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Importance: Numerous studies show that early palliative care improves quality of life and other key outcomes in patients with advanced cancer and their caregivers, although most lack access to this evidence-based model of care. Objective: To evaluate whether delivering early palliative care via secure video vs in-person visits has an equivalent effect on quality of life in patients with advanced non-small cell lung cancer (NSCLC). Design, Setting, and Participants: Randomized, multisite, comparative effectiveness trial from June 14, 2018, to May 4, 2023, at 22 US cancer centers among 1250 patients within 12 weeks of diagnosis of advanced NSCLC and 548 caregivers. Intervention: Participants were randomized to meet with a specialty-trained palliative care clinician every 4 weeks either via video visit or in person in the outpatient clinic from the time of enrollment and throughout the course of disease. The video visit group had an initial in-person visit to establish rapport, followed by subsequent virtual visits. Main Outcomes and Measures: Equivalence of the effect of video visit vs in-person early palliative care on quality of life at week 24 per the Functional Assessment of Cancer Therapy-Lung questionnaire (equivalence margin of ±4 points; score range: 0-136, with higher scores indicating better quality of life). Participants completed study questionnaires at enrollment and at weeks 12, 24, 36, and 48. Results: By 24 weeks, participants (mean age, 65.5 years; 54.0% women; 82.7% White) had a mean of 4.7 (video) and 4.9 (in-person) early palliative care encounters. Patient-reported quality-of-life scores were equivalent between groups (video mean, 99.7 vs in-person mean, 97.7; difference, 2.0 [90% CI, 0.1-3.9]; P = .04 for equivalence). Rate of caregiver participation in visits was lower for video vs in-person early palliative care (36.6% vs 49.7%; P < .001). Study groups did not differ in caregiver quality of life, patient coping, or patient and caregiver satisfaction with care, mood symptoms, or prognostic perceptions. Conclusions and Relevance: The delivery of early palliative care virtually vs in person demonstrated equivalent effects on quality of life in patients with advanced NSCLC, underscoring the considerable potential for improving access to this evidence-based care model through telehealth delivery. Trial Registration: ClinicalTrials.gov Identifier: NCT03375489.
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BACKGROUND: Disparity in mental health care among cancer patients remains understudied. METHODS: A large, retrospective, single tertiary-care institution cohort study was conducted based on deidentified electronic health record data of 54,852 adult cancer patients without prior mental health diagnosis (MHD) diagnosed at the University of California, San Francisco between January 2012 and September 2019. The exposure of interest was early-onset MHD with or without psychotropic medication (PM) within 12 months of cancer diagnosis and primary outcome was all-cause mortality. RESULTS: There were 8.2% of patients who received a new MHD at a median of 197 days (interquartile range, 61-553) after incident cancer diagnosis; 31.0% received a PM prescription; and 3.7% a mental health-related visit (MHRV). There were 62.6% of patients who were non-Hispanic White (NHW), 10.8% were Asian, 9.8% were Hispanic, and 3.8% were Black. Compared with NHWs, minority cancer patients had reduced adjusted odds of MHDs, PM prescriptions, and MHRVs, particularly for generalized anxiety (Asian odds ratio [OR], 0.66, 95% CI, 0.55-0.78; Black OR, 0.60, 95% CI, 0.45-0.79; Hispanic OR, 0.72, 95% CI, 0.61-0.85) and selective serotonin-reuptake inhibitors (Asian OR, 0.43, 95% CI, 0.37-0.50; Black OR, 0.51, 95% CI, 0.40-0.61; Hispanic OR, 0.79, 95% CI, 0.70-0.89). New early MHD with PM was associated with elevated all-cause mortality (12-24 months: hazard ratio [HR], 1.43, 95% CI, 1.25-1.64) that waned by 24 to 36 months (HR, 1.18, 95% CI, 0.95-1.45). CONCLUSIONS: New mental health diagnosis with PM was a marker of early mortality among cancer patients. Minority cancer patients were less likely to receive documentation of MHDs or treatment, which may represent missed opportunities to identify and treat cancer-related mental health conditions.
