterans' sociodemographic characteristics and clinical conditions. METHODS: An observational cohort study was conducted using linked Veterans Affairs clinical and administrative databases for 580,620 decedents with high risk of one-year mortality. Logistic regression models were used to examine the association between number of PCCs and documentation of suicide. RESULTS: Higher percentages of Veterans who died by suicide were diagnosed with chronic pulmonary disease as well as mental health/substance use conditions compared with Veterans who died from other causes. In adjusted models, one PCC in the 90 days prior to death was significantly associated with a 71% decrease in the odds of suicide (OR = 0.29, 95% CI = 0.23-0.37, P < 0.001) and two or more PCCs were associated with a 78% decrease (OR = 0.22, 95% CI = 0.15-0.33, P < 0.001). Associated "number needed to be exposed" estimates suggest that 421 Veterans in this population would need to receive at least one PCC to prevent one suicide. CONCLUSION: While acknowledging the importance of specialized mental health care in reducing suicide among high-risk patients, interventions delivered in the context of PCCs may also play a role.


Assuntos
Suicídio , Veteranos , Estudos de Coortes , Humanos , Saúde Mental , Cuidados Paliativos , Suicídio/psicologia , Estados Unidos/epidemiologia , United States Department of Veterans Affairs , Veteranos/psicologia
10.
J Am Med Dir Assoc ; 23(2): 247-252, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34953767

RESUMO

Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to long-term care residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care consultation through community- or hospital-based programs and facility-based palliative care services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches' effectiveness is inadequate. In this article, we review the existing evidence and challenges with each of these 3 approaches. We then describe a model for effective delivery of palliative and end-of-life care in nursing homes, one in which palliative and end-of-life care are seen as integral to high-quality nursing home care. To achieve this vision, we make 4 recommendations: (1) promote internal palliative and end-of-life care capacity through comprehensive training and support; (2) ensure that state and federal payment policies and regulations do not create barriers to delivering high-quality, person-centered palliative and end-of-life care; (3) align nursing home quality measures to include palliative and end-of-life care-sensitive indicators; and (4) support access to and integration of external palliative care services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and end-of-life care, and this article describes some key strategies to make this goal a reality.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Assistência Terminal , Humanos , Casas de Saúde , Cuidados Paliativos
11.
J Am Assoc Nurse Pract ; 34(1): 142-152, 2021 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-33625167

RESUMO

ABSTRACT: Current palliative care workforce projections indicate that the growing palliative care needs of older adults in US nursing homes cannot be met by specialists, leaving them vulnerable and at risk for poor end-of-life outcomes. The purpose of this article is to describe the development, implementation, and initial evaluation of a program to support primary care nursing home nurse practitioners (NPs) in palliative care. The program aimed to improve geriatric NPs' knowledge and skills related to palliative care and to provide a structured protocol for integrating palliative care encounters into NPs' practice. It comprised three phases consisting of asynchronous online learning modules, a 1-day face-to-face communication skills and patient simulation workshop, and ongoing monthly virtual meetings to support NP clinical practice. Over a 1-year period, the program was developed and implemented with 12 practicing NPs in a national organization. Through an online survey and face-to-face feedback, NPs reported satisfaction with the curriculum and expressed it as valuable to their clinical practice. Future work will focus on sustaining implementation of the program, measuring patient level outcomes, and refining the curriculum based on NP feedback.


Assuntos
Profissionais de Enfermagem , Cuidados Paliativos , Idoso , Currículo , Humanos , Casas de Saúde , Atenção Primária à Saúde
12.
BMC Palliat Care ; 20(1): 17, 2021 Jan 14.
Artigo em Inglês | MEDLINE | ID: mdl-33446192

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Assistência Terminal , Criança , Humanos , Cuidados Paliativos , Pais , Qualidade de Vida
13.
J Pain Symptom Manage ; 61(4): 713-722.e1, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32931904

RESUMO

CONTEXT: Improving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal. OBJECTIVES: To determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients. METHODS: Retrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013 to 2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family reported excellent EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation, receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit death. RESULTS: Of 6256 patients, mean age was 77.4 (SD = 11.1), 98.3% were male, 75.7% were white, and 18.2% were black. Median hospital scores of "excellent" EOLC ranged from 41.3% (interquartile range 37.0%-44.8%) in the lowest quintile to 76.4% (interquartile range 72.9%-80.3%) in the highest quintile. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly although not significantly more likely to receive a palliative care consultation (adjusted proportions 57.6% vs. 51.2%; P = 0.32) but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%), and hospice (59.7% vs. 35.9%) and were less likely to die in the intensive care unit (15.9% vs. 31.0%; P < 0.05 for all). CONCLUSION: Patients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best practices in EOLC across health care systems.


