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1.
Palliat Support Care ; : 1-7, 2024 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-38736428

RESUMO

OBJECTIVES: In Chinese culture, family members are the main decision maker on end-of-life (EoL) issues for patients with advanced cancer. Yet little is known about Chinese families' confidence in making EoL decisions and its associated factors. This study aims to investigate the status and associated factors of Chinese family members' confidence in making EoL decisions for patients with advanced cancer. METHODS: This cross-sectional study used a convenience sample of 147 family members of patients with stage III or stage IV cancer from a tertiary cancer center in Guangzhou, China. The questionnaires included demographic information of patients and their family members, patients' EoL preferences, and the Chinese version of the Family Decision-Making Self-Efficacy (FDMSE) Scale. RESULTS: A total of145 family members (98.64%) completed the questionnaires. The average score of FDMSE was 3.92 ± 0.53. A multiple regression analysis showed that the factors associated with FDMSE included patients' duration of disease, health insurance, participation in EoL decision-making, the expression of unfilled wishes, and family members' employment status. SIGNIFICANCE OF RESULTS: Chinese family members were not confident enough in making EoL decisions for patients with advanced cancer. It is recommended to develop cultural-tailored advanced care planning models to clarify patient preferences and to enhance the family members' self-efficacy in making EoL decisions with or for patients with advanced cancer.

2.
Am J Hosp Palliat Care ; : 10499091241256629, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38780457

RESUMO

INTRODUCTION: End-stage liver disease (ESLD) presents a multifaceted challenge that encompasses not only physical but also emotional, psychological, and social dimensions. This study aims to explore the experiences of ESLD patients within the United States healthcare system. METHODS: Utilizing a convenience sampling methodology, 15 ESLD patients from a tertiary care hospital in the USA participated in semi-structured interviews between April 2023 and January 2024. Data analysis was conducted using MAXQDA 2023, employing a phenomenological approach to identify common themes. RESULTS: The study identified six primary themes: the significance of communication style in diagnosis delivery, the crucial role of family and social support, varied understanding and preferences for palliative care, diverse attitudes towards advanced care planning, preferences for coordinated healthcare experiences, and the emotional and psychological impact of ESLD. CONCLUSION: Our study underscores the complexity of ESLD patient care beyond medical treatment, highlighting the importance of clear communication, empathetic care, and the integration of family and palliative care services.

3.
BMC Geriatr ; 24(1): 402, 2024 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-38711019

RESUMO

INTRODUCTION: Advanced age is associated with life-threatening conditions at the end of life. Many of these persons at the end of their lives cannot make decisions because of the variable consciousness. They are able to make decisions and identify their care priorities, in a process called advanced care planning. So, an instrument is required for investigating ACP of the elderly population. This study was performed to determine the psychometric properties of the Persian version of the advanced care planning questionnaire(ACPQ) in elderly population referring to Tehran. METHOD: This methodological study was performed in five hospitals in 2021-2022. A total of 390 eligible elderlies were included. The psychometric assessment including translation, face validity, content validity were performed Alsothe exploratory factor analysis and confirmatory factor analysis were assessed. Reliability were done by internal consistency by assessing Cronbach alpha and stability was performed using test-retest. RESULTS: The face validity of the instrument was performed with minor changes. The content validity index for all of the items was above 0.79. In EFA four factors was extracted also CFA showed that the four-factor model has a good fit of the data (RMSEA: 0.04; NFI: 0.97 CFI: 0.99; IFI: 0.99; RFI: 0.96; AGFI: 0.87; GFI 0/90; standardized RMR: 0.02). Cronbach alpha and ICC were 0.72-0.94 and 0.85-0.96, respectively. CONCLUSION: The Persian version of the advance care planning questionnaire has desirable psychometric properties for measuring the advanced care planning of the elderly population. In addition, healthcare providers in Iran can employ this questionnaire in their practice and research.


