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1.
Oncologist ; 22(12): 1528-1534, 2017 12.
Artículo en Inglés | MEDLINE | ID: mdl-28894017

RESUMEN

BACKGROUND: The family and friends (caregivers) of patients with advanced cancer often experience tremendous distress. Although early integrated palliative care (PC) has been shown to improve patient-reported quality of life (QOL) and mood, its effects on caregivers' outcomes is currently unknown. MATERIALS AND METHODS: We conducted a randomized trial of early PC integrated with oncology care versus oncology care alone for patients who were newly diagnosed with incurable lung and noncolorectal gastrointestinal cancers and their caregivers. The early PC intervention focused on addressing the needs of both patients and their caregivers. Eligible caregivers were family or friends who would likely accompany patients to clinic visits. The intervention entailed at least monthly patient visits with PC from the time of diagnosis. Caregivers were encouraged, but not required, to attend the palliative care visits. We used the Hospital Anxiety and Depression Scale (HADS) and Medical Health Outcomes Survey Short-Form to assess caregiver mood and QOL. RESULTS: Two hundred seventy-five caregivers (intervention n = 137; control n = 138) of the 350 patients participated. The intervention led to improvement in caregivers' total distress (HADS-total adjusted mean difference = -1.45, 95% confidence interval [CI] -2.76 to -0.15, p = .029), depression subscale (HADS-depression adjusted mean difference = -0.71, 95% CI -1.38 to -0.05, p = .036), but not anxiety subscale or QOL at week 12. There were no differences in caregivers' outcomes at week 24. A terminal decline analysis showed significant intervention effects on caregivers' total distress (HADS-total), with effects on both the anxiety and depression subscales at 3 and 6 months before patient death. CONCLUSION: Early involvement of PC for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. This work demonstrates that the benefits of early, integrated PC models in oncology care extend beyond patient outcomes and positively impact the experience of caregivers. IMPLICATIONS FOR PRACTICE: Early involvement of palliative care for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. The findings of this trial demonstrate that the benefits of the early, integrated palliative care model in oncology care extend beyond patient outcomes and positively impact the experience of caregivers. These findings contribute novel data to the growing evidence base supporting the benefits of integrating palliative care earlier in the course of disease for patients with advanced cancer and their caregivers.


Asunto(s)
Cuidadores/psicología , Neoplasias Gastrointestinales/psicología , Neoplasias Pulmonares/psicología , Pacientes/psicología , Depresión/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/psicología , Calidad de Vida
2.
Qual Life Res ; 26(2): 259-271, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-27469506

RESUMEN

PURPOSE: To evaluate how well three different patient-reported outcomes (PROs) measure individual change. METHODS: Two hundred and fourteen patients (from two sites) initiating first or new chemotherapy for any stage of breast or gastrointestinal cancer participated. The 13-item FACIT Fatigue scale, a 7-item PROMIS® Fatigue Short Form (PROMIS 7a), and the PROMIS® Fatigue computer adaptive test (CAT) were administered monthly online for 6 months. Reliability of measured change was defined, under a population mixed effects model, as the ratio of estimated systematic variance in rate of change to the estimated total variance of measured individual differences in rate of change. Precision of individual measured change, the standard error of measurement of change, was given by the square root of the rate-of-change sampling variance. Linear and quadratic models were examined up to 3 and up to 6 months. RESULTS: A linear model for measured change showed the following by 6 and 3 months, respectively: PROMIS CAT (0.363 and 0.342); PROMIS SF (0.408 and 0.533); FACIT (0.459 and 0.473). Quadratic models offered no noteworthy improvement over linear models. Both reliability and precision results demonstrate the need to improve the measurement of intra-individual change. CONCLUSIONS: These results illustrate the challenge of reliably measuring individual change in fatigue with a level of confidence required for intervention. Optimizing clinically useful measurement of intra-individual differences over time continues to pose a challenge for PROs.