Assuntos
Insuficiência Cardíaca , Assistência Terminal , Idoso , Família , Insuficiência Cardíaca/terapia , Humanos , Masculino , Cuidados Paliativos , Qualidade da Assistência à Saúde , Estudos Retrospectivos
14.
J Pain Symptom Manage ; 61(4): 743-754.e1, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32911038

RESUMO

CONTEXT: As part of its Life-Sustaining Treatment (LST) Decisions Initiative, the Veterans Health Administration (VA) in January 2017 began requiring electronic documentation of goals of care and preferences for Veterans with serious illness and at high risk for life-threatening events. OBJECTIVES: To evaluate whether goals of "to be comfortable" were associated with greater palliative care (PC) use and lesser acute care use. METHODS: We identified Veterans with VA inpatient or nursing home stays overlapping July 2018-January 2019, with LST templates documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). From template documentation, we identified a "to be comfortable" goal. Using VA and Medicare data, we determined PC use (consultations and hospice) and hospital, intensive care unit, and emergency department use 7 and 30 days before death. Multivariate logistic regression examined the associations of interest. RESULTS: Sixty-four percent of the 18,163 Veterans had comfort-care goals; 80% with comfort care goals received hospice and 57% PC consultations (versus 57% and 46%, respectively, for decedents without comfort-care goals). In adjusted analyses, comfort care documented on the LST template prior to death was associated with significantly lower odds of hospital, intensive care unit, and emergency department use near the end of life. In the last 30 days of life, Veterans with a comfort care goal had 44% lower odds (adjusted odds ratio 0.57; 95% CI: 0.51, 0.63) of being hospitalized. CONCLUSION: Findings support the VA's commitment to honoring of Veterans' preferences post introduction of its Life Sustaining Treatment Decisions Initiative.


Assuntos
Assistência Terminal , Veteranos , Idoso , Morte , Objetivos , Humanos , Medicare , Cuidados Paliativos , Planejamento de Assistência ao Paciente , Conforto do Paciente , Estados Unidos
15.
J Pain Symptom Manage ; 62(1): 183-191, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33129936

RESUMO

Palliative care research raises a host of ethical concerns. Obtaining informed consent from seriously ill patients and their families is often perceived as an additional burden. Alternative approaches to traditional written informed consent reflect the changing nature of modern trial design, embracing real-world effectiveness and pragmatic clinical trials with those who are seriously ill. Ethicists, clinical investigators, and regulatory bodies have acknowledged the challenges to rigorous, meaningful, and generalizable research across diverse patient populations in real-world settings. The purpose of this article is to describe how these clinical trial designs have driven innovation in methods for achieving informed consent, with a focus on palliative care research. In this article, we describe and provide examples of consent waivers and three types of alternative approaches to consent, including broadcast notification and integrated and targeted consent. We also present our experiences in an ongoing palliative care clinical trial, specifically using broadcast notification. Working with participants and regulatory oversight organizations, investigators can address the limits of traditional written informed consent and adopt innovative consent models to advance the science of palliative care. Research is now needed to determine the impact of these differing consent models on clinical trial recruitment, enrollment, and retention, as well as participants' informed understanding of their research participation using such models.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Consentimento Livre e Esclarecido , Pesquisadores
16.
J Pain Symptom Manage ; 61(1): 12-23, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32745574

RESUMO

CONTEXT: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVES: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiversupportat the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed. CONCLUSION: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Criança , Humanos , Cuidados Paliativos , Pais
17.
Clin Transplant ; 34(12): e14092, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32978822

RESUMO

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.


Assuntos
Transplante de Pulmão , Cuidados Paliativos , Estudos Transversais , Feminino , Humanos , Masculino , Religião
18.
J Am Geriatr Soc ; 68(10): 2365-2372, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32748393

RESUMO

BACKGROUND/OBJECTIVES: Specialty palliative care for hospitalized patients with dementia is widely recommended and may improve outcomes, yet rates of consultation remain low. We sought to describe hospitalists' decision-making regarding palliative care consultation for patients with dementia. DESIGN: Descriptive qualitative study. SETTING: Seven hospitals within a national nonprofit health system. PARTICIPANTS: Hospitalist physicians. MEASUREMENTS: Individual semistructured interviews. We used thematic analysis to explore factors that influence hospitalists' decision to consult palliative care for patients with dementia. RESULTS: A total of 171 hospitalists were eligible to participate, and 28 (16%) were interviewed; 17 (61%) were male, 16 (57%) were white, and 18 (64%) were in practice less than 10 years. Overall, hospitalists' decisions to consult palliative care for patients with dementia were influenced by multiple factors across four themes: patient, family caregiver, hospitalist, and organization. Consultation was typically only considered for patients with advanced disease, particularly those receiving aggressive care or with family communication needs (navigating conflicts around goals of care and improving disease and prognostic understanding). Hospitalists' limited time and, for some, a lack of confidence in palliative care skills were strong drivers of consultation. Palliative care needs notwithstanding, most hospitalists would not request consultation if they perceived families would be resistant to it or had limited availability or involvement in caregiving. Additional barriers to referral at the organization level included a hospital culture that conflated palliative and end-of-life care and busy palliative care teams at some hospitals. CONCLUSION: Hospitalists described a complex consultation decision process for involving palliative care specialists in the care of patients with dementia. Systematic identification of hospitalized patients with dementia most likely to benefit from palliative care consultation and strategies to overcome modifiable family and organization barriers are needed. J Am Geriatr Soc 68:2365-2372, 2020.


