RESUMEN
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. 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. 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. 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)
Humanos , Cuidados Paliativos/normas , Personal de Salud/educación , Modelos de Atención de Salud , PakistánRESUMEN
BACKGROUND: The need to integrate palliative/end-of-life care across healthcare systems is critical considering the increasing prevalence of health-related suffering. In burn care, however, a general lack of practice recommendations persists. Our burn unit developed practice recommendations to be implemented and this study aimed to examine the components of the practice recommendations that were utilised and aspects that were not to guide further training and collaborative efforts. METHODS: We employed a prospective clinical observation approach and chart review to ascertain the utilisation of the recommendations over a 3-year period for all burn patients. We formulated a set of trigger parametres based on existing literature and burn care staff consultation in our unit. Additionally, a checklist based on the practice recommendations was created to record the observations and chart review findings. All records were entered into a secure form on Google Forms following which we employed descriptive statistics in the form of counts and percentages to analyse the data. RESULTS: Of the 170 burn patients admitted, 66 (39%) persons died. Although several aspects of each practice recommendation were observed, post-bereavement support and collaboration across teams are still limited. Additionally, though the practice recommendations were comprehensive to support holistic care, a preponderance of delivering physical care was noted. The components of the practice recommendations that were not utilised include undertaking comprehensive assessment to identify and resolve patient needs (such as spiritual and psychosocial needs), supporting family members across the injury trajectory, involvement of a palliative care team member, and post-bereavement support for family members, and burn care staff. The components that were not utilised could have undoubtedly helped to achieve a comprehensive approach to care with greater family and palliative care input. CONCLUSION: We find a great need to equip burn care staff with general palliative care skills. Also, ongoing collaboration/ partnership between the burn care and palliative care teams need to be strengthened. Active family engagement, identifying, and resolving other patient needs beyond the physical aspect also needs further attention to ensure a comprehensive approach to end of life care in the burn unit.
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Unidades de Quemados , Quemaduras , Unidades de Cuidados Intensivos , Cuidados Paliativos , Cuidado Terminal , Humanos , Quemaduras/terapia , Cuidados Paliativos/normas , Cuidado Terminal/normas , Masculino , Ghana , Femenino , Persona de Mediana Edad , Adulto , Unidades de Cuidados Intensivos/normas , Unidades de Cuidados Intensivos/organización & administración , Estudios Prospectivos , Unidades de Quemados/organización & administración , Anciano , Adulto Joven , Adolescente , Guías de Práctica Clínica como Asunto , Salud Holística , Centros de Atención Terciaria , Lista de VerificaciónRESUMEN
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 , InternacionalidadRESUMEN
OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. METHODS: Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. RESULTS: Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.
Asunto(s)
Cuidados Paliativos , Tacto Terapéutico , Humanos , Proyectos Piloto , Femenino , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicología , Masculino , Italia , Adulto , Tacto Terapéutico/métodos , Tacto Terapéutico/normas , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricos , Persona de Mediana Edad , Pediatría/métodos , Pediatría/normas , Agotamiento Profesional/psicología , Agotamiento Profesional/etiologíaRESUMEN
BACKGROUND: Very little research has been reported examining nonpharmacological symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy. OBJECTIVES: The aim of this study was to determine if completing a Reiki intervention with hospitalized 1- to 5-year-old children with chronic, life-limiting conditions receiving palliative care was feasible and acceptable. METHODS: Children ages 1-5 years receiving palliative care who were expected to be hospitalized for at least 3 weeks were recruited for a single-arm, mixed-methods, quasi-experimental pre- and poststudy. Six protocolized Reiki sessions were conducted over 3 weeks. We calculated feasibility by the percentage of families enrolled in the study and acceptability by the percentage of families who completed all measures and five out of six Reiki sessions. Measures were collected at baseline, at the end of the intervention period, and 3 weeks later. At the final follow-up visit, parents were verbally asked questions relating to the acceptability of the intervention in a short structured interview. RESULTS: We screened 90 families, approached 31 families, and recruited 16 families, whereas 15 families declined. Reasons for not participating included that the child had "a lot going on," would be discharged soon, and families were overwhelmed. Of those enrolled, most completed all measures at three time points and five out of six Reiki sessions. We completed nearly all scheduled Reiki sessions for families that finished the study. All parents reported that they would continue the Reiki if they could, and almost all said they would participate in the study again; only one parent was unsure. DISCUSSION: Young children and their parents found Reiki acceptable; these results are comparable to an earlier study of children 7-16 years of age receiving palliative care at home and a study of massage for symptom management for hospitalized children with cancer. These findings add to the literature and support further investigation of Reiki's efficacy as a nonpharmacological symptom management intervention.
