Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 2.054
Filtrar
Mais filtros











Intervalo de ano de publicação
1.
Artigo em Inglês | MEDLINE | ID: mdl-39089725

RESUMO

OBJECTIVE: The study aimed to assess outcomes in patients undergoing liver biopsy for metastatic cancer, focusing on mortality rates and chemotherapy following their biopsy. METHODS: Hospital Episode Statistics data from 2010 to 2019 identified 30 992 patients with metastatic cancer who underwent percutaneous liver biopsy. Primary outcomes included 14-day and 30-day mortality rates, as well as the proportion receiving chemotherapy within 6 months. RESULTS: 30 992 patients were studied (median age of 69 (IQR 59-74) years, 52% female). 28% underwent inpatient biopsy with 8% dying within 14 days and 26% within 30 days. Outpatient biopsies had lower mortality rates: 2.2% at 14 days and 8.6% at 30 days.30-day mortality was associated with: inpatient biopsy (OR 3.5 (95% CI 3.26 to 3.76)) and increasing comorbidity (Charlson score 1-4: 1.21 (95% CI 1.11 to 1.32)); but negatively with all ages under 70 (eg, for 18-29 years 0.35 (95% CI 0.20 to 0.63)) and biopsy at a radiotherapy centre (0.88 (95% CI 0.82 to 0.95)).46% of patients received chemotherapy within 6 months of biopsy (53% with outpatient biopsies but only 33% with inpatient biopsies). Receiving chemotherapy was associated with: all ages under 70 (eg, 18-29 years 3.3 (95% CI 2.62 to 5.30)), female sex (1.06 (95% CI 1.01 to 1.11)) and medium (1.13 (95% CI 1.04 to 1.22) and high (1.49 (95% CI 1.38 to 1.62)) volume liver biopsy providers; but negatively with inpatient biopsy (0.45 (95% CI 0.43 to 0.48)) and increasing comorbidity (Charlson score 1-4: 0.85 (95% CI 0.79 to 0.91)). CONCLUSIONS: Mortality rates following liver biopsy for metastatic cancer are notably higher among patients undergoing emergency inpatient procedures. Clinicians should carefully weigh the risks and benefits of biopsy in elderly, comorbid or poor performance status patients. Multidisciplinary approaches involving palliative care may aid in decision-making for these patients.

2.
Palliat Med ; : 2692163241265231, 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39092850

RESUMO

BACKGROUND: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. AIM: To identify factors influencing where people with advanced dementia die. DESIGN AND DATA SOURCES: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. RESULTS: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. CONCLUSION: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.

3.
Int J Circumpolar Health ; 83(1): 2378581, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-39092567

RESUMO

In Canada, most people prefer to die at home. However, the proportion of deaths that occur in hospital has increased over time. This study examined mortality rates and proportionate mortality in Innu communities in Labrador, and compared patterns to other communities in Labrador and Newfoundland. We conducted a cross-sectional ecological study with mortality data from the vital statistics system. This included information about all deaths in Newfoundland and Labrador from 1993 to 2018. We used descriptive statistics and rates to examine patterns by age, sex, cause and location. During the 2003 to 2018 period the leading cause of death in the Innu communities (excluding external causes) was cancer, followed by circulatory disease and respiratory disease. Between 1993 and 2018, there was a lower percentage of hospital deaths and a higher percentage of at home deaths in Innu communities than in the rest of the province. The majority of deaths among Innu were due to cancer and chronic diseases. We found a higher percentage of at home deaths in Innu communities compared to the rest of the province.