Asunto(s)
Fatiga/psicología , Neoplasias/complicaciones , Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Femenino , Humanos , Persona de Mediana Edad , Encuestas y Cuestionarios
4.
N Engl J Med ; 368(15): 1417-24, 2013 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-23574120

RESUMEN

BACKGROUND: The majority of Death with Dignity participants in Washington State and Oregon have received a diagnosis of terminal cancer. As more states consider legislation regarding physician-assisted death, the experience of a comprehensive cancer center may be informative. METHODS: We describe the implementation of a Death with Dignity program at Seattle Cancer Care Alliance, the site of care for the Fred Hutchinson-University of Washington Cancer Consortium, a comprehensive cancer center in Seattle that serves the Pacific Northwest. Institution-level data were compared with publicly available statewide data from Oregon and Washington. RESULTS: A total of 114 patients inquired about our Death with Dignity program between March 5, 2009, and December 31, 2011. Of these, 44 (38.6%) did not pursue the program, and 30 (26.3%) initiated the process but either elected not to continue or died before completion. Of the 40 participants who, after counseling and upon request, received a prescription for a lethal dose of secobarbital (35.1% of the 114 patients who inquired about the program), all died, 24 after medication ingestion (60% of those obtaining prescriptions). The participants at our center accounted for 15.7% of all participants in the Death with Dignity program in Washington (255 persons) and were typically white, male, and well educated. The most common reasons for participation were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%), and loss of dignity (75.0%). Eleven participants lived for more than 6 months after prescription receipt. Qualitatively, patients and families were grateful to receive the lethal prescription, whether it was used or not. CONCLUSIONS: Overall, our Death with Dignity program has been well accepted by patients and clinicians.


Asunto(s)
Instituciones Oncológicas/organización & administración , Derecho a Morir , Suicidio Asistido/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Actitud Frente a la Muerte , Femenino , Humanos , Masculino , Persona de Mediana Edad , Oregon , Política Organizacional , Autonomía Personal , Suicidio Asistido/legislación & jurisprudencia , Washingtón , Adulto Joven
5.
Neurocrit Care ; 25(2): 266-72, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27230967

RESUMEN

BACKGROUND: Integration of palliative care (PC) into the neurological intensive care unit (neuro-ICU) is increasingly recommended, but evidence regarding the best practice is lacking. We conducted a qualitative analysis exploring current practices and key themes of specialist PC consultations in patients admitted to a single neuro-ICU. METHODS: We retrospectively identified all patients who were admitted to the neuro-ICU for ≥24 h and received a PC consultation between January and August 2014. We reviewed PC consultation notes and neuro-ICU progress notes from the electronic health records of these patients. We performed content analysis on the PC notes. RESULTS: Twenty-five neuro-ICU patients (4 %) received a PC consultation over 8 months with the most prevalent reason of clarifying goals of care. The main distinctions between patients with and those without (n = 580) a PC consultation were ICU length of stay (median 8.2 vs. 2.8 days) and death in the neuro-ICU (56 % vs. 11 %). The most prevalent themes addressed in the PC consultation notes were (1) discussing prognosis, (2) eliciting patient and family values, (3) understanding medical options, and (4) identifying conflict. CONCLUSIONS: PC consultations in the neuro-ICU emphasize family coping and decision-making by helping discuss prognosis and exploring patient and family values as well as their ability to understand the medical information. Several features suggest that earlier integration of PC into neuro-ICU care may enhance both coping and the decision-making process.