Assuntos
Planejamento Antecipado de Cuidados , Psicometria , Humanos , Psicometria/métodos , Irã (Geográfico) , Idoso , Masculino , Feminino , Inquéritos e Questionários , Idoso de 80 Anos ou mais , Reprodutibilidade dos Testes , Pessoa de Meia-Idade
4.
J Palliat Med ; 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38608234

RESUMO

Background: Heart failure (HF) is a progressive, life-limiting illness for which palliative care (PC) is considered standard of care. Among patients that do receive PC, consultation tends to occur late in the illness course. Objective: Our primary aim was to examine patient factors associated with receiving PC in HF. Secondarily, we sought to determine factors associated with early PC encounters. Design: This was a retrospective cohort study of U.S. Veterans with prior hospitalization who died between January 1, 2011 and December 31, 2020. Setting/Subjects: Subjects were Veterans with HF who died with a prior admission to a Veterans Affairs hospital in the United States. Measurements: We calculated the time from PC encounter to death. We characterized HF patients who died without PC, with late PC (≤90 days before death), and with early PC (>90 days before death). Results: We identified 232,079 Veterans with a mean age of (76.5 ± 10.7) years. Within the cohort, 56.5% (n = 131,122) of Veterans died with no PC, 22.5% (n = 52,114) had PC <90 days before death, and 21.0% (n = 48,843) had PC >90 days before death. Veterans who died without PC tended to be younger with fewer comorbidities. Conclusions: While more than 20% of HF patients in our cohort had PC well in advance of death, more than half died without PC. PC involvement seemed to be driven by comorbidities rather than HF. Effective collaboration with Cardiology is needed to identify patients who would benefit from earlier PC involvement.

5.
World J Surg ; 48(1): 138-150, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-38686784

RESUMO

PURPOSE: One-year mortality is important for referrals to specialist palliative care or advance care planning (ACP). This helps optimize comfort for those who cannot be cured or have a lower life expectancy. Few studies have investigated the risk factors for 1-year mortality after gastrectomy for gastric cancer (GC). METHODS: A total of 1415 patients with gastric cancer (stages I-IV) who underwent gastrectomy between 2005 and 2020 were included. The patients were randomly assigned to the investigation group (n = 850) and validation group (n = 565) in a 3:2 ratio. In the investigation group, significant independent prognostic factors for predicting 1-year survival were identified. A scoring system for predicting 1-year mortality was developed which was validated in the validation group. RESULTS: Multivariate analysis revealed that the following seven variables were significant independent factors for 1-year survival: age ≧78, preoperative comorbidity, total gastrectomy, postoperative complication (Clavien-Dindo classification CD â‰§ 3a), stage III and IV, and R2 resection. While developing a 1-year mortality score (OMS), an age ≧78 was scored 2, preoperative comorbidity, total gastrectomy, and postoperative complication (CD â‰§ 3a) were scored 1, and stage III, IV, and R2-resection were scored 2, 3, and 3, respectively. OMS 3 had a sensitivity of 91% and a specificity of 66% for predicting death within 1 year. In the validation group, OMS 5 had a sensitivity of 55% and a specificity of 93% for predicting death within 1 year. CONCLUSIONS: OMS may provide important information and help surgeons select the timing of ACP in patients with GC.


Assuntos
Gastrectomia , Neoplasias Gástricas , Humanos , Neoplasias Gástricas/cirurgia , Neoplasias Gástricas/mortalidade , Gastrectomia/mortalidade , Gastrectomia/métodos , Gastrectomia/efeitos adversos , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Fatores de Risco , Prognóstico , Idoso de 80 Anos ou mais , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/mortalidade , Estadiamento de Neoplasias , Taxa de Sobrevida , Estudos Retrospectivos , Adulto , Fatores de Tempo
6.
G Ital Nefrol ; 41(1)2024 Feb 28.
Artigo em Italiano | MEDLINE | ID: mdl-38426684

RESUMO

The law 219/2017 is the first Italian law about advanced care planning (ACP). ACP is an important part of the therapeutic relationship between patients and doctors: thanks to ACP patients can think and discuss about end of life decisions, considering clinical aspects, but also psychological, cultural, social and ethical issues. Patients prepare themselves in advance because of the possibility of future cognitive impairment, can identify a surrogate decision maker and make end-life decisions according to their goals and values. End-stage kidney disease (ESRD) is often characterized by important symptoms, psychological suffering and social disadvantage, and patients affected by ESRD often have slow physical and cognitive decline. Despite this, access to palliative care is reduced for these patients as compared to patients affected by other end-stage organ failures. This is the reason why we want to explore the possibility of applying APC to ESRD patients. This pilot study, regarding three patients from the Dialysis Unit of ASST Crema in Italy, has been conducted to verify the applicability of the law 219/2017 in Dialysis Units. It shows that we have to deeply investigate this issue from both sanitary workers' and patients' and families' points of view. We need more studies with a larger number of patients and a longer period of follow-up, but we also need to teach sanitary workers how to approach APC and to teach people what APC is and why it's so important for everyone.