Asunto(s)
Masaje/normas , Manejo del Dolor/normas , Cuidados Paliativos/normas , Pediatría/normas , Guías de Práctica Clínica como Asunto , Tacto Terapéutico/normas , Adolescente , Factores de Edad , Niño , Preescolar , Estudios de Factibilidad , Femenino , Humanos , Lactante , MasculinoRESUMEN
PURPOSE: Hospitals and healthcare organizations are today operating in an extremely competitive environment, with increasing pressure to improve quality while reducing costs. In responding to this dynamic situation, transformation of any organization requires the will to organize delivery around the needs of patients. RECENT FINDINGS: Providing palliative care to the many who require it needs the value agenda to be formulated based on mutually reinforcing components. Here we present an overview of the framework for a palliative care department in a comprehensive cancer center, which includes different levels that are embedded within a comprehensive system. Detailed information on each level is presented, followed by a discussion of quality of care, as an integrating theme for the framework. The chapter concludes by detailing the benefits that a comprehensive cancer palliative care center provides to a country's healthcare efforts through service, education, research, and advocacy.
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Neoplasias/terapia , Cuidados Paliativos/organización & administración , Recursos en Salud , Cuidados Paliativos al Final de la Vida , Humanos , Tecnología de la Información , Cuidados Paliativos/economía , Cuidados Paliativos/normas , Planificación de Atención al Paciente , Guías de Práctica Clínica como Asunto , Calidad de la Atención de SaludRESUMEN
PURPOSE OF REVIEW: The current review is relevant because despite significant progress in oncology, a large proportion of patients with cancer still experience morbidity and symptoms, resulting from the cancer and/or its treatment. RECENT FINDINGS: The main theme concerns the definition of excellence of Supportive Care centers based on the indications of the Multinational Association Supportive Care Cancer (MASCC) because there are no data in literature on this topic. SUMMARY: Supportive care centers provide assistance to cancer patients suffering for anticancer treatments-related adverse effects. This leads to patient management with immediate evaluation and treatment of symptoms and therefore with improvement of quality of life and survival. In addition, there is less use of emergency room and hospitalizations with consequent savings of resources. According to MASCC evaluation criteria, some types of centers could be excellent in supportive care in cancer. Size, number of treated patients, or academic presence are not mandatory for the certification of excellence. However, centrality of patient and assessment of patient's needs, dedicated organizational models to evaluate and treat the adverse effects of anticancer treatments, dedicated activity and multidisciplinary staff, teaching programs, and adherence to guidelines are milestones for good clinical practices and consequently the centers that practice them represent the excellence in supportive care in cancer.
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Instituciones Oncológicas/normas , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Instituciones Oncológicas/organización & administración , Ensayos Clínicos como Asunto , Humanos , Oncología Integrativa/métodos , Oncología Integrativa/normas , Neoplasias/tratamiento farmacológicoRESUMEN
While recent medical advances have led to cure, remission, or long-term disease control for patients with hematologic malignancy, many still portend poor prognoses, and frequently are associated with significant symptom and quality of life burden for patients and families. Patients with hematological cancer are referred to palliative care (PC) services less often than those with solid tumors, despite higher inpatient mortality and shorter interval between first consultation and death. The complexity of individual prognostication, ongoing therapeutic goals of cure, the technical nature and complications of treatment, the intensity of medical care even when approaching end of life, and the speed of change to a terminal event all pose difficulties and hinder referral. A modified palliative care model is an unmet need in hemato-oncology, where PC is introduced early from the diagnosis of hematological malignancy, provided alongside care of curative or life-prolonging intent, and subsequently leads to death and bereavement care or cure and survivorship care depending on disease course. From current evidence, the historical prioritization of cancer care at the center of palliative medicine did not guarantee that those diagnosed with a hematological malignancy were assured of referral, timely or otherwise. Hopefully, this article can be a catalyst for debate that will foster a new direction in integration of clinical service and research, and subspecialty development at the interface of hemato-oncology and palliative care.