Asunto(s)
Lesiones Traumáticas del Encéfalo/terapia , Cuidados Críticos/métodos , Cuidados Paliativos/métodos , Derivación y Consulta , Accidente Cerebrovascular/terapia , Adulto , Anciano , Anciano de 80 o más Años , Cuidados Críticos/normas , Femenino , Humanos , Unidades de Cuidados Intensivos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/normas , Investigación Cualitativa , Derivación y Consulta/normas , Estudios Retrospectivos
7.
J Palliat Med ; 27(3): 405-410, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37738320

RESUMEN

When speaking to public audiences, palliative care advocates often reach for personal experiences of great meaning and significance in their own lives, and often distill those experiences to a key message. However, this approach may not be the most effective way to engage a public audience whose closest experience with palliative care is based on social media or third-hand stories. Research demonstrates that the lay public often starts with inaccurate assumptions about palliative care, including that it is only for people at end of life. These misunderstandings can lead people with serious illness to decline palliative care services that are backed by evidence and demonstrate real benefit. This phenomenon of "declines based on inaccurate assumptions" is widely seen in clinical practice and palliative care demonstration projects. Public messaging is an evidence-based approach to engage more effectively with the public when doing outreach for palliative care. The 10 tips provided are based on a multiyear and multiorganizational project focused on improving the messaging of palliative care for the public. As palliative care services are increasingly expanded and integrated into health systems, public messaging can provide a new approach for building partnerships with the public by offering messages that consistently meet their needs based on their current perceptions. Incorporating public-informed messaging strategies could enable palliative care clinicians and advocates to address the lay public with greater confidence and clarity about how palliative care can serve them, their families, and their communities.


Asunto(s)
Muerte , Cuidados Paliativos , Humanos
9.
Crit Care Med ; 41(6): 1405-11, 2013 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-23518869

RESUMEN

OBJECTIVES: Although studies have shown regional and interhospital variability in the intensity of end-of-life care, few data are available assessing variability in specific aspects of palliative care in the ICU across hospitals or interhospital variability in family and nurse ratings of this care. Recently, relatively high family satisfaction with ICU end-of-life care has prompted speculation that ICU palliative care has improved over time, but temporal trends have not been documented. DESIGN/SETTING: Retrospective cohort study of consecutive patients dying in the ICU in 13 Seattle-Tacoma-area hospitals between 2003 and 2008. MEASUREMENTS: We examined variability over time and among hospitals in satisfaction and quality of dying assessed by family, quality of dying assessed by nurses, and chart-based indicators of palliative care. We used regression analyses adjusting for patient, family, and nurse characteristics. MAIN RESULTS: Medical charts were abstracted for 3,065 of 3,246 eligible patients over a 55-month period. There were significant differences between hospitals for all chart-based indicators (p < 0.001), family satisfaction (p < 0.001), family-rated quality of dying (p = 0.03), and nurse-rated quality of dying (p = 0.003). There were few significant changes in these measures over time, although we found a significant increase in pain assessments in the last 24 hours of life (p < 0.001) as well as decreased documentation of family conferences (p < 0.001) and discussion of prognosis (p = 0.020) in the first 72 hours in the ICU. CONCLUSIONS: We found significant interhospital variation in ratings and delivery of palliative care, consistent with prior studies showing variation in intensity of care at the end of life. We did not find evidence of temporal changes in most aspects of palliative care, family satisfaction, or nurse/family ratings of the quality of dying. With the possible exception of pain assessment, there is little evidence that the quality of palliative care has improved over the time period studied.


Asunto(s)
Familia , Administración Hospitalaria/tendencias , Unidades de Cuidados Intensivos/organización & administración , Cuidados Paliativos/organización & administración , Cuidado Terminal/organización & administración , Anciano , Anciano de 80 o más Años , Comportamiento del Consumidor , Femenino , Humanos , Unidades de Cuidados Intensivos/tendencias , Masculino , Persona de Mediana Edad , Personal de Enfermería en Hospital/organización & administración , Personal de Enfermería en Hospital/tendencias , Cuidados Paliativos/tendencias , Calidad de la Atención de Salud/organización & administración , Calidad de la Atención de Salud/tendencias , Ensayos Clínicos Controlados Aleatorios como Asunto , Estudios Retrospectivos , Servicio Social/organización & administración , Servicio Social/tendencias , Cuidado Terminal/tendencias , Factores de Tiempo , Washingtón
10.
BMC Cancer ; 13: 188, 2013 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-23570278