Assuntos
Causas de Morte , Mortalidade , Neoplasias , Humanos , Terra Nova e Labrador/epidemiologia , Estudos Transversais , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Adolescente , Mortalidade/tendências , Lactente , Criança , Adulto Jovem , Pré-Escolar , Neoplasias/mortalidade , Idoso de 80 Anos ou mais , Recém-Nascido , Doenças Respiratórias/mortalidade , Doenças Cardiovasculares/mortalidade , Mortalidade Hospitalar/tendências , Regiões Árticas/epidemiologia , Doença Crônica/mortalidade , Doença Crônica/epidemiologia
4.
BMC Palliat Care ; 23(1): 200, 2024 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-39098890

RESUMO

BACKGROUND: Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evidence. Randomised controlled trials (RCTs) are the gold standard for treatment efficacy, while total health care costs offer a comprehensive measure of resource use. In the sole review of RCTs for non-cancer patients, palliative care reduced hospitalisations and emergency department visits but its effect on total health care costs was not assessed. The aim of this study is to review RCTs to determine the difference in costs between a palliative care approach and usual care in adult non-cancer patients with a life-limiting illness. METHODS: A systematic review using a narrative synthesis approach. The protocol was registered with PROSPERO prospectively (no. CRD42020191082). Eight databases were searched: Medline, CINAHL, EconLit, EMBASE, TRIP database, NHS Evidence, Cochrane Library, and Web of Science from inception to January 2023. Inclusion criteria were: English or German; randomised controlled trials (RCTs); adult non-cancer patients (> 18 years); palliative care provision; a comparator group of standard or usual care. Quality of studies was assessed using Drummond's checklist for assessing economic evaluations. RESULTS: Seven RCTs were included and examined the following diseases: neurological (3), heart failure (2), AIDS (1) and mixed (1). The majority (6/7) were home-based interventions. All studies were either cost-saving (3/7) or cost-neutral (4/7); and four had improved outcomes for patients or carers and three no change in outcomes. CONCLUSIONS: In a non-cancer population, this is the first systematic review of RCTs that has demonstrated a palliative care approach is cost-saving or at least cost-neutral. Cost savings are achieved without worsening outcomes for patients and carers. These findings lend support to calls to increase palliative care provision globally.


Assuntos
Cuidados Paliativos , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Cuidados Paliativos/economia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Adulto , Redução de Custos/métodos , Redução de Custos/estatística & dados numéricos , Análise Custo-Benefício/métodos
5.
Support Care Cancer ; 32(9): 574, 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39107508

RESUMO

PURPOSE: Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. METHODS: The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. RESULTS: The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16-0.41, P < 0.001). CONCLUSIONS: PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/organização & administração , Masculino , Feminino , Estudos Retrospectivos , Assistência Terminal/métodos , Taiwan , Idoso , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Qualidade da Assistência à Saúde , Mortalidade Hospitalar , Neoplasias/terapia , Adulto , Modelos Logísticos , Estudos de Coortes
6.
J Palliat Med ; 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39093919

RESUMO

Background and Objectives: Spiritual care is an essential component of care for the terminally ill, because of its potential to positively impact patient perception of quality of life and dignity. However, it continues to be the least cultivated or even most overlooked aspect of palliative care and end of life. We performed a methodological review using bibliometric analysis to provide a holistic view of the scientific output published on this topic in the literature at the same time outlining present perspectives and research trends. Methods: In accordance with the BIBLIO checklist for reporting the bibliometric reviews of the biomedical literature, pertinent articles were retrieved from the Web of Science (WOS) database. The search string included "spiritual care," "end of life," and their synonyms. The VOSviewer (version 1.6.17) software was used to conduct comprehensive analyses. Semantic and research networks, bibliographic coupling, and journal analysis were examined. Results: A total of 924 articles were identified in WOS, and 842 were retrieved. An increasing trend in the number of publications is observed from 1981 to date, with a peak in the 2019-2021 timeframe. Most articles focused on palliative care, spirituality, spiritual care, religion, end of life, and cancer. The Journal of Pain and Symptom Management contributed the highest number of published documents, while the Journal of Palliative Medicine was the top-cited journal. The highest number of publications originated from collaborations of authors from the United Kingdom, the United States, and Australia. Conclusion: The remarkable increase in the number of publications on spiritual care observed in the years of the COVID-19 pandemic likely reflected global concerns, reasserting the importance of prioritizing spiritual care for whole-person palliation. Spiritual care is integrated with palliative care, in line with the latter's holistic nature and the recognition of spirituality as a fundamental aspect of end-of-life care. Nurses and chaplains exhibited more involvement in palliative-spiritual care than physicians reflecting the belief that chaplains are perceived as specialized providers, and nurses, owing to their direct exposure to spiritual suffering and ethos, are deemed suitable for providing spiritual care.