Asunto(s)
Prestación Integrada de Atención de Salud , Neoplasias Hematológicas/terapia , Oncología Médica , Cuidados Paliativos , Grupo de Atención al Paciente/organización & administración , Continuidad de la Atención al Paciente/organización & administración , Continuidad de la Atención al Paciente/normas , Prestación Integrada de Atención de Salud/métodos , Prestación Integrada de Atención de Salud/organización & administración , Prestación Integrada de Atención de Salud/normas , Humanos , Comunicación Interdisciplinaria , Oncología Médica/métodos , Oncología Médica/organización & administración , Oncología Médica/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/organización & administración , Cuidados Paliativos/normas , Grupo de Atención al Paciente/normas , Derivación y Consulta/organización & administración , Derivación y Consulta/normasRESUMEN
BACKGROUND: Palliative care is one of the necessary elements in the treatment of children with cancer. Adaptation of country-specific palliative care practices to universal standards can provide valuable information for health care stakeholders. AIM: This study proposed to evaluate the global compliance of palliative care for children with cancer among select Middle Eastern countries. METHODS: In this comparative study, information about palliative care principles in Iran, Jordan, Saudi Arabia, Lebanon and Turkey was extracted from the literature. Data were collected using a checklist based on the conceptual framework of palliative care inspired by Wolff and Browne's (2011) standards. Then the extracted information was compared and analysed. FINDINGS: The palliative care standards in the selected countries did not show full compliance with global standards. In all selected countires, the child's and family's needs were considered, and a comprehensive care approach was followed. However, in none of the selected countries was the child's agreement to discharge from the hospital obtained, and neither was it ensured that the needs of the child and family were met. CONCLUSIONS: Palliative care principles in the selected Middle Eastern countries are far from meeting universal standards. Accordingly, planning and training are recommended in different domains of nursing education as well as clinical nursing in the care of children. Healthcare authorities and politicians must provide the appropriate conditions for better provision of palliative care for children with cancer.
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Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias , Cuidados Paliativos/normas , Niño , Familia , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Humanos , Medio Oriente , Neoplasias/terapiaRESUMEN
BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering. CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death. CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
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Existencialismo/psicología , Dolor/psicología , Cuidados Paliativos/normas , Anciano , Femenino , Humanos , Masculino , Neoplasias/complicaciones , Neoplasias/psicología , Dolor/etiología , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Habitaciones de Pacientes/organización & administración , Habitaciones de Pacientes/estadística & datos numéricos , Calidad de Vida/psicologíaRESUMEN
Palliative care providers find meaning in their work, even though stress, burnout, and compassion fatigue can be a concern. In this study, we aimed to explore the experiences of well-being of palliative care providers in Malaysia. Data collected using semistructured interviews were thematically analyzed. Eighteen palliative care providers participated: 9 doctors and 9 nurses. Five subthemes were generated: (1) values and strengths, (2) coping and work-life balance, (3) social support and spirituality, (4) passion and satisfaction, and (5) learning, growth, and transformation. These subthemes were further categorized into 2 themes: resilience and reward. The results may inform the development of interventions in the promotion and sustenance of well-being of palliative care providers.
