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1.
BMC Palliat Care ; 23(1): 118, 2024 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-38720316

RESUMEN

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendencias , Cuidados Paliativos/normas , Países Escandinavos y Nórdicos , Niño , Lactante , Preescolar , Adolescente , Recién Nacido , Necesidades y Demandas de Servicios de Salud/tendencias , Pediatría/métodos , Pediatría/tendencias
2.
BMC Palliat Care ; 23(1): 112, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38693518

RESUMEN

BACKGROUND: Despite a large burden of life-limitingillness, there exists a dearth of services of palliative care in Pakistan. International guidelines have questionable applicability in Pakistan due to the socioeconomic differences. We generated a protocol describing the process of developing comprehensive palliative care guidelines and palliative care referral pathways for primary care practitioners to adopt in Pakistan. METHODS: A GRADE-ADOLOPMENT approach with modification has been employed to create guidelines for a Pakistani context. The "National Comprehensive Cancer Network Guidelines Insights: Palliative Care, Version 2.2021" was used as the source guideline. Recommendations from the source guideline were reviewed by two local palliative care specialists to either "Adopt," "Adapt" or "Exclude". The finalized recommendations were incorporated into the local palliative care guideline. Clinical diagnosis and referral pathways were made from the finalized guideline. Any gaps in management found in the pathways were filled by taking existing recommendations from other credible guidelines. RESULTS: Twenty-seven recommendations were adopted without modification. No recommendations were deemed to be adapted and 15 were excluded. The referral care pathways created were reflective of the local guideline and included elements of initial assessment, preliminary management, reassessment, and referral. 6 additional recommendations were made. CONCLUSION: The described clinical practice guidelines and primary care clinical referral pathways will aid to standardize palliative care provision in Pakistan. These can be used by other resource constrained settings to develop guidelines within their own local context.


Asunto(s)
Cuidados Paliativos , Atención Primaria de Salud , Derivación y Consulta , Humanos , Pakistán , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Derivación y Consulta/normas , Atención Primaria de Salud/métodos , Atención Primaria de Salud/normas , Guías de Práctica Clínica como Asunto
3.
BMC Palliat Care ; 23(1): 117, 2024 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-38711035

RESUMEN

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Participación de la Comunidad/métodos , Participación de la Comunidad/psicología
5.
BMC Palliat Care ; 23(1): 114, 2024 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-38698367

RESUMEN

OBJECTIVES: To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. METHOD: A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. RESULTS: 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner's experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. CONCLUSION: VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC.


Asunto(s)
COVID-19 , Cuidados Paliativos , Humanos , Estudios Transversales , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicología , Masculino , COVID-19/psicología , Femenino , Persona de Mediana Edad , Adulto , Personal de Salud/psicología , Encuestas y Cuestionarios , Oncología Médica/métodos , Oncología Médica/normas , Actitud del Personal de Salud , SARS-CoV-2 , Pandemias , Consulta Remota/métodos
6.
G Ital Nefrol ; 41(2)2024 Apr 29.
Artículo en Italiano | MEDLINE | ID: mdl-38695224

RESUMEN

"Palliative dialysis" is defined as the renal replacement therapy directed to patients living the most critical phases of illness and the end-of-life stage. Offering targeted dialysis prescriptions becomes imperative when health conditions, along with comorbidities, unfavorable prognosis and complications, do not allow standard dialysis to be started or continued. Management should also integrate adequate supportive care measures in both incident and prevalent patients. This document summarizes nephrological recommendations and scientifical evidence regarding the palliative approach to dialysis, and proposes operative tools for a good clinical practice. After planning and sharing the route of care ("shared-decision-making"), which includes multidimensional evaluation of the patient, a pathway of treatment should be started, focusing on combining the therapeutical available options, adequacy and proportionality of care and patients' preferences. We propose a framework of indications that could help the nephrologist in practicing appropriate measures of treatment in patients' frailest conditions, with the aim of reducing the burden of dialysis, improving quality of life, providing a better control of symptoms, decreasing the hospitalization rates in the end-of-life stage and promoting a home-centered form of care. Such a decisional pathway is nowadays increasingly needed in nephrology practice, but not standardized yet.