Assuntos
Atitude do Pessoal de Saúde , Demência , Médicos Hospitalares/psicologia , Cuidados Paliativos/psicologia , Encaminhamento e Consulta , Adulto , Tomada de Decisão Clínica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
19.
Prog Transplant ; 30(2): 147-154, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32242494

RESUMO

BACKGROUND: Lung transplant patients experience significant physical symptoms and psychological stress that affect their quality of life. Palliative care is an interdisciplinary specialty associated with improved symptom management and enhanced quality of life. Little, however, is known about the palliative care needs of lung transplant patients and the role it plays in their care. AIM: The aim of this integrative review was to synthesize the literature describing the palliative care needs, the current role, and factors influencing the integration of palliative care in the care of lung transplant patients. DESIGN/DATA SOURCES: We searched PubMed, Scopus, CINAHL, and Embase to identify English-language, primary studies focused on palliative care in adult lung transplantation. Study quality was evaluated using Strengthening the Report of Observational studies in Epidemiology and Consolidated Criteria for Reporting Qualitative Research criteria. RESULTS: Seven articles were included in the review. Most were single-center, descriptive studies. Two studies used qualitative and 5 used quantitative methodologies. Collectively, these studies suggest that palliative care is typically consulted for physical and psychological symptom management, although consultation is uncommon and often occurs late in the lung transplant process. We found no studies that systematically assessed palliative needs. Misperceptions about palliative care, communication challenges, and unrealistic patient/family expectations are identified barriers to the integration. While limited, evidence suggests that palliative care can be successfully integrated into lung transplant patient management. CONCLUSIONS: Empirical literature about palliative care in lung transplantation is sparse. Further research is needed to define the needs and opportunities for integration into the care of these patients.


Assuntos
Transplante de Pulmão , Cuidados Paliativos , Qualidade de Vida , Humanos
20.
J Am Geriatr Soc ; 68(4): 725-735, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32052858

RESUMO

OBJECTIVES: Continuation of aspirin for secondary prevention in persons with limited life expectancy (LLE) is controversial. We sought to determine the incidence and predictors of aspirin discontinuation in veterans with LLE and/or advanced dementia (LLE/AD) who were taking aspirin for secondary prevention at nursing home admission, stratified by whether their limited prognosis (LP) was explicitly documented at admission. DESIGN: Retrospective cohort study using linked Veterans Affairs (VA) and Medicare clinical/administrative data and Minimum Data Set resident assessments. SETTING: All VA nursing homes (referred to as community living centers [CLCs]) in the United States. PARTICIPANTS: Older (≥65 y) CLC residents with LLE/AD, admitted for 7 days or longer in fiscal years 2009 to 2015, who had a history of coronary artery disease and/or stroke/transient ischemic attack, and used aspirin within the first week of CLC admission (n = 13 844). MEASUREMENTS: The primary dependent variable was aspirin discontinuation within the first 90 days after CLC admission, defined as 14 consecutive days of no aspirin receipt. Independent variables included an indicator for explicit documentation of LP, sociodemographics, environment of care characteristics, cardiovascular risk factors, bleeding risk factors, individual markers of poor prognosis (eg, cancer, weight loss), and facility characteristics. Fine and Gray subdistribution hazard models with death as a competing risk were used to assess predictors of discontinuation. RESULTS: Cumulative incidence of aspirin discontinuation was 27% (95% confidence interval [CI] = 26%-28%) in the full sample, 34% (95% CI = 33%-36%) in residents with explicit documentation of LP, and 24% (95% CI = 23%-25%) in residents with no such documentation. The associations of independent variables with aspirin discontinuation differed in residents with vs without explicit LP documentation at admission. CONCLUSION: Just over one-quarter of patients discontinued aspirin, possibly reflecting the unclear role of aspirin in end of life among prescribers. Future research should compare outcomes of aspirin deprescribing in this population. J Am Geriatr Soc 68:725-735, 2020.


Assuntos
Aspirina/uso terapêutico , Desprescrições , Instituições de Cuidados Especializados de Enfermagem/estatística & dados numéricos , Assistência Terminal/métodos , Veteranos/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Doença Crônica/epidemiologia , Demência/epidemiologia , Feminino , Fatores de Risco de Doenças Cardíacas , Humanos , Masculino , Estudos Retrospectivos , Prevenção Secundária/métodos , Estados Unidos/epidemiologia , United States Department of Veterans Affairs
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