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Saúde Mental , Neoplasias , Adulto , Estudos de Coortes , Registros Eletrônicos de Saúde , Humanos , Neoplasias/diagnóstico , Estudos RetrospectivosRESUMO
The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017.
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PURPOSE: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer. METHODS: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed. RESULTS: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer. CONCLUSIONS: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.
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Diretivas Antecipadas/estatística & dados numéricos , Neoplasias Colorretais/terapia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos/métodos , Planejamento Antecipado de Cuidados , Cuidadores , Estudos de Coortes , Neoplasias Colorretais/patologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
In recent years, the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Adult Cancer Pain have undergone substantial revisions focusing on the appropriate and safe prescription of opioid analgesics, optimization of nonopioid analgesics and adjuvant medications, and integration of nonpharmacologic methods of cancer pain management. This selection highlights some of these changes, covering topics on management of adult cancer pain including pharmacologic interventions, nonpharmacologic interventions, and treatment of specific cancer pain syndromes. The complete version of the NCCN Guidelines for Adult Cancer Pain addresses additional aspects of this topic, including pathophysiologic classification of cancer pain syndromes, comprehensive pain assessment, management of pain crisis, ongoing care for cancer pain, pain in cancer survivors, and specialty consultations.
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Dor do Câncer/diagnóstico , Dor do Câncer/terapia , Neoplasias/complicações , Manejo da Dor , Adulto , Fatores Etários , Dor do Câncer/etiologia , Terapia Combinada/efeitos adversos , Terapia Combinada/métodos , HumanosRESUMO
BACKGROUND: ASCO and IOM recommend palliative care (PC) across health care settings for patients with serious illnesses, including cancer. This study provides an overview of the current availability, structure, and basic quality of PC services within NCCN Member Institutions. METHODS: A PC survey was developed by NCCN staff and a working group of PC experts from 11 NCCN Member Institutions under the auspices of the NCCN Best Practices Committee. The survey was piloted and refined by 3 working group members and sent electronically to all 26 NCCN Member Institutions. NCCN staff and working group leaders analyzed the survey data. RESULTS: A total of 22 of 26 institutions responded (85%). All respondents (100%) reported an inpatient PC consult service (staffed by an average of 6.8 full-time equivalents [FTEs], seeing 1,031 consults/year with an average length of stay [LOS] of 10 days). A total of 91% of respondents had clinic-based PC (with an average of 469 consults/year, staffed by an average of 6.8 FTEs, and a 17-day wait time). For clinics, a comanagement care delivery model was more common than strict consultation. Home-based PC (23%) and inpatient PC units (32%) were less prevalent. Notably, 80% of institutions reported insufficient PC capacity compared with demand. Across PC settings, referrals for patients with solid tumors were more common than for hematologic malignancies. Automatic or "triggered" referrals were rare. The most common services provided were symptom management (100%) and advance care planning (96%). Most programs were funded through fee-for-service billing and institutional support. Partnerships with accountable care organizations and bundled payment arrangements were infrequent. PC program data collection and institutional funding for PC research were variable across institutions. CONCLUSIONS: Despite the prevalence of PC inpatient and clinic services among participating NCCN Member Institutions, PC demand still exceeds capacity. Opportunities exist for expansion of home-based PC and inpatient PC units, optimizing referrals, research, and payer collaborations.