Asunto(s)
Fallo Renal Crónico , Cuidados Paliativos , Diálisis Renal , Humanos , Toma de Decisiones Conjunta , Fallo Renal Crónico/terapia , Cuidados Paliativos/normas , Calidad de Vida , Diálisis Renal/normas , Guías de Práctica Clínica como Asunto
7.
BMC Palliat Care ; 23(1): 116, 2024 May 03.
Artículo en Inglés | MEDLINE | ID: mdl-38702653

RESUMEN

BACKGROUND: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. METHODS: Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. RESULTS: A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants' comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. CONCLUSIONS: The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. TRIAL REGISTRATION: The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).


Asunto(s)
Consenso , Técnica Delphi , Grupos Focales , Cuidados Paliativos , Humanos , Alemania , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Grupos Focales/métodos , Centros de Día/normas , Centros de Día/métodos , Femenino , Persona de Mediana Edad , Masculino , Adulto
8.
Acta Oncol ; 63: 259-266, 2024 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-38698699

RESUMEN

BACKGROUND: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference. PURPOSE: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients. Patients/material: Patients aged 18+ years who died from 2010 until 2020. METHOD: Register-based study with the Danish Palliative Care Database as the main data source. Indicator changes were reported as percentage fulfilment. RESULTS: From 2010 until 2020, the proportion of patients with non-cancer diseases in SPC increased slightly (2.5-7.2%). In 2019, fulfilment of the five indicators for cancer and non-cancer were: (1) 81% vs. 73%; (2) 73% vs. 68%; (3A) 50%; (3B) 2%; (4) 73% vs. 66%; (5) 73% vs. 65%. Whereas all other indicators improved, the proportion of patients waiting less than 10 days from referral to contact decreased. Differences between type of unit were found, mainly lower for hospice. INTERPRETATION: Most patients in SPC had cancer. All indicators except waiting time improved during the 10-year period. The establishment of the Danish Palliative Care Database may have contributed to the positive development; however, SPC in Denmark needs to be improved, especially regarding a reduction in waiting time and enhanced contact for non-cancer patients.


Asunto(s)
Bases de Datos Factuales , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/estadística & datos numéricos , Dinamarca , Neoplasias/terapia , Femenino , Anciano , Masculino , Persona de Mediana Edad , Adulto , Anciano de 80 o más Años , Indicadores de Calidad de la Atención de Salud , Adulto Joven , Sistema de Registros , Mejoramiento de la Calidad , Adolescente , Medición de Resultados Informados por el Paciente , Derivación y Consulta/estadística & datos numéricos , Calidad de la Atención de Salud
9.
J Hosp Palliat Nurs ; 26(3): 122-131, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38648625

RESUMEN

Constipation is a distressing symptom that has a high prevalence in patients receiving hospice and palliative care services, particularly in cases of opioid use. A thorough assessment, root cause analysis, monitoring, and prophylactic approach are essential for symptom management and quality of life. This rapid review assessed studies published between 2018 and 2023 to identify strategies implemented by health care professionals to prevent and/or mitigate this distressing symptom. We identified 12 articles that addressed constipation in palliative and end-of-life settings and reported on the need for multifactorial management approaches with a focus on patient-centered care that includes the caregiver(s). Bedside nurses play a key role in assessing, identifying, and managing constipation. Proper documentation and communication with the interdisciplinary team help direct earlier intervention and ongoing awareness of constipation issues. Additional research is needed on specific tools and enhanced guidelines to ensure constipation is frequently addressed and preemptively managed.


Asunto(s)
Estreñimiento , Cuidados Paliativos , Humanos , Estreñimiento/terapia , Estreñimiento/complicaciones , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/normas
10.
J Palliat Care ; 39(3): 217-226, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38584432