Assuntos
Planejamento Antecipado de Cuidados , Falência Renal Crônica , Assistência Terminal , Humanos , Diálise Renal/psicologia , Projetos Piloto , Falência Renal Crônica/terapia , Ansiedade , Assistência Terminal/psicologia
7.
J Hosp Palliat Care ; 27(1): 21-30, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38449829

RESUMO

Purpose: The purpose of this systematic review is to explore end-of-life (EOL) care planning and the impact of socioeconomic status (SES) among people who identify as Black or African American. Methods: The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) were used to guide and inform this systematic review process. The following academic electronic databases with publications that reflected the interdisciplinary fields related to the research objective were searched APA PsycINFO, CINHAL, PubMed, Scopus, and Social Work Abstracts. Results: After the authors conducted the search, 14 articles (from 13 studies) ultimately met the criteria for inclusion. The results substantiated significant concerns highlighted in previous literature regarding SES and its relation to EOL planning, but also revealed an absence of original work and interventions to increase engagement in EOL planning among Black and African American populations. Conclusion: Black individuals deserve an equitable EOL experience. Researchers, practitioners, and policymakers need to move towards advocacy and action to meet this important need.

8.
Glob Health Med ; 6(1): 70-76, 2024 Feb 29.
Artigo em Inglês | MEDLINE | ID: mdl-38450115

RESUMO

Japan's rapidly aging and high-mortality society necessitates a wider awareness and implementation of advance care planning. This Yamagata Cohort study investigated local residents' preferences for where they would like to spend their final days, and the underlying factors associated with those preferences with a self-administered questionnaire survey of local residents aged 40 years and over . Logistic regression analyses were used to assess those factors and, specifically, the choice of "Home" as the preferred place for end-of-life residence. Among the 10,119 responders, 61% chose their home as the most desirable place to spend their final days. The multiple logistic regression analysis showed that the independent factors associated with the choice of "Home" were: male, older age, not living with someone who needs care, not discussing the end of life, currently happy, struggling to live on current income, not feeling anxious or depressed, and current place of residence the same as their grandparents' birthplace. This suggested that reducing the burden of home care and addressing frequent emotional issues such as happiness and anxiety could increase the number of people choosing "Home". Open-ended comments indicated the importance of getting information and options, and discussing the choice of place for terminal care in light of individual backgrounds including having reservations about family. Support and systems are needed to understand what community residents consider important when deciding where to spend their final days, and to bridge the gap between their desired location and their actual end of life.

9.
Am J Hosp Palliat Care ; : 10499091241242811, 2024 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-38548621

RESUMO

Recognized as one of the deadliest cancers, pancreatic cancer underscores an urgent need for palliative care. We surveyed palliative care directors at all 65 National Cancer Institute (NCI) cancer centers to assess the utilization and timing of palliative care involvement in pancreatic cancer patients. 1) Does your palliative care team have a policy to get involved with every pancreatic cancer patient? a. Yes b. No 2) When palliative care is involved with pancreatic cancer patients, in what setting are you typically/primarily first asked to be involved? a. Early in the patient's treatment journey (focusing on symptom management) b. Later in the patient's treatment journey (focusing on end-of-life discussions and explaining hospice) All 65 NCI-designated centers responded, achieving 100% of the targeted sample. Among these centers, 64 lacked a policy for palliative care involvement with every pancreatic cancer patient. Additionally, 38 centers initiated intervention early, focusing on symptom management, while 15 centers started palliative care late in the treatment journey, emphasizing end-of-life discussions. Furthermore, 12 centers initiated intervention both early and late when treating pancreatic cancer. There is an increasing recognition among medical centers of palliative care's necessity for pancreatic cancer, with a rising trend toward early integration. Variation in the timing and emphasis of palliative care involvement remains. Future research should explore barriers to accessing palliative care and compare outcomes of early versus late intervention. By addressing these areas, healthcare providers can potentially improve outcomes for pancreatic cancer patients.