RESUMEN

BACKGROUND: Communication about prognosis and treatment choices is essential for informed decision making in advanced cancer. This article describes an investigation designed to facilitate communication and decision making among oncologists, patients with advanced cancer, and their caregivers. METHODS/DESIGN: The Values and Options in Cancer Care (VOICE) Study is a National Cancer Institute sponsored randomized controlled trial conducted in the Rochester/Buffalo, NY and Sacramento, CA regions. A total of 40 oncologists, approximately 400 patients with advanced cancer, and their family/friend caregivers (one per patient, when available) are expected to enroll in the study. Drawing upon ecological theory, the intervention uses a two-pronged approach: oncologists complete a multifaceted tailored educational intervention involving standardized patient instructors (SPIs), and patients and caregivers complete a coaching intervention to facilitate prioritizing and discussing questions and concerns. Follow-up data will be collected approximately quarterly for up to three years. DISCUSSION: The intervention is hypothesized to enhance patient-centered communication, quality of care, and patient outcomes. Analyses will examine the effects of the intervention on key elements of physician-patient-caregiver communication (primary outcomes), the physician-patient relationship, shared understanding of prognosis, patient well-being, and health service utilization (secondary outcomes). TRIAL REGISTRATION: Clinical Trials Identifier: NCT01485627.


Asunto(s)
Cuidadores , Comunicación , Toma de Decisiones , Neoplasias/terapia , Educación del Paciente como Asunto , Médicos , Humanos , Cuidados Paliativos , Relaciones Médico-Paciente , Relaciones Profesional-Familia , Calidad de Vida , Proyectos de Investigación , Cuidado Terminal
11.
Palliat Med ; 27(3): 236-43, 2013 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-22711714

RESUMEN

BACKGROUND: We developed a novel individualised training program regarding end-of-life communication, designed to be time effective for busy junior-doctors working in hospital settings. AIM: We aimed to pilot this brief individualised training program with junior-doctors to explore its acceptability, feasibility and effect on the doctors' confidence, communication skills, attitudes towards psychosocial care and burnout. DESIGN: The content of the training intervention was informed by a systematic literature review and evidence-based clinical practice guidelines regarding end-of-life communication. The intervention was based on sound educational principles and involved three one-hour teaching sessions over a three-week period, including two individual sessions with an expert facilitator and simulated patient/caregiver. In addition, participants received written and audiovisual take-home learning materials. PARTICIPANTS were videotaped consulting with a simulated patient/caregiver pre/post training to assess the impact of the course on their communication behaviours. PARTICIPANTS completed de-identified questionnaires pre/post training, including self-assessed confidence, attitudes to psychosocial care, and the Maslach Burnout inventory. PARTICIPANTS: PARTICIPANTS included 22 junior-doctors from a large teaching hospital in Sydney, Australia. RESULTS: All participants reported that the training was useful, had been helpful for their communication with patients and that they would recommend the training to others. Significant improvements were found in participants' communication skills (in seven out of 21 specific and all three global communication behaviours assessed, range P=0.02 to <0.001), confidence in communicating about relevant topics (P<0.001), attitudes towards psychosocial care (P=0.03) and sense of personal accomplishment (P=0.043). There were no overall differences in participants' burnout levels. CONCLUSION: This intervention shows promise and warrants further formal evaluation.