RESUMEN

Background: Nurses should have appropriate education and required competencies to provide high-quality palliative care. The aim of this international multisite study was to list and evaluate core palliative care competencies that European nurses need to achieve in their education to provide palliative care. Methods: The Nominal Group Technique (NGT) was used as a data collection method. NGT meetings were organized in four European countries. Targeted groups of palliative care professionals with diverse contextual and professional backgrounds participated in the NGTs. The research question was: "What are the core competencies in palliative care that need to be achieved during undergraduate nursing education?" Data analysis was done in two stages: grouping the top 10 answers based on similarities and thematic synthesis based on all the ideas produced during the NGTs. Results: Palliative care core competencies based on the research were (1) competence in the characteristics of palliative care; (2) competence in decision-making and enabling palliative care; (3) symptom management competence in palliative care; (4) competence in holistic support in palliative care; (5) active person- and family-centered communication competence in palliative care; (6) competence in empathy in palliative care; (7) spiritual competence in palliative care; (8) competence in ethical and legal issues in palliative care; (9) teamwork competence in palliative care; and (10) self-awareness and self-reflection competence in palliative care. Conclusions: It was possible to find differences and similarities in the top 10 palliative care core competencies from different countries. Thematic synthesis of all the data showed that there were various competencies needed for nursing students to provide quality palliative care.


Asunto(s)
Competencia Clínica , Bachillerato en Enfermería , Cuidados Paliativos , Humanos , Competencia Clínica/normas , Cuidados Paliativos/normas , Bachillerato en Enfermería/normas , Masculino , Adulto , Femenino , Europa (Continente) , Enfermería de Cuidados Paliativos al Final de la Vida/educación , Persona de Mediana Edad , Internacionalidad
11.
Support Care Cancer ; 32(5): 313, 2024 Apr 29.
Artículo en Inglés | MEDLINE | ID: mdl-38679639

RESUMEN

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.


Asunto(s)
Supervivientes de Cáncer , Técnica Delphi , Neoplasias , Cuidados Paliativos , Supervivencia , Humanos , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Guías de Práctica Clínica como Asunto , Atención Dirigida al Paciente/normas , Atención Dirigida al Paciente/organización & administración , Metástasis de la Neoplasia , Calidad de la Atención de Salud/normas
12.
BMC Palliat Care ; 23(1): 109, 2024 Apr 26.
Artículo en Inglés | MEDLINE | ID: mdl-38671419

RESUMEN

OBJECTIVES: Many associations have recently recommended early integration of oncology and palliative care for more standard cancer care and better quality of life. We aimed to create a questionnaire to assess the opinion of medical oncologists and nurses about the clinical impact of the integrated palliative care and oncology (PCO) program. METHODS: A novel semi-structured questionnaire called Impact of Early Integration of Palliative Care Oncology (IEI PCO) questionnaire was developed and tested for validity and reliability then distributed to the oncologists and nurses working in Kuwait Cancer Control Center. RESULTS: After the pilot stage, testing the final questionnaire for validity and reliability was done with satisfactory results. Finally, the complete questionnaires were 170 out of 256 (response rate 66.41%). More awareness about the available palliative care services and the new available PCO services (p-value < 0.001 for all). Most of the oncologists and nurses agreed with the currently available structure of PCO, appreciated the patients' discharge plan and continuity of care of palliative medicine, admitted less work burden, a better attitude, and higher satisfaction (p-value for all < 0.001) toward palliative care. Significant improvements in symptoms were appreciated by oncologists and nurses after the integration of palliative care (p-value for all < 0.001. Oncologists and nurses valued repeated honest communication, discussion of the goals of care, dealing more effectively with ending active treatment, and higher acceptance of patients and families of PC policy of transfer, and significant progress in the care of end-of-life symptoms (p-value for all < 0.001). CONCLUSIONS: The IEI PCO questionnaire demonstrated the psychometric criteria for content, face, and construct validity and reliability. It provides a valuable tool to assess the impact of PCO integration. The opinion of medical oncologists and nurses was significantly positive toward the early integration of PCO in Kuwait in most aspects of care. This integration led to improved symptom control, end-of-life care, communication, and planned discharge and follow-up plans. Moreover, decreases the work burden, improves attitude, higher satisfaction of the oncology staff, and continuity of care.