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Neoplasias/reabilitação , Cuidados Paliativos , Institutos de Câncer , Feminino , História do Século XXI , Humanos , Masculino , Inquéritos e Questionários , Estados UnidosRESUMO
THEORY: Elective courses, by definition, allow medical students to self-select for participation in the class. In a small-group learning setting, students uninterested or not ready for a particular learning topic might change the educational experience ("poison the well") for those students most interested in the topic. It is not known how medical students required to take a course in humanism (that they otherwise would not have elected to take) might be impacted by the course or how their presence might affect students originally interested in the course. HYPOTHESES: Medical students in a required course on humanism and values in medicine will have different experiences based on whether a particular student might have or not have elected to enroll in the course. Students uninterested in taking a course in humanism and values, but required to enroll, will limit the benefit of the course for those students originally interested in participating. METHOD: In 2012, all 1st-year students at a U.S. medical school were required to take the Healer's Art, an elective on professional values and humanism offered at more than 90 other schools in the United States and internationally. Students completed pre/postcourse surveys assessing emotional exhaustion, work engagement, positive emotions, and cynicism. We analyzed differences between those who would have elected to take the course (Elective students) and those who would not have elected to take it (Required students). RESULTS: Elective students did not differ from Required students in baseline demographic characteristics, emotional exhaustion, work engagement, or positive emotions. At baseline, Elective students did report feeling safer to talk openly, a greater sense of community, and higher levels of cynicism. Over time, there were no differences in course evaluations or outcomes between Elective and Required students. CONCLUSIONS: Required students do not differ greatly from those who would have elected to take Healer's Art, and all students appear to have similar experiences in the course.
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Currículo , Humanismo , Programas Obrigatórios , Faculdades de Medicina , Estudantes/psicologia , Valor da Vida , Adulto , Feminino , Humanos , Masculino , New Jersey , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Although much evidence has accumulated demonstrating its benefit, relatively little is known about outpatient palliative care in patients with cancer. METHODS: This paper reviews the literature and perspectives from content experts to describe the current state of outpatient palliative care in the oncology setting and current areas of innovation and promise in the field. RESULTS: Evidence, including from controlled trials, documents the benefits of outpatient palliative care in the oncology setting. As a result, professional medical organizations have guidelines and recommendations based on the key role of palliative care in oncology. Six elements of the practice sit at the frontier of outpatient oncology palliative care, including the setting and timing of palliative care integration into outpatient oncology, the relationships between primary and specialty palliative care, quality and measurement, research, electronic and technical innovations, and finances. CONCLUSIONS: Evidence of clinical and health care system benefits supports the recommendations of professional organizations to integrate palliative care into the routine treatment of patients with advanced cancer.
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Neoplasias/terapia , Cuidados Paliativos/métodos , Humanos , Oncologia/métodos , Pacientes Ambulatoriais , Qualidade de VidaRESUMO
PURPOSE: Spiritual well-being is threatened by cancer, but its correlation with other illness symptoms and the efficacy of palliative care (PC) to ameliorate spiritual suffering are not well understood. METHODS: We conducted a retrospective study using a convenience sample of oncology patients at a comprehensive cancer center who received concurrent oncologic and palliative care between 2008 and 2011 and completed ESAS, QUAL-E, and Steinhauser Spiritual well-being survey questions was conducted. Descriptive, correlation, and t test statistics. RESULTS: Eight hundred eighty-three patients surveyed had an average age of 65.6 years, with 54.1 % female, 69.3 % white, and 49.3 % married. Half (452, 51.2 %) had metastatic disease. Religious affiliation was reported as Christian by 20.3 %, Catholic by 18.7 %, and "none" by 39.0 %. Baseline spiritual well-being was not significantly correlated with age, gender, race, cancer stage, marital status, insurance provider, or having a religious affiliation. Greater spiritual well-being was correlated with greater quality of life (