Asunto(s)
Comunicación , Educación de Postgrado en Medicina/métodos , Relaciones Médico-Paciente , Cuidado Terminal , Adulto , Agotamiento Profesional , Comportamiento del Consumidor , Estudios de Factibilidad , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Competencia Profesional , Autoeficacia , Adulto Joven
12.
JAMA ; 310(21): 2271-81, 2013 Dec 04.
Artículo en Inglés | MEDLINE | ID: mdl-24302090

RESUMEN

IMPORTANCE: Communication about end-of-life care is a core clinical skill. Simulation-based training improves skill acquisition, but effects on patient-reported outcomes are unknown. OBJECTIVE: To assess the effects of a communication skills intervention for internal medicine and nurse practitioner trainees on patient- and family-reported outcomes. DESIGN, SETTING, AND PARTICIPANTS: Randomized trial conducted with 391 internal medicine and 81 nurse practitioner trainees between 2007 and 2013 at the University of Washington and Medical University of South Carolina. INTERVENTION: Participants were randomized to an 8-session, simulation-based, communication skills intervention (N = 232) or usual education (N = 240). MAIN OUTCOMES AND MEASURES: Primary outcome was patient-reported quality of communication (QOC; mean rating of 17 items rated from 0-10, with 0 = poor and 10 = perfect). Secondary outcomes were patient-reported quality of end-of-life care (QEOLC; mean rating of 26 items rated from 0-10) and depressive symptoms (assessed using the 8-item Personal Health Questionnaire [PHQ-8]; range, 0-24, higher scores worse) and family-reported QOC and QEOLC. Analyses were clustered by trainee. RESULTS: There were 1866 patient ratings (44% response) and 936 family ratings (68% response). The intervention was not associated with significant changes in QOC or QEOLC. Mean values for postintervention patient QOC and QEOLC were 6.5 (95% CI, 6.2 to 6.8) and 8.3 (95% CI, 8.1 to 8.5) respectively, compared with 6.3 (95% CI, 6.2 to 6.5) and 8.3 (95% CI, 8.1 to 8.4) for control conditions. After adjustment, comparing intervention with control, there was no significant difference in the QOC score for patients (difference, 0.4 points [95% CI, -0.1 to 0.9]; P = .15) or families (difference, 0.1 [95% CI, -0.8 to 1.0]; P = .81). There was no significant difference in QEOLC score for patients (difference, 0.3 points [95% CI, -0.3 to 0.8]; P = .34) or families (difference, 0.1 [95% CI, -0.7 to 0.8]; P = .88). The intervention was associated with significantly increased depression scores among patients of postintervention trainees (mean score, 10.0 [95% CI, 9.1 to 10.8], compared with 8.8 [95% CI, 8.4 to 9.2]) for control conditions; adjusted model showed an intervention effect of 2.2 (95% CI, 0.6 to 3.8; P = .006). CONCLUSIONS AND RELEVANCE: Among internal medicine and nurse practitioner trainees, simulation-based communication training compared with usual education did not improve quality of communication about end-of-life care or quality of end-of-life care but was associated with a small increase in patients' depressive symptoms. These findings raise questions about skills transfer from simulation training to actual patient care and the adequacy of communication skills assessment. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00687349.


Asunto(s)
Comunicación , Medicina Interna/educación , Internado y Residencia , Enfermeras Practicantes/educación , Atención al Paciente/normas , Calidad de la Atención de Salud , Cuidado Terminal/normas , Adulto , Competencia Clínica , Depresión , Educación , Humanos , Satisfacción del Paciente , Pacientes/psicología , Relaciones Médico-Paciente , Autoinforme , Adulto Joven
13.
J Palliat Med ; 26(6): 751-756, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37126403