7.
Sleep Med Clin ; 19(3): 497-507, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39095146

RESUMO

Palliative care is important for many patients who require noninvasive ventilation. The particular needs of patients with neuromuscular disease and chronic obstructive pulmonary disease are explored. Advance care planning is explored with tips for undertaking this important communication task. Brief comments regarding symptom burden, weaning, voluntary assisted dying, and self-care are included.


Assuntos
Ventilação não Invasiva , Cuidados Paliativos , Humanos , Ventilação não Invasiva/métodos , Cuidados Paliativos/métodos , Doenças Neuromusculares/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Planejamento Antecipado de Cuidados
8.
J Am Geriatr Soc ; 2024 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-39180221

RESUMO

BACKGROUND: Palliative care improves the quality of life for people with life-limiting conditions, which are common among older adults. Despite the Veterans Health Administration (VA) outpatient palliative care expansion, most research has focused on inpatient palliative care. This study aimed to compare veteran characteristics and hospice use for palliative care users across care settings (inpatient vs. outpatient) and dose (number of palliative care encounters). METHODS: This national cohort included veterans with any VA palliative care encounters from 2014 through 2017. We used VA and Medicare administrative data (2010-2017) to describe veteran demographics, socioeconomic status, life-limiting conditions, frailty, and palliative care utilization. Specialty palliative care encounters were identified using clinic stop codes (353, 351) and current procedural terminology codes (99241-99245). RESULTS: Of 120,249 unique veterans with specialty palliative care over 4 years, 67.8% had palliative care only in the inpatient setting (n = 81,523) and 32.2% had at least one palliative care encounter in the outpatient setting (n = 38,726), with or without an inpatient palliative care encounter. Outpatient versus inpatient palliative care users were more likely to have cancer and less likely to have high frailty, but sociodemographic factors including rurality and housing instability were similar. Duration of hospice use was similar between inpatient (median = 37 days; IQR = 11, 112) and outpatient (median = 44 days; IQR = 14, 118) palliative care users, and shorter among those with only one palliative care encounter (median = 18 days; IQR = 5, 64). CONCLUSIONS: This national evaluation provides novel insights into the care setting and dose of VA specialty palliative care for veterans. Among veterans with palliative care use, one-third received at least some palliative care in the outpatient care setting. Differences between veterans with inpatient and outpatient use motivate the need for further research to understand how care settings and number of palliative care encounters impact outcomes for veterans and older adults.

9.
Semin Oncol Nurs ; : 151697, 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39097463

RESUMO

OBJECTIVES: Concordance of preferences for end-of-life care regarding patients between patients with advanced cancer and family caregivers can improve the likelihood of honoring dying patients' wishes. However, there is a dearth of knowledge in mainland China. The purpose of this study was to examine patient-family caregiver concordance about patients' life-sustaining treatment preferences and associated factors among patients with advanced cancer in China. METHODS: From September 2019 to December 2021, a convenience sample of 406 dyads of advanced cancer patient-family caregiver were recruited from 2 tertiary hospitals in Wuhan, China. Participants completed a questionnaire about patient's preferences for life-sustaining treatment, respectively. The concordance was assessed by percent agreement and kappa coefficients. Associated factors were identified by univariate analysis and binary logistic regression. RESULTS: The average concordance rate on the preferences for life-sustaining treatment was 56.1%, ranging from 52.9% to 59.3%. Factors associated with a higher level of patient-family caregiver concordance were following: patients who were married, whose educational levels were at college or above, who had not been informed of diagnosis by a physician, who had been informed of the effects and side effects of related drugs by a physician, and who cared for a seriously ill family member or friend and caregivers whose educational level were primary or below. CONCLUSIONS: The patient-family caregiver concordance about patients' life-sustaining treatment preferences among patients with advanced cancer was poor. Patients' and caregivers' understanding of life-sustaining treatment and its efficacy in end-of-life should be facilitated. Relevant conversation should be encouraged between patients and caregivers, thus providing value-concordant end-of-life care for patients with cancer. IMPLICATIONS FOR NURSING PRACTICE: Health professionals need to carry out advanced care planning in oncology departments on mainland China to encourage patients and caregivers to discuss patients' end-of-life care preferences. Facilitating patients' and caregivers' understanding of life-sustaining treatment preferences may help improve the patient-caregiver concordance on life-sustaining treatment preferences among patients with advanced cancer.