Asunto(s)
Oncólogos , Cuidados Paliativos , Humanos , Encuestas y Cuestionarios , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Femenino , Masculino , Kuwait , Reproducibilidad de los Resultados , Adulto , Persona de Mediana Edad , Oncólogos/psicología , Oncólogos/normas , Enfermeras y Enfermeros/psicología , Enfermeras y Enfermeros/estadística & datos numéricos , Psicometría/instrumentación , Psicometría/métodos , Oncología Médica/métodos , Oncología Médica/normas , Actitud del Personal de Salud , Prestación Integrada de Atención de Salud/métodos , Prestación Integrada de Atención de Salud/normas
13.
BMC Palliat Care ; 23(1): 106, 2024 Apr 23.
Artículo en Inglés | MEDLINE | ID: mdl-38649882

RESUMEN

BACKGROUND: As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter tradition in China, although it is growing in the last decade. Sampling and comparing the perspectives of these pediatricians could be insightful for both countries. Therefore, we sampled and compared perspectives of pediatricians in China and Belgium toward PPC, and explored factors influencing their perspectives. METHODS: We conducted a cross-sectional online survey using the validated Pediatric Palliative Care Attitude Scale (PPCAS). Over a five-month period, we recruited pediatricians practicing in China (C) and Flanders (F), Belgium. Convenience sampling and snowballing were used. We analyzed data with descriptive statistics, and evaluated group differences with univariate, multivariate and correlation tests. RESULTS: 440 complete surveys were analyzed (F: 115; C: 325). Pediatricians in both regions had limited PPC experience (F: 2.92 ± 0.94; C: 2.76 ± 0.92). Compared to Flemish pediatricians, Chinese pediatricians perceived receiving less unit support (F: 3.42 ± 0.86; C: 2.80 ± 0.89); perceived PPC less important (F: 4.70 ± 0.79; C: 4.18 ± 0.94); and faced more personal obstacles while practicing PPC (F: 3.50 ± 0.76; C: 2.25 ± 0.58). Also, select socio-demographic characteristics (e.g., experiences caring for children with life-threatening condition and providing PPC) influenced pediatricians' perspectives. Correlational analyses revealed that pediatricians' PPC experiences significantly correlated with perceived unit support (ρF = 0.454; ρC=0.661). CONCLUSIONS: Chinese pediatricians faced more barriers in practicing PPC. Expanding PPC experiences can influence pediatricians' perspectives positively, which may be beneficial for the child and their family.


Asunto(s)
Actitud del Personal de Salud , Cuidados Paliativos , Pediatras , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Bélgica , China , Estudios Transversales , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Pediatras/psicología , Pediatras/estadística & datos numéricos , Pediatría/métodos , Pediatría/normas , Encuestas y Cuestionarios
14.
J Hosp Palliat Nurs ; 26(3): 116-121, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38483165

RESUMEN

The adult/gerontology (gero) nurse practitioner (NP) delivers primary and/or specialty palliative care to persons and their families who live each day with a myriad of serious illnesses. In this role, the adult/gero NP uses their skill set to address the whole person (physical, psychological, social, and spiritual/existential) to improve the quality of life for persons they care for. This article is the fourth in a series of 6 highlighting the different roles of the adult/gero NP and the advanced certified hospice and palliative registered nurse, and how these 2 roles overlap. The purpose of this article was to provide details of education and certification pathways for these NP roles, describe the overlaps in clinical care, and illustrate how the adult/gero NP in palliative and hospice care can contribute to leadership in program development for care of persons and their families who live with serious illness.


Asunto(s)
Enfermeras Practicantes , Rol de la Enfermera , Cuidados Paliativos , Humanos , Enfermeras Practicantes/tendencias , Enfermeras Practicantes/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Adulto , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/normas
15.
J Hosp Palliat Nurs ; 26(3): 149-157, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38206372

RESUMEN

Organ, tissue, and eye donations provide opportunities to leave a legacy by saving and/or enhancing the quality of life of others. There has been little published related to tissue or eye donation in hospice/palliative care and few initiatives to facilitate donation among hospice patients/families. Donation myths, gaps in knowledge, and, most significantly, lack of donation referral processes result in missed opportunities for patient/families to consider donation. One donor has the potential to impact 75 lives or more through tissue donation and 2 lives through eye donation. Hospice/palliative care providers can play key roles related to education, advocacy, and collaboration. The support of hospice/palliative care organizations and the local Organ Procurement Organization/Tissue and Eye Recovery Agency are essential for facilitating donation opportunities. This article summarizes current literature, examines legislation and regulations related to donation, presents a case that illustrates an opportunity for hospice community based donation, and shares practices that support donation in hospice/palliative care organizations together with the local Organ Procurement Organization/Tissue and Eye Recovery Agency. This article will hopefully provide the impetus for further study and the development of practices to optimize donation in hospice/palliative care, thus providing more patients and families the opportunity to turn loss into legacy.