RESUMEN

Many patients who could benefit from Palliative Care do not receive services because of lack of awareness or misconceptions. This high level of public unfamiliarity combined with inaccurate beliefs equating Palliative Care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. A barrier to widespread public messaging, however, is the scarcity of messages developed with empirical research in public perceptions of the lived experience of receiving palliative care. In this report, we describe qualitative research aimed at identifying the "deep metaphors" associated with palliative care, to provide an empirical foundation for further creative work. We interviewed 8 patients receiving palliative care and 8 caregivers using a qualitative method, Zaltman Metaphor Elicitation Technique, that is specially designed to reveal unconscious metaphors and socially shared associations that participants held about experiencing palliative care. Study participants likened the onset of serious illness as a massive disruption resulting in stunning losses with far-reaching consequences. What serious illness "took away" from them was a sense of certainty about where their lives were going, and these participants described experiencing (1) shame and embarrassment about what was happening to them; (2) a sense that no one was listening to them; (3) feeling lost and uncertain about what to do, feeling stuck; and (4) losing parts of their identity to illness. What they felt in need of, to counter what had been taken away, was (1) validation for what they were going through; (2) agency to determine their own quality of life and have input into their care; (3) guidance to access a network of resources; and (4) regeneration of their self-worth, resulting in a new version of their identity. This research provides guidance for message developers on frames, language, and visuals for future campaigns designed to create public interest in palliative care.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Metáfora , Calidad de Vida , Cuidadores , Investigación Cualitativa
14.
JCO Oncol Pract ; 19(8): 669-675, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37327462

RESUMEN

PURPOSE: The COVID-19 pandemic has had deleterious effects on oncologist professional and personal well-being, the optimal delivery of quality cancer care, and the future cancer care workforce, with many departing the field. Hence, the identification of evidence-based approaches to sustain oncologists is essential to promote well-being. MATERIALS AND METHODS: We developed a brief, oncologist-centered, virtual group peer support program and tested its feasibility, acceptability, and preliminary impact on well-being. Trained facilitators provided support to peers on the basis of burnout research in oncology with available resources to enhance oncologist resilience. Peers completed pre- and postsurvey assessment of well-being and satisfaction. RESULTS: From April to May 2022, 11 of 15 (73%) oncologists participated in its entirety: mean age 51.1 years (range, 33-70), 55% female, 81.8% Ca, 82% medical oncologists, 63.6% trained ≥15 years, average 30.3 patients/wk (range, 5-60), and 90.9% employed in hospital/health system practice. There was a statistically significant difference in pre- and postintervention well-being (7.0 ± 3.6 v 8.2 ± 3.0, P = .03) with high satisfaction with postgroup experience (9.1 ± 2.5). These quantitative improvements were affirmed by qualitative feedback. These themes included (1) an enhanced understanding of burnout in oncology, (2) shared experience in practice of oncology, and (3) fostering connections with diverse colleagues. Future recommendations proposed included (1) restructuring group format and (2) tailoring groups according to practice setting (academic v community). CONCLUSION: Preliminary results suggest that a brief, innovative oncologist-tailored group peer support program is feasible, acceptable, and beneficial for enhancing well-being dimensions including burnout, engagement, and satisfaction. Additional study is required to refine program components (optimal timing, format) to support oncologist well-being, now during the pandemic and well into recovery.


Asunto(s)
Agotamiento Profesional , COVID-19 , Oncólogos , Humanos , Femenino , Persona de Mediana Edad , Masculino , COVID-19/epidemiología , Pandemias , Estudios de Factibilidad , Oncología Médica , Agotamiento Profesional/terapia
15.
Psychooncology ; 21(3): 297-306, 2012 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-21294221

RESUMEN

PURPOSE: Little is known about communication with patients suffering from hematologic malignancies, many of whom are seen by subspecialists in consultation at tertiary-care centers. These subspecialized consultations might provide the best examples of optimal physician-patient communication behaviors, given that these consultations tend to be lengthy, to occur between individuals who have not met before and may have no intention of an ongoing relationship, and which have a goal of providing treatment recommendations. The aim of this paper is to describe and quantify the content of the subspecialty consultation in regards to exchanging information and identify patient and provider characteristics associated with discussion elements. METHODS: Audio-recorded consultations between 236 patients and 40 hematologists were coded for recommended communication practices. Multilevel models for dichotomous outcomes were created to test associations between patient, physician and consultation characteristics and key discussion elements. RESULTS: Discussions about the purpose of the visit and patient's knowledge about their disease were common. Other elements such as patient's preference for his/her role in decision-making, preferences for information, or understanding of presented information were less common. Treatment recommendations were provided in 97% of the consultations and unambiguous presentations of prognosis occurred in 81% of the consultations. Unambiguous presentations of prognosis were associated with non-White patient race, lower educational status, greater number of questions asked, and specific physician provider. CONCLUSION: Although some communication behaviors occur in most consultations, others are much less common and could help tailor the amount and type of information discussed. Approximately half of the patients are told unambiguous prognostic estimates for mortality or cure.