10.
Palliat Med Rep ; 5(1): 324-330, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39144136

RESUMO

Background: There is a lack of specific studies on the management of infections in patients receiving palliative care (PC) in the final stages of life and during the active process of death, related to specific nursing care. There is clinical and social importance as patients in PC represent a vulnerable population, and adequate management of infections is crucial to improve quality of life and the experience of comfort. Objective: This study analyzed how infections are managed in patients undergoing PC at the end-of-life and in the active process of death in two hospital health services. Design: This is an observational, analytical, and retrospective study. Settings: Data collection took place in two hospitals that assist individuals who are hospitalized under PC, located in Brazil, in a city in the interior of the state of São Paulo. Measurements and Results: The sample consisted of 113 medical records, in which the oncological diagnosis was the most prevalent. There was a predominance of infection diagnoses based on the patient's clinical symptoms, the main focus being the pulmonary, in individuals at the end-of-life. The management of infection in the study sample occurred through care and procedures that generate physical discomfort, however aiming at relieving symptoms. Such findings must be documented, as they invite us to reflect on our practical attitudes and what it means to be comfortable for these people, making it possible to incorporate this information into the design of interventions focused on enhancing the experience of comfort.

11.
Artigo em Inglês | MEDLINE | ID: mdl-39173896

RESUMO

CONTEXT: While the evidence supporting the benefits of integration of palliative care into cancer care for patients and informal caregivers is growing, it poses challenges for hematological cancer patients due to rapidly changing disease trajectories, uncertain prognosis, and diverse care needs. OBJECTIVES: This systematic review aims to provide an overview of the intervention components, the targeted outcomes, the effectiveness in improving patient and informal caregiver outcomes, and the implementation into clinical practice. METHODS: We systematically searched PubMed (MEDLINE), EMBASE, CENTRAL, PsycINFO, and CINAHL in March 2023. The studies included described interventions in palliative care, with multiple components, targeting patients with hematological cancer and/or their informal caregivers, and producing primary data on effectiveness or implementation. Quality was assessed using the QualSyst tool. RESULTS: We identified 19 reports on 16 different palliative care interventions, including 4 quasi-randomized controlled trials. These interventions were provided by secondary and tertiary palliative care providers in a hospital setting. Tertiary interventions significantly improved the most common patient outcomes, including pain, quality of life, symptom burden, depression, and anxiety. Meanwhile, secondary interventions were feasible and well-accepted by healthcare professionals and patients. Despite limited inclusion of informal caregivers, the results indicated significant improvements in quality of life and depression. CONCLUSION: While palliative care interventions are found to improve patient outcomes, future research is needed on the effectiveness of secondary palliative care interventions, integrating primary palliative care, and more reliable and frequent implementation measurements. More focus on informal caregivers and resource allocation based on patient needs is warranted.

12.
World Neurosurg ; 2024 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-39214291

RESUMO

Glioblastoma represents the most common aggressive primary brain tumour in adults. Changes in cognition, personality and in behaviour of patient as well as side effects of treatments cause unique challenges for providing care and may impact caregiver burden in different ways. This retrospective study included 45 patients with diagnosis of glioblastoma treated between January 2022 and June 2023 in two Neurosurgical Departments. We investigated the quality of life and the experiences of glioblastoma patients caregivers on the end-of-life phase using a validated questionnaire consisting of 38 questions related to the caregiver's view of the patient's terminal phase and another 26 questions regarding caregiver's experiences and emotions during the last three months of the patient's life. Fatigue, reduced consciousness and sadness were the most common patient's symptoms reported by their caregivers. The reported quality of life of caregivers was low and superimposable to the quality of life that they attributed to the patients. The burnout symptoms and feelings of insufficient information emphasize the urgent need for psychological support and training dedicated to caregivers. The end-of-life phases of glioblastoma patient may represent a critical factor that significantly affects not only the patient but also caregiver burden, caregiving tasks, and caregiver time. A urgent multidisciplinary support program is needed to face and improve caregivers burden.