10.
Intern Med J ; 2024 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-38520171

RESUMO

BACKGROUND: Patients with a life-limiting illness (LLI) requiring hospitalisation have a high likelihood of deterioration and 12-month mortality. To avoid non-aligned care, we need to understand our patients' goals and values. AIM: To describe the association between the implementation of a shared decision-making (SDM) programme and documentation of goals of care (GoC) for hospitalised patients with LLI. METHODS: A prospective longitudinal interventional study of patients admitted to acute general medicine wards in an Australian tertiary hospital over 5 years was conducted. A SDM programme with a new GoC form, communication training and clinical support was implemented. The primary outcome was the proportion of patients with a documented person-centred GoC discussion (PCD). Clinical outcomes included hospital utilisation and 90-day mortality. RESULTS: 1343 patients were included. The proportion of patients with PCDs increased from 0% to 35.4% (adjusted odds ratio (aOR), 2.38; 95% confidence interval (CI), 2.01-2.82; P < 0.001). During this time, median hospital length of stay decreased from 8 days (interquartile range (IQR), 4-14) to 6 days (IQR, 3-11) (adjusted estimate effect, -0.38; 95% CI, -0.64 to -0.11; P = 0.005) and rapid response team activation from 28% to 13% (aOR, 0.87; 95% CI, 0.78-0.97; P value = 0.01). Documented treatment preference of high-dependency unit care decreased from 39.7% to 24.4% (aOR, 0.81; 95% CI, 0.73-0.89; P value < 0.001), and ward-based care increased from 31.9% to 55.1% (aOR, 1.24; 95% CI, 1.14-1.36; P value < 0.001). CONCLUSION: The implementation of a SDM programme was associated with increased documentation of person-centred GoC, changed patient treatment preference to lower intensity care and reduced hospital utilisation.

11.
BMC Geriatr ; 24(1): 269, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38504155

RESUMO

BACKGROUND: Frailty interventions such as Comprehensive Geriatric Assessment (CGA) can provide significant benefits for older adults living with frailty. However, incorporating such proactive interventions into primary care remains a challenge. We developed an IT-assisted CGA (i-CGA) process, which includes advance care planning (ACP). We assessed if, in older care home residents, particularly those with severe frailty, i-CGA could improve access to advance care planning discussions and reduce unplanned hospitalisations. METHOD: As a quality improvement project we progressively incorporated our i-CGA process into routine primary care for older care home residents, and used a quasi-experimental approach to assess its interim impact. Residents were assessed for frailty by General Practitioners. Proactive i-CGAs were completed, including consideration of traditional CGA domains, deprescribing and ACP discussions. Interim analysis was conducted at 1 year: documented completion, preferences and adherence to ACPs, unplanned hospital admissions, and mortality rates were compared for i-CGA and control (usual care) groups, 1-year post-i-CGA or post-frailty diagnosis respectively. Documented ACP preferences and place of death were compared using the Chi-Square Test. Unplanned hospital admissions and bed days were analysed using the Mann-Whitney U test. Survival was estimated using Kaplan-Meier survival curves. RESULTS: At one year, the i-CGA group comprised 196 residents (severe frailty 111, 57%); the control group 100 (severe frailty 56, 56%). ACP was documented in 100% of the i-CGA group, vs. 72% of control group, p < 0.0001. 85% (94/111) of severely frail i-CGA residents preferred not to be hospitalised if they became acutely unwell. For those with severe frailty, mean unplanned admissions in the control (usual care) group increased from 0.87 (95% confidence interval ± 0.25) per person year alive to 2.05 ± 1.37, while in the i-CGA group they fell from 0.86 ± 0.24 to 0.68 ± 0.37, p = 0.22. Preferred place of death was largely adhered to in both groups, where documented. Of those with severe frailty, 55% (62/111) of the i-CGA group died, vs. 77% (43/56) of the control group, p = 0.0013. CONCLUSIONS: Proactive, community-based i-CGA can improve documentation of care home residents' ACP preferences, and may reduce unplanned hospital admissions. In severely frail residents, a mortality reduction was seen in those who received an i-CGA.