Asunto(s)
Comunicación , Neoplasias Hematológicas/psicología , Oncología Médica/métodos , Participación del Paciente , Relaciones Médico-Paciente , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Médicos
16.
Am J Respir Crit Care Med ; 183(3): 348-55, 2011 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-20833820

RESUMEN

RATIONALE: Because of high mortality, end-of-life care is an important component of intensive care. OBJECTIVES: We evaluated the effectiveness of a quality-improvement intervention to improve intensive care unit (ICU) end-of-life care. METHODS: We conducted a cluster-randomized trial randomizing 12 hospitals. The intervention targeted clinicians with five components: clinician education, local champions, academic detailing, clinician feedback of quality data, and system supports. Outcomes were assessed for patients dying in the ICU or within 30 hours of ICU discharge using surveys and medical record review. Families completed Quality of Dying and Death (QODD) and satisfaction surveys. Nurses completed the QODD. Data were collected during baseline and follow-up at each hospital (May 2004 to February 2008). We used robust regression models to test for intervention effects, controlling for site, patient, family, and nurse characteristics. MEASUREMENTS AND MAIN RESULTS: All hospitals completed the trial with 2,318 eligible patients and target sample sizes obtained for family and nurse surveys. The primary outcome, family-QODD, showed no change with the intervention (P = 0.33). There was no change in family satisfaction (P = 0.66) or nurse-QODD (P = 0.81). There was a nonsignificant increase in ICU days before death after the intervention (hazard ratio = 0.9; P = 0.07). Among patients undergoing withdrawal of mechanical ventilation, there was no change in time from admission to withdrawal (hazard ratio = 1.0; P = 0.81). CONCLUSIONS: We found this intervention was associated with no improvement in quality of dying and no change in ICU length of stay before death or time from ICU admission to withdrawal of life-sustaining measures. Improving ICU end-of-life care will require interventions with more direct contact with patients and families. Clinical trial registered with www.clinicaltrials.gov (NCT00685893).


Asunto(s)
Unidades de Cuidados Intensivos , Mejoramiento de la Calidad , Cuidado Terminal/métodos , Anciano , Comportamiento del Consumidor , Familia , Femenino , Humanos , Unidades de Cuidados Intensivos/normas , Masculino , Persona de Mediana Edad , Personal de Enfermería en Hospital , Evaluación de Resultado en la Atención de Salud , Grupo de Atención al Paciente/normas , Calidad de la Atención de Salud/normas , Encuestas y Cuestionarios , Cuidado Terminal/estadística & datos numéricos
17.
J Palliat Med ; 25(8): 1273-1281, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35285721

RESUMEN

Psychedelic-assisted therapy (PAT) is a burgeoning treatment with growing interest across a variety of settings and disciplines. Empirical evidence supports PAT as a novel therapeutic approach that provides safe and effective treatment for people suffering from a variety of diagnoses, including treatment-resistant depression, substance use disorder, and post-traumatic stress disorder. Within the palliative care (PC) field, one-time PAT dosing may lead to sustained reductions in anxiety, depression, and demoralization-symptoms that diminish the quality of life in both seriously ill patients and those at end of life. Despite a well-noted psychedelic renaissance in scholarship and a renewed public interest in the utilization of these medicines, serious illness-specific content to guide PAT applications in hospice and PC clinical settings has been limited. This article offers 10 evidence-informed tips for PC clinicians synthesized through consultation with interdisciplinary and international leading experts in the field with aims to: (1) familiarize PC clinicians and teams with PAT; (2) identify the unique challenges pertaining to this intervention given the current legalities and logistical barriers; (3) discuss therapeutic competencies and considerations for current and future PAT use in PC; and (4) highlight critical approaches to optimize the safety and potential benefits of PAT among patients with serious illness and their caregivers.


