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1.
J Perinat Med ; 50(5): 519-527, 2022 Jun 27.
Artículo en Inglés | MEDLINE | ID: mdl-35092654

RESUMEN

The practice of maternal-fetal surgery (MFS) has expanded from lethal fetal conditions to conditions which are significantly disabling but not a lethal fetal abnormality. The inclusion of myelomeningocele within the scope of MFS in the 1990s sparked a renewed debate over the ethics of MFS. While demonstrating increasing efficacy and range of application, MFS continues to be ethically fraught due to the inherent tension between maternal and fetal interests. Ethical issues central to MFS include the patienthood of the fetus; the balance of risks and benefits between the woman and fetus; informed consent for experimental procedures; and determination of conditions that meet ethical qualifications for MFS intervention. These concerns are likely to persist and evolve as perinatal medicine continues to advance. Here we summarize the current state of MFS ethics, highlighting the major positions in the literature thus far as well as examine future directions. It is essential robust discussions of these important issues continue both to ensure ethical medical practice and to provide support to clinicians, pregnant women, and their families.


Asunto(s)
Enfermedades Fetales , Terapias Fetales , Ética Médica , Femenino , Enfermedades Fetales/cirugía , Feto/cirugía , Humanos , Embarazo , Mujeres Embarazadas
2.
J Psychosoc Oncol ; 40(6): 854-867, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34842060

RESUMEN

BACKGROUND: Cancer caregiving can negatively impact the quality of life (QOL) of the caregiver. In-person interventions for improving coping skills have been shown to be effective in improving QOL for caregivers. OBJECTIVES: This pilot project explored the feasibility and acceptability of a virtual group therapy intervention to improve short-term cancer caregiver QOL. METHODS: Caregivers of cancer patients were enrolled in a structured multidisciplinary intervention of eight virtual group therapy sessions provided over four weeks between September 9, 2013 and November 17, 2014. Group sessions were led by trained facilitators and included components of physical therapy, occupational therapy, psychosocial education, cognitive-behavioral intervention, supportive discussion, spiritual reflection, and mindfulness therapy. Feasibility was based on acceptable number of recruited participants per session; acceptability was defined using attendance and 80% QOL completion rates. QOL domains and symptom burden were assessed using validated single items. RESULTS: The 20 cancer caregivers who enrolled were mostly older (80% were ≥ 65 years), female (76.5%), married to the patient (88.2%), Caucasian (100%), and highly educated (100%). 60% attended one to five sessions, 15% attended six to eight sessions, and 25% attended no sessions. Thirty percent completed pre- and post- intervention ratings of QOL items. SIGNIFICANCE OF RESULTS: Findings suggested that a virtual group therapy intervention is feasible for the cancer caregivers in this study. Although not statistically significant, the caregivers reported higher QOL and less symptom burden in multiple domains after participating in the virtual group therapy intervention.


Asunto(s)
Neoplasias , Psicoterapia de Grupo , Humanos , Femenino , Cuidadores/psicología , Calidad de Vida/psicología , Estudios de Factibilidad , Proyectos Piloto , Neoplasias/terapia , Neoplasias/psicología
3.
Am J Hosp Palliat Care ; : 10499091241237991, 2024 Mar 19.
Artículo en Inglés | MEDLINE | ID: mdl-38501668

RESUMEN

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3 weeks, 3-4 MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

4.
J Pain Symptom Manage ; 65(5): e417-e423, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36682675

RESUMEN

BACKGROUND: Music therapy (MT) can relieve distressing end-of-life symptoms, but little is known regarding its effect on caregivers who are at risk for emotional distress as their loved ones approach death. MEASURES: Quality of life (Linear Analogue Self-Assessment), depressive and anxiety symptoms (Patient Health Questionnaire for Depression and Anxiety), and stress (Role Overload Measure) pre-MT, post-MT and at 6-month follow-up, as well as a satisfaction survey post-MT. INTERVENTION: Single MT session for 20-45 minutes OUTCOMES: 15/20 completed MT intervention, 14 also completed pre-MT and post-MT assessments, and 9 completed assessments at all 3 timepoints. Post-MT satisfaction survey (n=14) showed 100% of caregivers were very satisfied with MT and would recommend to others, and found MT very effective for emotional support (85.7%), stress relief (78.6%), spiritual support (71.4%), general feeling of wellness (71.4%), relaxation (69.2%), and pain relief (33.3%). CONCLUSIONS: Research on MT is feasible for caregivers of inpatient hospice patients. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03322228.


Asunto(s)
Cuidadores , Musicoterapia , Humanos , Cuidadores/psicología , Calidad de Vida/psicología , Estudios de Factibilidad , Muerte
5.
J Palliat Care ; 37(1): 41-47, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-33213233

RESUMEN

Evidence for massage therapy (MT) in hospice patients remains limited. We conducted a prospective pilot study on MTs impact on quality of life of hospice patients and caregivers. Patient-caregiver dyads were enrolled if patients scored ≥5 on pain, depression, anxiety, or well-being using the revised Edmonton Symptom Assessment System Revised (ESAS-r). The patient received MT weekly for up to 3 massages with assessments completed at baseline, after each massage, and 1 week after the final massage for patients and at baseline and 1 week after final massage for caregivers. A satisfaction survey was completed at study completion. A pro-rated area under the curve (AUC) was utilized to assess the primary endpoints of change in ESAS-r for patient ratings of pain, depression and anxiety as well as the Linear Analogue Self-Assessment (LASA). Median difference scores (end of study value)-(baseline value) for each participant and caregiver were calculated. Of 27 patients and caregivers enrolled, 25 patients received MT. Fifteen patients completed all 3 MT sessions and were given the final symptom assessment and satisfaction survey and their caregivers completed final assessments. The proportion of patients considered success (AUC > baseline) in the primary endpoints were the following: pain 40.9%, depression 40.9%, anxiety 54.5%, LASA 54.5%. Median difference scores were largely zero indicating no significant temporal change in symptoms. Patients were highly satisfied with MT. This pilot study indicated that MT was a feasible and well-received intervention in our population of patients with inadequately controlled symptoms.