Assuntos
Planejamento Antecipado de Cuidados , Fragilidade , Humanos , Idoso , Fragilidade/diagnóstico , Avaliação Geriátrica , Estudos Longitudinais , Hospitalização
12.
Front Public Health ; 12: 1329916, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38371241

RESUMO

Objective: Advance directives (ADs) provide an opportunity for patients to enhance the quality of their end-of-life care and prepare for a dignified death by deciding treatment plans. The purpose of this study was to explore the multiple factors that influence the advance directives completion among older adults in South Korea. Methods: This was a secondary analysis of a cross-sectional study of 9,920 older adults. The differences in ADs based on subjects' sociodemographic characteristics, health-related characteristics, and attitude toward death were tested using the chi-squared and t-test. A multinomial logistic regression model was used to identify the influencing factor of ADs. Results: The number of chronic diseases, number of prescribed medications, depression, insomnia, suicide intention, and hearing, vision, or chewing discomfort were higher in the ADs group compared to the non-ADs group. The influencing factors of the signing of ADs included men sex, higher education level, exercise, death preparation education, lower awareness of dying-well, and experience of fracture. Conclusion: Information dissemination regarding ADs should be promoted and relevant authorities should consider multiple options to improve the physical and psychological health of older adults, as well as their attitude toward death to increase the ADs completion rate.


Assuntos
Diretivas Antecipadas , Assistência Terminal , Masculino , Humanos , Idoso , Estudos Transversais , Diretivas Antecipadas/psicologia , Pacientes , Atitude
13.
Aust Crit Care ; 37(4): 520-529, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38350752

RESUMO

INTRODUCTION: Prognosis in oncology has improved with early diagnosis and novel therapies. However, critical illness continues to trigger clinical and ethical dilemmas for the treating oncology and intensive care unit (ICU) doctors. OBJECTIVES: The objective of this study was to investigate the perceptions of oncology and ICU doctors in managing critically ill cancer patients. METHODS: A cross-sectional web-based survey exploring the management of a fictitious acutely deteriorating case vignette with solid-organ malignancy. The survey weblink was distributed between May and July 2022 to all Australian oncology and ICU doctors via newsletters to the members of the Medical Oncology Group of Australia, the Australian and New Zealand Intensive Care Society, and the College of Intensive Care Medicine inviting them to participate. The weblink was active till August 2022. The six domains included patient prognostication, advanced care plan, collaborative management, legal/ethical/moral challenges, ICU referral, and protocol-based ICU admission. The outcomes were reported as the level of agreement between oncology and ICU doctors for each domain/question. RESULTS: 184 responses (64 oncology and 120 ICU doctors) were analysed. Most respondents were specialists (78.1% [n = 50] oncology, 78.3% [n = 94] ICU doctors). Oncology doctors more commonly reported managing cancer patients with poor prognosis than ICU doctors (p < 0.001). Oncology doctors less commonly referred such patients for ICU admission (29.7% [n = 19] vs. 80.8% [n = 97], p < 0.001; odds ratio [OR] = 0.07; 95% confidence interval [CI]: 0.03-0.16) and infrequently encountered patients with prior goals of care (GOC) in medical emergency team escalations (40.6% [n = 26] vs. 86.7% [n = 104]; p < 0.001; OR = 0.06; 95% CI: 0.02-0.15; p < 0.001). Oncology doctors were less likely to discuss GOC during medical emergency team calls or within 24 h of ICU admission. More oncology doctors than ICU doctors thought that training rotation in the corresponding speciality group was beneficial (56.3% [n = 36] vs. 31.7% [n = 38]; p = 0.012; OR = 2.07; 95% CI: 1.02-4.23; p = 0.045). CONCLUSION: Oncology doctors were less likely to encounter acute patient deterioration or establish timely GOC for such patients. Oncology doctors believed that an ICU rotation during their training may have helped manage challenging situations.


Assuntos
Neoplasias , Humanos , Estudos Transversais , Austrália , Neoplasias/terapia , Feminino , Masculino , Inquéritos e Questionários , Unidades de Terapia Intensiva , Pessoa de Meia-Idade , Adulto , Oncologia , Atitude do Pessoal de Saúde , Cuidados Críticos , Admissão do Paciente
14.
Stud Health Technol Inform ; 310: 609-613, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269881

RESUMO

While advanced care planning (ACP) is an essential practice for ensuring patient-centered care, its adoption remains poor and the completeness of its documentation variable. Natural language processing (NLP) approaches hold promise for supporting ACP, including its use for decision support to improve ACP gaps at the point of care. ACP themes were annotated on palliative care notes across four annotators (Fleiss kappa = 0.753) and supervised models trained (Huggingface models bert-base-uncased and Bio_ClinicalBERT) using 5-fold cross validation (F1=0.8, precision=0.75, recall=0.86, any theme). When applied across the full note corpus of 12,711 notes, we observed variability in documentation of ACP information. Our findings demonstrate the promise of NLP approaches for informatics-based approaches for ACP and patient-centered care.