Asunto(s)
Alucinógenos , Enfermería de Cuidados Paliativos al Final de la Vida , Ansiedad , Humanos , Cuidados Paliativos , Calidad de Vida
18.
J Pain Symptom Manage ; 63(6): e621-e632, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35595375

RESUMEN

CONTEXT: Outcomes after cardiopulmonary resuscitation (CPR) remain poor. We have spent 10 years investigating an "informed assent" (IA) approach to discussing CPR with chronically ill patients/families. IA is a discussion framework whereby patients extremely unlikely to benefit from CPR are informed that unless they disagree, CPR will not be performed because it will not help achieve their goals, thus removing the burden of decision-making from the patient/family, while they retain an opportunity to disagree. OBJECTIVES: Determine the acceptability and efficacy of IA discussions about CPR with older chronically ill patients/families. METHODS: This multi-site research occurred in three stages. Stage I determined acceptability of the intervention through focus groups of patients with advanced COPD or malignancy, family members, and physicians. Stage II was an ambulatory pilot randomized controlled trial (RCT) of the IA discussion. Stage III is an ongoing phase 2 RCT of IA versus attention control in in patients with advanced chronic illness. RESULTS: Our qualitative work found the IA approach was acceptable to most patients, families, and physicians. The pilot RCT demonstrated feasibility and showed an increase in participants in the intervention group changing from "full code" to "do not resuscitate" within two weeks after the intervention. However, Stages I and II found that IA is best suited to inpatients. Our phase 2 RCT in older hospitalized seriously ill patients is ongoing; results are pending. CONCLUSIONS: IA is a feasible and reasonable approach to CPR discussions in selected patient populations.


Asunto(s)
Reanimación Cardiopulmonar , Toma de Decisiones , Anciano , Enfermedad Crítica , Hospitalización , Humanos , Pacientes Internos , Órdenes de Resucitación
19.
Oncologist ; 16(3): 342-50, 2011.
Artículo en Inglés | MEDLINE | ID: mdl-21349951

RESUMEN

PURPOSE: Recommendations for communicating bad or serious news are based on limited evidence. This study was designed to understand patient perspectives on what patients value when oncologists communicate news of cancer recurrence. STUDY DESIGN AND METHODS: Participants were 23 patients treated for a gastrointestinal cancer at a tertiary U.S. cancer center within the past 2 years, who had semistructured qualitative interviews in which they listened to audio recordings of an oncology fellow discussing news of cancer recurrence with a standardized patient. Participants paused the audio recording to comment on what they liked or disliked about the oncologist's communication. RESULT: Three themes were identified that refine existing approaches to discussing serious news. The first theme, recognition, described how the oncologist responded to the gravity of the news of cancer recurrence for the patient. Participants saw the need for recognition throughout the encounter and not just after the news was given. The second theme, guiding, describes what participants wanted after hearing the news, which was for the oncologist to draw on her biomedical expertise to frame the news and plan next steps. The third theme, responsiveness, referred to the oncologist's ability to sense the need for recognition or guidance and to move fluidly between them. CONCLUSION: This study suggests that oncologists giving news of cancer recurrence could think of the communication as going back and forth between recognition and guidance and could ask themselves: "Have I demonstrated that I recognize the patient's experience hearing the news?" and "Have I provided guidance to the next steps?"


Asunto(s)
Comunicación , Neoplasias Gastrointestinales/psicología , Oncología Médica/ética , Recurrencia Local de Neoplasia/psicología , Satisfacción del Paciente , Relaciones Médico-Paciente , Adulto , Anciano , Femenino , Neoplasias Gastrointestinales/terapia , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Revelación de la Verdad
20.
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