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Neoplasias/psicologia , Pacientes Ambulatoriais/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Ansiedade/psicologia , Depressão/psicologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/terapia , Pacientes Ambulatoriais/estatística & dados numéricos , Cuidados Paliativos/métodos , Religião e Medicina , Estudos RetrospectivosRESUMO
PURPOSE: We characterized the natural history of symptoms with time in patients with bladder cancer undergoing cystectomy. MATERIALS AND METHODS: For 6 months we followed 33 participants treated with muscle invasive bladder cancer treatment with cystectomy in this prospective cohort study. Patients and family caregivers completed validated symptom assessment and satisfaction surveys at baseline, and 2, 4 and 6 months later. Primary outcomes were the change from baseline in pain, fatigue, depression, anxiety, quality of life and spiritual well-being. Secondary outcomes included posttraumatic growth, patient satisfaction and family caregiver burden. RESULTS: Pain increased after radical cystectomy and remained increased 6 months postoperatively based on Brief Pain Inventory scores (baseline and 6-month scores 4.0, 95% CI 0-8.0 and 9.8, 95% CI 1.9-17.6, respectively, p = 0.03). Posttraumatic growth showed a trend toward an increase at 2 months (p = 0.06). Fatigue peaked at 4 months but did not change significantly with time (p = 0.12). There was similarly no significant change with time in depression, anxiety, quality of life, spiritual well-being or satisfaction. Neither family caregiver burden nor satisfaction showed a statistically significant change with time postoperatively. CONCLUSIONS: Pain increased after radical cystectomy and remained increased 6 months postoperatively. There was a trend toward increased posttraumatic growth at 2 months. Otherwise, by 6 months cystectomy was associated with no improvement in preoperative symptoms of fatigue, quality of life, spiritual well-being, depression or anxiety. After cystectomy pain should be assessed and treated more aggressively in patients with bladder cancer and efforts should be made to improve postoperative symptoms.
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Cistectomia , Saúde da Família , Neoplasias da Bexiga Urinária/psicologia , Neoplasias da Bexiga Urinária/cirurgia , Cuidadores/psicologia , Humanos , Invasividade Neoplásica , Dor/epidemiologia , Complicações Pós-Operatórias/epidemiologia , Estudos Prospectivos , Estresse Psicológico/epidemiologia , Inquéritos e Questionários , Avaliação de Sintomas , Neoplasias da Bexiga Urinária/patologiaRESUMO
BACKGROUND: Medical teachers report both positive and negative experiences, but these impacts are not well understood. In particular, the experience of faculty in relationship-centered education is unknown. PURPOSES: We sought to assess the benefits to teachers of the Healer's Art, a popular international medical school elective course. METHODS: We performed quantitative and qualitative analyses of course evaluations completed by 2009-10 Healer's Art faculty from 17 schools. RESULTS: Ninety-nine of 117 faculty (84.6%) completed the evaluation. No differences in quantitative responses based on gender, specialty, medical school, or year of graduation were observed. Respondents were likely or very likely to agree that the course was useful, positively impacted clinical work and teaching, and increased overall commitment to teaching. In describing the benefits of teaching in the Healer's Art, faculty emphasized four themes: Personal Response to Medicine, Professional Growth, Greater Connection, and Greater Empathy and Respect for Students. CONCLUSIONS: Healer's Art faculty report personal and professional benefits, as well as increased commitment to teaching and to a relationship-centered educational process.
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Currículo , Educação de Graduação em Medicina , Docentes de Medicina , Humanismo , Atitude do Pessoal de Saúde , Feminino , Humanos , Relações Interpessoais , Masculino , Relações Médico-Paciente , Pesquisa QualitativaRESUMO
PURPOSE: To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. METHODS: ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. RESULTS: The literature search identified 52 relevant studies to inform the evidence base for this guideline. RECOMMENDATIONS: Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.
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Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/normas , Neoplasias/terapia , Qualidade de Vida , Oncologia/normasRESUMO
Pain is a common symptom associated with cancer and its treatment. Pain management is an important aspect of oncologic care, and unrelieved pain significantly comprises overall quality of life. These NCCN Guidelines list the principles of management and acknowledge the range of complex decisions faced in the management oncologic pain. In addition to pain assessment techniques, these guidelines provide principles of use, dosing, management of adverse effects, and safe handling procedures of pharmacologic therapies and discuss a multidisciplinary approach for the management of cancer pain.