Asunto(s)
Cuidados Paliativos , Obtención de Tejidos y Órganos , Humanos , Obtención de Tejidos y Órganos/métodos , Obtención de Tejidos y Órganos/tendencias , Obtención de Tejidos y Órganos/estadística & datos numéricos , Obtención de Tejidos y Órganos/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/tendencias , Cuidados Paliativos/normas , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/tendencias , Ojo
16.
J Gen Intern Med ; 39(6): 893-901, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38240917

RESUMEN

BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.


Asunto(s)
Aflicción , Cuidados Paliativos , Calidad de la Atención de Salud , Cuidado Terminal , Humanos , Cuidados Paliativos/normas , Masculino , Anciano , Femenino , Estudios Retrospectivos , Anciano de 80 o más Años , Cuidado Terminal/normas , Pacientes Internos , Estudios de Cohortes , Cuidados Paliativos al Final de la Vida/normas , Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Estados Unidos , Hospitalización/estadística & datos numéricos
17.
J Palliat Care ; 39(3): 194-201, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38115739

RESUMEN

Objective: The Palliative Performance Scale (PPS) has been reported to be as accurate as Palliative Prognostic Index (PPI). PPS is a component of the simplified PPI (sPPI). It is unknown whether PPS is as accurate as sPPI. This study aimed to compare the prognostic performance of the PPS and sPPI in patients with advanced cancer in a home palliative care setting in South Korea. Methods: This was a secondary analysis of a prospective cohort study that included Korean patients with advanced cancer who received home-based palliative care. We used the medical records maintained by specialized palliative care nurses. We computed the prognostic performance of PPS and sPPI using the area under the receiver operating characteristic curve (AUROC) and calibration plots for the 3- and 6-week survival. Results: A total of 80 patients were included, with a median overall survival of 47.0 days. The AUROCs of PPS were 0.71 and 0.69 at the 3- and 6-week survival predictions, respectively. The AUROCs of sPPI were 0.87 and 0.73 at the 3- and 6-week survival predictions, respectively. The calibration plot demonstrated satisfactory agreement across all score ranges for both the PPS and sPPI. Conclusions: This study showed that the sPPI assessed by nurses was more accurate than the PPS in a home palliative care setting in predicting the 3-week survival in patients with advanced cancer. The PPS can be used for a quick assessment.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Neoplasias , Cuidados Paliativos , Humanos , Masculino , Femenino , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/estadística & datos numéricos , Anciano , Persona de Mediana Edad , Estudios Prospectivos , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Servicios de Atención de Salud a Domicilio/normas , República de Corea , Pronóstico , Anciano de 80 o más Años , Adulto , Estudios de Cohortes
18.
Breast Cancer Res Treat ; 200(3): 347-354, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37269438

RESUMEN

PURPOSE: The potential disparities in palliative care delivery for underrepresented minorities with breast cancer are not well known. We sought to determine whether race and ethnicity impact the receipt of palliative care for patients with metastatic breast cancer (MBC). METHODS: We retrospectively reviewed the National Cancer Database for female patients diagnosed with stage IV breast cancer between 2010 and 2017 who received palliative care following diagnosis of MBC to assess the proportion of patients who received palliative care, including non-curative-intent local-regional or systemic therapy. Multivariable logistic regression analysis was performed to identify variables associated with receiving palliative care. RESULTS: 60,685 patients were diagnosed with de novo MBC. Of these, only 21.4% (n = 12,963) received a palliative care service. Overall, there was a positive trend in palliative care receipt from 18.2% in 2010 to 23.0% in 2017 (P < 0.001), which persisted when stratified by race and ethnicity. Relative to non-Hispanic White women, Asian/Pacific Islander women (aOR 0.80, 95% CI 0.71-0.90, P < 0.001), Hispanic women (adjusted odds ratio [aOR] 0.69, 95% CI 0.63-0.76, P < 0.001), and non-Hispanic Black women (aOR 0.94, 95% CI 0.88-0.99, P = 0.03) were less likely to receive palliative care. CONCLUSIONS: Fewer than 25% of women with MBC received palliative care between 2010 and 2017. While palliative care has significantly increased for all racial/ethnic groups, Hispanic White, Black, and Asian/Pacific Islander women with MBC still receive significantly less palliative care than non-Hispanic White women. Further research is needed to identify the socioeconomic and cultural barriers to palliative care utilization.