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Personal de Salud/psicología , Satisfacción en el Trabajo , Cuidados Paliativos/normas , Adaptación Psicológica , Adulto , Agotamiento Profesional/etiología , Agotamiento Profesional/prevención & control , Agotamiento Profesional/psicología , Desgaste por Empatía/etiología , Desgaste por Empatía/prevención & control , Desgaste por Empatía/psicología , Femenino , Personal de Salud/estadística & datos numéricos , Humanos , Malasia , Masculino , Cuidados Paliativos/psicología , Cuidados Paliativos/estadística & datos numéricos , Investigación Cualitativa , EspiritualidadRESUMEN
BACKGROUND: A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients. METHODS: The IPOS (English) patient-reported measure was translated into Turkish following published guidelines including, 2 independent forward, 2 independent blind backward translations, expert panel review by 7 members and field testing with 11 cognitive interviews (5 patients and 6 specialists) and final approval of the copyright holder. Consecutive cancer patients (n = 234) seen by the community palliative care services were recruited from Help Those with Cancer Society (KHYD); of those 82 were followed-up. The instrument was administered by personal interview. Confirmatory Factor Analysis was used to validate the factor structure of Turkish IPOS. Internal consistency reliability of the subscales was evaluated by Cronbach's alpha and Intraclass Correlation Coefficient respectively. Validity was assessed by calculating Pearson's correlation coefficient (r) between Turkish IPOS scores and Turkish version of EQ-5D-3L - a validated generic measure of health status developed by the EuroQol Group. RESULTS: Turkish IPOS is conceptually and semantically equivalent to the English version and linguistically valid. The CFA was inconclusive for the three factor structure due to low sample size, as the SRMR and CFI tests only approached the defined minimums warranting further investigation. There were low levels of missing values, and no ceiling or floor effects. The Physical (α = 0.91) and the Social and Quality of Care Issues (α = 0.75) sub-scales showed good internal consistencies, however Emotional sub-scale showed poor internal consistency (α = 0.64). The reliability of the Physical (ICC = 0.51, 0.45-0.56 95% CI) and Social Quality of Care Issues (ICC = 0.50, 0.42-0.57 95% CI) were moderate. Poor internal consistency (α =0.64) and reliability (ICC = 0.31, 0.24-0.39, 95% CI) was obtained for Emotional Subscale. Construct validity was evidenced through significant correlations in the predicted directions and strength with EQ-5D. Turkish IPOS showed higher needs and concerns in participants at more advanced stages than those at earlier stages of cancer. The standardized response mean (SRM) of - 0.94 suggested large internal responsiveness to clinical change. CONCLUSION: Turkish IPOS is a clear, relevant, acceptable measure and responsive to the needs and concerns of cancer patients, observing regional differences, it may have implications for use in other Turkish speaking communities. Future studies are needed to clarify the factor structure, assess its external responsiveness and to improve the properties of its Emotional subscale.
Asunto(s)
Cuidados Paliativos/normas , Medición de Resultados Informados por el Paciente , Atención Dirigida al Paciente/normas , Psicometría/normas , Anciano , Comparación Transcultural , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida , Reproducibilidad de los Resultados , TraduccionesRESUMEN
The purpose of this integrative review was to appraise the qualitative and quantitative literature for community-level health behavior theory application to palliative care nursing to identify their use and future research implications. To date, there has not been an integrative review of the nursing studies that have used community-level health behavior theory to guide palliative care nursing research. Despite the availability of high-quality care, there continues to be underuse of resources. An integrative review on community-level theory application may provide a more holistic understanding of previous interventions to frame future interventions and research needs. The review was guided by the 5-step framework of Whittemore and Knafl. Relevant literature was searched and appraised. Seven different community-level health behavior theories were found with applications to palliative care nursing, and 16 studies using these theories were identified for discussion. Community-Based Participatory Research was the most used theory. Community-level health behavior theories such as Community-Based Participatory Research have helped build partnerships and activate community resources such as capacity, engagement, and diversity through culturally sensitive training interventions. Further research using these theories in palliative care nursing can realize positive outcomes, particularly in low-income rural areas.