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Neoplasias/terapia , Manejo da Dor/métodos , Dor/complicações , Acetaminofen/uso terapêutico , Analgésicos Opioides/uso terapêutico , Anti-Inflamatórios não Esteroides/uso terapêutico , Humanos , Dor/tratamento farmacológico , Medição da Dor , Apoio SocialRESUMO
PURPOSE: Although outpatient palliative care clinics are increasingly common, evidence for their efficacy remains limited. METHODS: We conducted an observational study at the palliative care clinic of an academic cancer center to assess the association between palliative care co-management and symptoms and quality of life. Two hundred sixty-six adult outpatients were seen for a minimum of two palliative care visits within 120 days. A subset of 142 patients was seen for a third visit within 240 days. Patients completed a questionnaire containing validated symptom, quality of life, and spiritual wellbeing questions at each visit. RESULTS: The first follow-up visit was on average 41 days after the initial visit; the second follow-up visit was on average 81 days after the initial visit. Between the initial and first follow-up visits, there was significant improvement in pain (p < 0.001), fatigue (p < 0.001), depression (p < 0.001), anxiety (p < 0.001), quality of life (p = 0.002), and spiritual wellbeing (p < 0.001), but not nausea (p = 0.14). For the subset of patients seen for a second follow-up visit, the improvements in pain, fatigue, depression, anxiety, quality of life, and spiritual wellbeing persisted (p ≤ 0.005 for trend of each symptom). Patients had similar improvement regardless of their gender, age, ethnicity, disease stage, disease progression, and concurrent oncologic treatments. CONCLUSIONS: Palliative care was associated with significant improvement in nearly all the symptoms evaluated. A sustained change in symptoms was observed in the subset of patients seen for a second follow-up visit. Members of all subgroups improved.
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Fadiga/terapia , Náusea/terapia , Neoplasias/complicações , Neoplasias/terapia , Pacientes Ambulatoriais/psicologia , Cuidados Paliativos/métodos , Adulto , Idoso , Ansiedade/psicologia , Ansiedade/terapia , Depressão/psicologia , Depressão/terapia , Progressão da Doença , Fadiga/etiologia , Fadiga/psicologia , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Náusea/etiologia , Náusea/psicologia , Neoplasias/psicologia , Dor/etiologia , Dor/psicologia , Manejo da Dor/métodos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
Outpatient palliative care facilitates timely symptom management, psychosocial care and care planning. A growing number of cancer centers have either stand-alone or embedded outpatient palliative care clinics. In this "Controversies in Palliative Care" article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. One group advocates for stand-alone clinics, another for embedded, and the third group tries to find a balance. In the absence of evidence that directly compares the two models, factors such as cancer center size, palliative care team composition, clinic space availability, and financial considerations may drive the decision-making process at each institution. Stand-alone clinics may be more appropriate for larger academic cancer centers or palliative care programs with a more comprehensive interdisciplinary team, while embedded clinics may be more suited for smaller palliative care programs or community oncology programs to stimulate referrals. As outpatient clinic models continue to evolve, investigators need to document the referral and patient outcomes to inform practice.