Asunto(s)
Neoplasias de la Mama , Disparidades en Atención de Salud , Cuidados Paliativos , Femenino , Humanos , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/etnología , Neoplasias de la Mama/secundario , Neoplasias de la Mama/terapia , Etnicidad , Disparidades en Atención de Salud/etnología , Disparidades en Atención de Salud/estadística & datos numéricos , Hispánicos o Latinos/estadística & datos numéricos , Cuidados Paliativos/normas , Cuidados Paliativos/estadística & datos numéricos , Estudios Retrospectivos , Estados Unidos/epidemiología , Blanco/estadística & datos numéricos , Asiático Americano Nativo Hawáiano y de las Islas del Pacífico/estadística & datos numéricos , Negro o Afroamericano/estadística & datos numéricos
19.
Palliat Med ; 36(8): 1296-1304, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35766525

RESUMEN

BACKGROUND: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. AIM: To establish expert consensus on the most important components of out-of-hours community palliative care services. DESIGN: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project's patient and public involvement advisory group. The components deemed 'essential' by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. PARTICIPANTS: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. RESULTS: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. CONCLUSIONS: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.


Asunto(s)
Atención Posterior , Cuidadores/normas , Personal de Salud/estadística & datos numéricos , Cuidado Terminal/normas , Cuidadores/psicología , Atención a la Salud , Técnica Delphi , Grupos Focales , Personal de Salud/psicología , Humanos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Cuidado Terminal/psicología
20.
PLoS One ; 17(2): e0259647, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35202415

RESUMEN

BACKGROUND: Hospice care is a multidisciplinary approach that focused on patients' quality of life, and nurses allocate more of their time with patients and patients' families than those nurses working in other disciplines. Nurses' knowledge of and attitudes toward hospice care can affect the quality of hospice care. At present, China's hospice care institutions are suffering from an obvious shortage of nursing staff. Since clinical nurses are the main force behind the future provision of hospice care, their knowledge of, attitudes and willingness to practice can greatly promoted the growth of hospice care, however, available data on clinical nurses' willingness to practice hospice care are limited. METHODS: A cross-sectional descriptive study design was employed to collect data from 1833 nurses working in tertiary or secondary general hospitals in Guangxi, China. We examined nurses' demographic characteristics and scores on the Chinese version of the hospice care knowledge scale, the Chinese version of the Bradley Attitude Assessment Questionnaire, and a brief quiz concerning their willingness to practice hospice care in the future. Descriptive, single factor, multiple regression analyses and logistic regression analyses were used for data analysis. RESULTS: Nurses displayed moderate mean scores for both knowledge of and attitudes, and only 505 (27.5%) nurses expressed their willingness to practice hospice care, 1329 (72.5%) of nurses sampled expressed their unwillingness or uncertainty. Multivariate regression analyses showed that education, professional qualification, monthly income, whether they had been trained in hospice care, and willingness to practice hospice care were the main influencing factors of knowledge; education, whether they lived with someone aged >60 years, and whether they had been trained in hospice care were main factors influencing attitudes. Additionally, logistic regression analyses showed that hospice care knowledge, whether they had been trained in hospice care, and whether they had clinical experience affected the nurses' willingness to practice hospice care. CONCLUSION: This study highlighted a knowledge gap and moderate attitudes toward hospice care among nurses, and most nurses did not prefer to practice hospice care. Having been trained in hospice care was the main common factor of nurses' knowledge of, attitudes toward, and willingness to practice hospice care in the future, indicating the necessity to provide nurses with more targeted hospice care training.


Asunto(s)
Actitud del Personal de Salud , Competencia Clínica/normas , Conocimientos, Actitudes y Práctica en Salud , Enfermeras y Enfermeros/normas , Adulto , Femenino , Cuidados Paliativos al Final de la Vida/psicología , Humanos , Masculino , Persona de Mediana Edad , Enfermeras y Enfermeros/psicología , Personal de Enfermería en Hospital/psicología , Personal de Enfermería en Hospital/normas , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Encuestas y Cuestionarios , Adulto Joven
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