Assuntos
Planejamento Antecipado de Cuidados , Processamento de Linguagem Natural , Humanos , Documentação , Cuidados Paliativos , Assistência Centrada no Paciente
15.
BMC Med Ethics ; 25(1): 7, 2024 01 06.
Artigo em Inglês | MEDLINE | ID: mdl-38184541

RESUMO

BACKGROUND: On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person's autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. METHODS: A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). RESULTS: Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians' opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. CONCLUSIONS: Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations.


Assuntos
Transtornos Cognitivos , Demência , Humanos , Conhecimentos, Atitudes e Prática em Saúde , Consentimento Livre e Esclarecido , Diretivas Antecipadas , Itália
16.
Transplant Cell Ther ; 30(4): 402.e1-402.e12, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38262530

RESUMO

Chimeric Antigen Receptor T-cell (CAR-T) therapy has revolutionized the treatment of patients with hematologic malignancies, yet treatment may coincide with the potential for life-threatening toxicities. Currently, no studies have investigated how oncologists communicate with patients about CAR-T therapy or what patients and their caregivers want to know prior to consenting for CAR-T therapy. This study characterizes the content of oncologist communication with patients and caregivers about the risks and benefits of CAR-T therapy and explore the information preferences of patients and their caregivers about CAR-T therapy. We conducted a multimethod study of 20 patients with hematologic malignancies referred for CAR-T therapy at the Massachusetts General Hospital and 10 caregivers. We audio recorded the initial outpatient visit with the oncologist to review and sign consent for CAR-T therapy. We subsequently surveyed patients and caregivers about information gaps that remained after consent. We then interviewed patients and caregiver about their perceptions of oncologist communication and information preferences after the consent visit, 1 month, and 3 months post-CAR-T therapy treatment. Qualitative data analysis was conducted using the framework approach. Six major themes regarding communication about CAR-T therapy were identified: (1) oncologists create a narrative of power and innovation about CAR-T therapy, (2) oncologists set clear expectations regarding CAR-T therapy, (3) oncologists preferentially discuss positive treatment outcomes and less frequently address treatment failures or uncertainties, (4) oncologists couple their discussion about risks of CAR-T therapy with assurances about risk mitigation strategies, (5) oncologists engage in empathetic communication throughout the consent visit, (6) patients and caregivers vary in their preferences regarding communication about CAR-T therapy but largely favor a positive discourse during the consent visit and (7) patients who completed CAR-T therapy and their caregivers report significant knowledge gaps during and after treatment. Overall, patients and caregivers felt well informed about CAR T-therapy yet identified communication gaps regarding, advanced care planning, treatment failure and treatment toxicities. A predominantly positive discourse between patients, caregivers, and oncologists around CAR-T therapy leaves patients and caregivers with significant knowledge gaps about negative outcomes. Further research is needed to help oncologists communicate about treatment uncertainties and help patients and their caregivers prepare for negative outcomes of CAR-T therapy.


Assuntos
Neoplasias Hematológicas , Neoplasias , Receptores de Antígenos Quiméricos , Humanos , Receptores de Antígenos Quiméricos/uso terapêutico , Neoplasias/terapia , Comunicação , Linfócitos T
17.
Am J Hosp Palliat Care ; 41(2): 173-178, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37248859

RESUMO

Background: Physician communication during goals of care (GOC) discussions impact experiences for patients and families at end-of-life (EOL). Simulation allows training in a safe environment where feedback from simulated patients (SP), clinicians, and self-reflection can be incorporated. Objectives: To determine if multisource feedback from SP scenarios enriches feedback provided to trainees. Design: Fourth-medical students participated in two SP GOC discussions during an advanced care planning (ACP) curriculum. Students received feedback from SPs and faculty and completed a video review with self-reflection. Setting and Subjects: Forty-seven fourth-year medical students at the University of Cincinnati College of Medicine participated in the curriculum from 2019-2021. Measurements: An inductive thematic analysis of the narrative data was performed examining all sources of feedback from the SP sessions. Results: Six themes emerged from the feedback: the warning shot: words to say and why it helps; acknowledging emotion: verbal vs non-verbal responses; organization: necessity of a clear path; body language: adding to and distracting from the conversation; terminology to avoid: what jargon encompasses and how it impacts patients; and silence: perceived importance by everyone. SP feedback focused on the personal emotional impact of a student's word choice and body language. Faculty feedback focused on specific learning points through examples from the conversation and expanded to hypothetical scenarios. Student self-reflection after video review allowed students to see challenges that they did not notice while immersed in the encounter. Conclusion: Multisource feedback from simulated GOC discussions provides unique insights for students to guide their development in leading difficult conversations.