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Neoplasias , Cuidados Paliativos , Humanos , Pacientes Ambulatoriais , Neoplasias/terapia , Instituições de Assistência Ambulatorial , Assistência Ambulatorial , Encaminhamento e ConsultaRESUMO
CONTEXT: Little is known about equity in utilization of outpatient palliative care (PC). OBJECTIVES: To explore whether patient-level factors are associated with completing initial and follow-up visits among patients referred to outpatient PC. METHODS: Using electronic health record data, we generated a cohort of all adults referred to outpatient PC at University of California, San Francisco October 2017-October 2021. We assessed whether demographic and clinical characteristics were associated with completion of 1) an initial PC visit and 2) at least one follow-up visit. RESULTS: Of patients referred to outpatient PC (N = 6,871), 60% completed an initial visit; 66% of those who established care returned for follow-up. In multivariable models, patients who were less likely to complete an initial visit were older (OR per decade 0.94; 95% confidence interval [CI] 0.89-0.98), Black (OR 0.71; 95% CI 0.56-0.90), Latinx (OR 0.69; 95% CI 0.57-0.83), unpartnered (OR 0.80; 95% CI 0.71-0.90), and had Medicaid (OR 0.82; 95% CI 0.69-0.97). Among patients who completed an initial visit, those less likely to complete a follow-up visit were older (OR 0.88; 95% CI 0.82-0.94), male (OR 0.83; 95% CI 0.71-0.96), preferred a language other than English (0.71; 95% CI 0.54-0.95), and had a serious illness other than cancer (OR 0.74; 95% CI 0.61-0.90). CONCLUSION: We found that Black and Latinx patients were less likely to complete an initial visit and those with a preferred language other than English were less likely to complete a follow-up visit. To promote equity in PC, these differences and their impact on outcomes must be explored.
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Neoplasias , Cuidados Paliativos , Adulto , Estados Unidos , Humanos , Masculino , Pacientes Ambulatoriais , Assistência Ambulatorial , Neoplasias/epidemiologia , Neoplasias/terapia , Demografia , Estudos RetrospectivosRESUMO
This serves as a white paper by the North American Neuroendocrine Tumor Society (NANETS) on the practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care. The authors involved in the development of this manuscript represent a multidisciplinary team of patient advocacy, palliative care, and hospice care practitioners, endocrinologist, and oncologists who performed a literature review and provided expert opinion on a series of questions often asked by our patients and patient caregivers affected by this disease. We hope this document serves as a starting point for oncologists, palliative care teams, hospice medical teams, insurers, drug manufacturers, caregivers, and patients to have a frank, well-informed discussion of what a patient needs to maximize the quality of life during a routine, disease-directed care as well as at the end-of-life.
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Cuidados Paliativos na Terminalidade da Vida , Tumores Neuroendócrinos , Humanos , Cuidados Paliativos , Tumores Neuroendócrinos/terapia , Qualidade de Vida , Gerenciamento ClínicoRESUMO
CONTEXT/OBJECTIVES: A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations. METHODS: An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions. RESULTS: A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase. CONCLUSION: Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life.
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Planejamento Antecipado de Cuidados , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Idoso , Humanos , Estados Unidos , Cuidados Paliativos/métodos , Qualidade de Vida , Pacientes Ambulatoriais , MedicareRESUMO
Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Feminino , Humanos , Idoso , Masculino , Cuidados Paliativos/psicologia , Acedapsona , Qualidade de Vida/psicologia , Ansiedade , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
Chronic obstructive pulmonary disease (COPD), a common disease in elderly patients, is characterized by high symptom burden, health care utilization, mortality, and unmet needs of patients and caregivers. Respiratory failure and dyspnea may be exacerbated by heart failure, pulmonary embolism, and anxiety; by medication effects; and by other conditions, including deconditioning and malnutrition. Randomized controlled trials, which provide the strongest evidence for guideline recommendations, may underestimate the risk of adverse effects of interventions for older patients with COPD. The focus of guidelines on disease-modifying therapies may not address the full spectrum of patient and caregiver needs, particularly the high rates of bothersome symptoms, risk of functional and cognitive decline, and need for end-of-life care planning. Meeting the many needs of older patients with COPD and their families requires that clinicians supplement guideline-recommended care with treatment decision making that takes into account older persons' comorbid conditions, recognizes the trade-offs engendered by the increased risk of adverse events, focuses on symptom relief and function, and prepares patients and their loved ones for further declines in the patient's health and their end-of-life care. A case of COPD in an 81-year-old man hospitalized with severe dyspnea and respiratory failure highlights both the challenges in managing COPD in the elderly and the limitations in applying guidelines to geriatric patients.