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Servicios de Salud Comunitaria/métodos , Cuidados Paliativos/métodos , Servicios de Salud Comunitaria/normas , Servicios de Salud Comunitaria/estadística & datos numéricos , Humanos , Cuidados Paliativos/normas , Cuidados Paliativos/estadística & datos numéricosRESUMEN
BACKGROUND: The coronavirus disease 2019 pandemic has led to escalating infection rates and associated deaths worldwide. Amid this public health emergency, the urgent need for palliative care integration throughout critical care settings has never been more crucial. OBJECTIVE: To promote palliative care engagement in critical care; share palliative care resources to support critical care nurses in alleviating suffering during the coronavirus disease 2019 pandemic; and make recommendations to strengthen nursing capacity to deliver high-quality, person-centered critical care. METHODS: Palliative and critical care literature and practice guidelines were reviewed, synthesized, and translated into recommendations for critical care nursing practice. RESULTS: Nurses are ideally positioned to drive full integration of palliative care into the critical care delivery for all patients, including those with coronavirus disease 2019, given their relationship-based approach to care, as well as their leadership and advocacy roles. Recommendations include the promotion of healthy work environments and prioritizing nurse self-care in alignment with critical care nursing standards. CONCLUSIONS: Nurses should focus on a strategic integration of palliative care, critical care, and ethically based care during times of normalcy and of crisis. Primary palliative care should be provided for each patient and family, and specialist services sought, as appropriate. Nurse educators are encouraged to use these recommendations and resources in their curricula and training. Palliative care is critical care. Critical care nurses are the frontline responders capable of translating this holistic, person-centered approach into pragmatic services and relationships throughout the critical care continuum.
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COVID-19/enfermería , Enfermería de Cuidados Críticos/organización & administración , Enfermería de Cuidados Críticos/normas , Rol de la Enfermera , Cuidados Paliativos/organización & administración , Cuidados Paliativos/normas , Guías de Práctica Clínica como Asunto , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pandemias , SARS-CoV-2RESUMEN
BACKGROUND: Palliative care is associated with improved survival and quality of life among patients with lung cancer; however, its influence on health-care utilization and quality of care is unclear. RESEARCH QUESTION: Is palliative care, and the setting in which it occurs, associated with health-care resource utilization and quality of care among patients with advanced lung cancer? STUDY DESIGN AND METHODS: This was a retrospective cohort study of 23,142 patients with stage IIIB/IV lung cancer in the Veterans Affairs HealthCare System between 2007 and 2013. Exposures included the receipt of specialist-delivered palliative care, and the setting of the initial palliative care encounter (inpatient or outpatient) received after cancer diagnosis. Primary outcomes included rates of ED visits, along with rates of hospitalization and odds of ICU admission within the last 30 days of life. Secondary outcomes included any health-care utilization (ED, hospital, or ICU) related to chemotherapy toxicity. We used propensity score methods to perform Poisson and logistic regression modeling. RESULTS: Among the 23,142 patients, 57% received palliative care, and 36% of initial palliative care encounters were outpatient. Compared with no palliative care, initial palliative care encounter in the outpatient setting was associated with reduced rates of ED visits (adjusted incidence rate ratio [aIRR], 0.86; 95% CI, 0.77-0.96) and hospitalizations in the last 30 days of life (aIRR, 0.64; 95% CI, 0.59-0.70). Initial palliative care encounters in both inpatient (adjusted OR [aOR], 0.63; 95% CI, 0.53-0.75) and outpatient (aOR, 0.42; 95% CI, 0.35-0.52) settings were associated with reduced odds of ICU admission in the last 30 days of life. Palliative care was also associated with reduced health-care utilization related to chemotherapy toxicity (aOR, 0.88; 95% CI, 0.82-0.95). INTERPRETATION: Palliative care (particularly in outpatient settings) is associated with reduced health-care utilization at the end of life and may improve the quality of care among patients with advanced lung cancer. These findings support the role of palliative care as an important component of comprehensive cancer care and highlight the potential benefits of outpatient palliative care services.