Asunto(s)
Hospitales para Enfermos Terminales , Neoplasias , Cuidadores , Humanos , Masaje , Proyectos Piloto , Estudios Prospectivos , Calidad de Vida
6.
J Matern Fetal Neonatal Med ; 34(8): 1312-1317, 2021 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-31189438

RESUMEN

BACKGROUND: Recent evidence suggests prenatal fetoscopic tracheal occlusion (FETO) may improve the survival and long-term morbidity of neonates with congenital diaphragmatic hernia, yet little guidance exists in the medical literature as to the ethical permissibility of performing a maternal-fetal surgical intervention in a twin pregnancy discordant for a structural abnormality. CASE: Here, we present a case of a twin pregnancy with an unaffected twin (Twin A) and a twin diagnosed with severe congenital diaphragmatic hernia (Twin B). A proposed fetoscopic tracheal occlusion (FETO) procedure may improve the likelihood of survival and postnatal outcome of Twin B; however, balloon placement may also initiate very preterm birth at 28 weeks of gestation. The Fetal Ethics Advisory Board was asked to provide guidance on the permissibility of FETO in this pregnancy. DISCUSSION: A literature review identified one brief mention of FETO in a 34-week dichorionic twin pregnancy in the medical literature, which resulted in the rupture of fetal membranes in the sac of the nonsurgical twin. Only one paper specifically addressed the question of whether it would be ethically permissible to subject a healthy twin to the risks of maternal-fetal surgery for the benefit of a compromised twin, finding that any risk to the unaffected twin would be an ethical contraindication. We offer our own analysis of moral weight and risk/benefit considerations of this proposed intervention, and present our findings on the circumstances in which it may be ethically permissible to perform a maternal-fetal intervention in a twin pregnancy. CONCLUSION: While FETO was not ethically advisable in this pregnancy, we find that in limited circumstances, certain maternal-fetal surgical interventions may be ethically permissible in a twin pregnancy discordant for a structural abnormality if the risks to the unaffected twin are minimal and the procedure would improve the likelihood of survival and postnatal outcome of a critically compromised co-twin.


Asunto(s)
Oclusión con Balón , Hernias Diafragmáticas Congénitas , Nacimiento Prematuro , Femenino , Fetoscopía , Hernias Diafragmáticas Congénitas/cirugía , Humanos , Recién Nacido , Principios Morales , Embarazo , Embarazo Gemelar , Tráquea
7.
Hosp Pract (1995) ; 48(sup1): 37-47, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31825689

RESUMEN

Take-Away Points:1. Geriatric palliative care requires integrating the disciplines of hospital medicine and palliative care in pursuit of delivering comprehensive, whole-person care to aging patients with serious illnesses.2. Older adults have unique palliative care needs compared to the general population, different prevalence and intensity of symptoms, more frequent neuropsychiatric challenges, increased social needs, distinct spiritual, religious, and cultural considerations, and complex medicolegal and ethical issues.3. Hospital-based palliative care interdisciplinary teams can take many forms and provide high-quality, goal-concordant care to older adults and their families.


Asunto(s)
Servicios de Salud para Ancianos/organización & administración , Hospitalización , Cuidados Paliativos/organización & administración , Anciano , Anciano de 80 o más Años , Envejecimiento , Características Culturales , Evaluación Geriátrica , Humanos , Relaciones Interprofesionales , Cuidados Paliativos/psicología , Grupo de Atención al Paciente/organización & administración , Religión
8.
BMJ Open ; 8(1): e015550, 2018 01 21.
Artículo en Inglés | MEDLINE | ID: mdl-29358415

RESUMEN

OBJECTIVE: Create a score to identify patients at risk of death or hospice placement who may benefit from goals of care discussion earlier in the hospitalisation. DESIGN: Retrospective cohort study to develop a risk index using multivariable logistic regression. SETTING: Two tertiary care hospitals in Southeastern Minnesota. PARTICIPANTS: 92 879 adult general care admissions (50% male, average age 60 years). PRIMARY AND SECONDARY OUTCOME MEASURES: Our outcome measure was an aggregate of inhospital death or discharge to hospice. Predictor variables for the model encompassed comorbidities, nutrition status, functional status, demographics, fall risk, mental status, Charlson Comorbidity Index and acuity of illness on admission. Resuscitation status, race, geographic area of residence and marital status were added as covariates to account for confounding. RESULTS: Inhospital mortality and discharge to hospice were rare, with incidences of 1.2% and 0.8%, respectively. The Hospital End-of-Life Prognostic Score (HELPS) demonstrated good discrimination (C-statistic=0.866 in derivation set and 0.834 in validation set). The patients with the highest 5% of scores had an 8% risk of the outcome measure, relative risk 12.9 (10.9-15.4) when compared to the bottom 95%. CONCLUSIONS: HELPS is able to identify patients with a high risk of inhospital death or need for hospice at discharge. These patients may benefit from early goals of care discussions.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Mortalidad Hospitalaria , Planificación de Atención al Paciente , Transferencia de Pacientes/estadística & datos numéricos , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Comorbilidad , Femenino , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Minnesota , Análisis Multivariante , Estudios Retrospectivos , Medición de Riesgo , Índice de Severidad de la Enfermedad , Adulto Joven
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