Assuntos
Educação de Graduação em Medicina , Estudantes de Medicina , Humanos , Retroalimentação , Comunicação , Planejamento de Assistência ao Paciente , Estudantes de Medicina/psicologia , Aprendizagem
18.
Am J Hosp Palliat Care ; 41(2): 187-192, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37159467

RESUMO

BACKGROUND: Previous studies have noted that participation in advanced care planning (ACP) and end-of-life (EOL) discussions remain low among Latino communities. Various studies have found that interventions within Latino communities can positively improve engagement in ACP, however, minimal research exists regarding patient satisfaction of ACP discussions with healthcare providers outside of preorganized educational interventions. Our study aims to understand how conversations about ACP are perceived by Latino patients in a primary care setting. METHODS: Subjects were identified from the institution's family medicine clinic from October 2021 to October 2022. Participants were those over the age of 50 who identified as Latino and were available at the clinic on the day of survey administration. An 8-question, 5-point, Likert scale survey assessed perceptions about ACP planning and gauged satisfaction of conversations with health care providers. The survey concluded with a multiple-choice question inquiring about individuals whom patients have spoken to regarding ACP/EOL wishes. Survey data was gathered through Qualtrics. RESULTS: Of the 33 patients, the majority have at least somewhat thought about their EOL wishes (avg = 3.48/5). Most usually felt they were given enough time with their doctor (avg = 4.12/5) and comfortable speaking about ACP and EOL decisions (avg = 4.55/5). Generally, participants felt somewhat happy with how their doctor has spoken about ACP/EOL care (avg = 3.24/5). However, patients only felt a little to somewhat satisfied with the explanation of ACP/EOL from providers (avg = 2.82/5) and a little to somewhat confident in having the proper forms in place (avg = 2.76/5). Religious officials were a little to somewhat important to these conversations (avg = 2.55/5). Overall, patients have discussed ACP more frequently with family members and friends than health care providers, lawyers, or religious leaders. CONCLUSIONS: The initial data demonstrates that many Latino patients are engaging in ACP conversations, both with healthcare providers and loved ones. Patients largely feel comfortable discussing EOL wishes with their doctor suggesting a trustful relationship. However, patients are only somewhat happy with these ACP conversations. Our study highlights a need for enhanced ACP education to improve satisfaction and confidence in formal documentation. Physicians should continue to engage and individualize ACP discussions to increase EOL preparedness among Latino patients.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Morte , Hispânico ou Latino
19.
Br J Community Nurs ; 29(1): 26-31, 2024 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-38147447

RESUMO

The advancement in the knowledge and skills required by the Specialist Community Practitioner District Nurse (SCPDN) is integral in supporting end-of-life care. An integrated and multi-disciplinary team approach is pivotal for high quality patient care delivery, which involves individuals and their significant others in decision-making at a sensitive time. Advanced care planning and the use of therapeutic communication by the SCPDN can help to support autonomy in individuals during uncertain times, enabling them to express their end-of-life wishes. The SCPDN, guided by the evidence base, must provide holistic care and manage palliation while ensuring the patient is at the centre of all decisions.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Morte , Pacientes
20.
Palliat Med Rep ; 4(1): 344-349, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38155911

RESUMO

Background: Specialist-level palliative care in the final days does not allow time to alleviate symptoms and suffering. This analysis examined the change in the time from initial specialty-level palliative care to death among Veterans with heart failure. Methods: This retrospective cohort study examined Veterans with a diagnosis of heart failure (HF) who died between 2011 and 2021. We examined the decedents from each year as a separate cohort. The primary outcome was time from specialty-level palliative care (SPC) encounter to death in the year death occurred. Results: Of the cohort (n = 232,079), 56.5% did not receive SPC. Specialist-level palliative care >90 days before death more than doubled from 10.1% (2011) to 26.2% (2021), and Specialist-level palliative care in the last day of life was cut from 2.5% to 0.9%. Conclusion: For Veterans with HF, specialist-level palliative care moved earlier in the disease course and has a substantial growth opportunity.

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