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Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Neoplasias Pulmonares , Cuidados Paliativos , Aceptación de la Atención de Salud/estadística & datos numéricos , Calidad de Vida , Anciano , Atención Integral de Salud/métodos , Femenino , Humanos , Neoplasias Pulmonares/patología , Neoplasias Pulmonares/psicología , Neoplasias Pulmonares/terapia , Masculino , Estadificación de Neoplasias , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Cuidados Paliativos/estadística & datos numéricos , Calidad de la Atención de Salud/normas , Estudios Retrospectivos , Cuidado Terminal/métodos , Estados UnidosRESUMEN
AIM: The aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart failure. METHODS AND RESULTS: This cross-sectional study investigated 100 heart failure patients (40 women, 60 men; median age 79 years) within the first few days of their hospitalisation by applying the integrated palliative care outcome scale (3-day recall period) and two additional self-developed questions about the suitability and comprehensibility of the integrated palliative care outcome scale. Clinically relevant somatic and psycho-emotional symptoms were reported very frequently (approximately 75% each), followed by communicational needs or practical issues. Ninety-five per cent of patients thought the integrated palliative care outcome scale very easy to understand, and 91% judged the integrated palliative care outcome scale suitable to assess palliative care needs. CONCLUSION: The integrated palliative care outcome scale was well accepted by hospitalised patients with heart failure and identified a high burden of both physical and psycho-emotional symptoms. Screening for palliative care has to consider patients and their relatives alike, and should be part of a comprehensive care concept jointly integrated into clinical routine by primary and specialised palliative care teams.
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Insuficiencia Cardíaca/enfermería , Enfermería de Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Pacientes Internos/estadística & datos numéricos , Evaluación de Necesidades/estadística & datos numéricos , Evaluación de Necesidades/normas , Cuidados Paliativos/estadística & datos numéricos , Cuidados Paliativos/normas , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Masculino , Guías de Práctica Clínica como Asunto , Psicometría , Reproducibilidad de los ResultadosRESUMEN
BACKGROUND: Patients with advanced cancer, receiving at-home palliative care, are subject to numerous symptoms that are changeable and often require attention, a stressful situation that also impacts on the family caregiver. It has been suggested that music therapy may benefit both the patient and the caregiver. We propose a study to analyse the efficacy and cost utility of a music intervention programme, applied as complementary therapy, for cancer patients in palliative care and for their at-home caregivers, compared to usual treatment. METHOD: A randomised, double-blind, multicentre clinical trial will be performed in cancer patients in at-home palliative care and their family caregivers. The study population will include two samples of 40 patients and two samples of 41 caregivers. Participants will be randomly assigned either to the intervention group or to the control group. The intervention group will receive a seven-day programme including music sessions, while the control group will receive seven sessions of (spoken word) therapeutic education. In this study, the primary outcome measure is the assessment of patients' symptoms, according to the Edmonton Symptom Assessment System, and of the overload experienced by family caregivers, measured by the Caregiver Strain Index. The secondary outcomes considered will be the participants' health-related quality of life, their satisfaction with the intervention, and an economic valuation. DISCUSSION: This study is expected to enhance our understanding of the efficacy and cost-utility of music therapy for cancer patients in palliative care and for their family caregivers. The results of this project are expected to be applicable and transferrable to usual clinical practice for patients in home palliative care and for their caregivers. The approach described can be incorporated as an additional therapeutic resource within comprehensive palliative care. To our knowledge, no previous high quality studies, based on a double-blind clinical trial, have been undertaken to evaluate the cost-effectiveness of music therapy. The cost-effectiveness of the project will provide information to support decision making, thereby improving the management of health resources and their use within the health system. TRIAL REGISTRATION: The COMTHECARE study is registered at Clinical Trials.gov, NCT04052074. Registered 9 August, 2019.
Asunto(s)
Cuidadores/psicología , Musicoterapia/normas , Neoplasias/terapia , Adulto , Protocolos Clínicos , Método Doble Ciego , Femenino , Servicios de Atención de Salud a Domicilio/normas , Humanos , Masculino , Musicoterapia/métodos , Neoplasias/psicología , Cuidados Paliativos/normasRESUMEN
BACKGROUND: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a "normal event" in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs. METHODS: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. INCLUSION CRITERIA: ≥18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. EXCLUSION CRITERIA: patient in distress ("unable to converse for a period of time"), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale. RESULTS: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%. CONCLUSIONS: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
Asunto(s)
Tamizaje Masivo/normas , Evaluación de Necesidades/estadística & datos numéricos , Cuidados Paliativos/métodos , Prevalencia , Anciano , Ansiedad/diagnóstico , Ansiedad/psicología , Depresión/diagnóstico , Depresión/psicología , Femenino , Humanos , Masculino , Tamizaje Masivo/métodos , Tamizaje Masivo/estadística & datos numéricos , Persona de Mediana Edad , Cuidados Paliativos/normas , Portugal , Encuestas y CuestionariosRESUMEN
BACKGROUND: Palliative medicine is an important component of care for patients with advanced cancer. Previous studies demonstrated that surgeons tend to underuse palliative care in comparison with medical services. In addition, little is known about the specific use of palliative care services among surgical oncology practices. Therefore, we designed and performed this study to evaluate the use of palliative care in medical and surgical oncology patients. STUDY DESIGN: A single-institution retrospective review of consecutive palliative care consultations within a large National Cancer Institute-designated comprehensive cancer center in 2016 to 2017 was conducted. RESULTS: We analyzed 120 patients (60 surgical and 60 medical). Patient demographics in the 2 groups were similar. The surgical oncology patients were more likely to undergo consultation for advanced care planning (32% vs 13%; p = 0.02). Medical oncology patients were more likely to undergo consultation for pain management (97% vs 62%; p < 0.001). Symptom assessment scores for medical patients more frequently demonstrated dyspnea and malignancy-related pain than in surgical patients. Also, palliative care recommendations and interventions for surgical patients more frequently included end-of-life discussions and transfer to the inpatient palliative care unit. For medical oncology patients, recommendations more often included changes in pain and bowel regimen medication. In addition, despite more frequent consults for advanced care planning in the surgical patients, code status was changed to DNR more frequently in the medical patient cohort. CONCLUSIONS: Surgical patients were less likely to undergo palliative care consultation for assistance with symptom management and more likely to undergo consultation for assistance with end-of-life discussions than were medical oncology patients. Advanced care planning and end-of-life discussions should be an area of focus in palliative care education for surgeons.
Asunto(s)
Pacientes Internos/estadística & datos numéricos , Oncología Médica/métodos , Neoplasias/cirugía , Cuidados Paliativos/normas , Derivación y Consulta/organización & administración , Cirujanos/normas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios RetrospectivosRESUMEN
BACKGROUND: In spite of the necessity of implementing spiritual care practices for cancer patients, there is no clear process in this regard in palliative care programs of the health system of countries. The present study was designed with the aim of developing a clinical practice guideline of spiritual care in cancer patients for oncology nurses in the current context. METHODS: This is a multi-method study which was conducted in five stages within the framework of the National Institute for Health and Care Excellence (NICE) guideline. A research committee consisting of four focal and 16 secondary members was formed. The stages included determining the scope of the study, developing guideline (a qualitative study and a systematic review, triangulation of the data, and producing a preliminary draft), consultation stage (validation of the guideline in three rounds of the Delphi study), as well as revision and publication stages. RESULTS: The clinical guideline of spiritual care with 84 evidence-based recommendations was developed in three main areas, including the human resources, care settings, and the process of spiritual care. CONCLUSIONS: We are hoping by applying this clinical guideline in oncology settings to move towards an integrated spiritual care plan for cancer patients in the context of our health system. Healthcare organizations should support to form spiritual care teams under supervision of the oncology nurses with qualified healthcare providers and a trained clergy. Through holistic care, they can constantly examine the spiritual needs of cancer patients alongside their other needs by focusing on the phases of the nursing process.