13.
J Med Internet Res ; 26: e50217, 2024 Aug 16.
Artigo em Inglês | MEDLINE | ID: mdl-39151167

RESUMO

BACKGROUND: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. OBJECTIVE: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. METHODS: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. RESULTS: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. CONCLUSIONS: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.


Assuntos
Planejamento Antecipado de Cuidados , Pesquisa Qualitativa , Humanos , Cuidados Paliativos , Registros Eletrônicos de Saúde , Masculino , Feminino , Inglaterra , Reino Unido , Entrevistas como Assunto
14.
Healthcare (Basel) ; 12(16)2024 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-39201143

RESUMO

BACKGROUND: Spiritual care for patients at the end of life is an important element in their holistic care. The aim of this study is to assess the opinions of cancer patients with limited prognosis about the importance of faith in fighting illness and the factors contributing to a better adjustment to illness and to their self-reconciliation and spiritual well-being. MATERIAL AND METHODS: This study used a specially designed questionnaire for cancer patients with limited prognosis. The 30 respondents were patients with an estimated prognosis of less than 1 month, cared for in a unit with palliative and home care beds. RESULTS: The patients emphasized the importance of family as a supporter in the fight against disease (90%), followed by faith (66.7%) and a care team (63.3%). The most common concerns expressed were related to the course of their disease, family distress, fear of death, and the Russian-Ukrainian war. CONCLUSION: Family and faith represent important factors in supporting and caring for a patient at the end-of-life. Patients who felt spiritually at peace and were supported in their faith by family and a priest had a better spiritual state.

15.
Artigo em Inglês | MEDLINE | ID: mdl-39142495

RESUMO

CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. OBJECTIVES: To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. METHODS: We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. RESULTS: Across N = 124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F = 9.26, P = 0.003). Preparation for EOL fully mediated this association. CONCLUSION: Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement.

16.
BMC Geriatr ; 24(1): 700, 2024 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-39182044

RESUMO

BACKGROUND: Innovative small-scale facilities for dementia focus on providing quality of life and maintaining the functional abilities of residents while offering residents a home for life. To fulfill the home-for-life principle, palliative care approaches are necessary to maintain quality of life in these facilities. Few studies have reported on how palliative care is provided to residents in small-scale facilities. The aim of our review is to determine the extent to which palliative care approaches are reported in small-scale facilities. METHODS: A scoping review of the literature using recommended methods from the Joanna Briggs Institute. Four databases, CINAHL, PubMed, PsycINFO, and Web of Science, were searched for studies published from 1995 to 2023. One reviewer completed the title, abstract and full-text screening and data extraction; two additional team members piloted the screening and extraction process and met with the main reviewer to make decisions about article inclusion and ensure consistency and accuracy in the review process. The extracted data was open-coded and analyzed using thematic analysis. The data was then synthesized into themes using palliative care domains for dementia. RESULTS: Of the 800 articles obtained in the search, only ten met the inclusion criteria: six from Japan, two from the Netherlands, and one each from Austria and the United States. In most small-scale facilities, palliative care is important, with facilities prioritizing family involvement and person-centred care, minimizing resident discomfort and enhancing residents' remaining abilities until the end of life. The included studies did not discuss palliative care policies or professional staff training in depth. CONCLUSIONS: This study provides an overview of the literature on palliative care in small-scale facilities for individuals with dementia. Most facilities focus on residents' wishes at the end of life to enhance comfort and provide a home-like environment. However, more research is needed to further understand the quality of palliative care approaches in these homes.


Assuntos
Demência , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Demência/terapia , Qualidade de Vida
17.
J Palliat Med ; 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39023051

RESUMO

Background and Purpose: Patients with advanced noncancer diseases or advanced cancer diseases may experience similar symptom burdens during the end of their lives. This study aimed to evaluate the differences in receiving hospice care service and in receiving aggressive end-of-life care between patients who died of cancer diseases and those who died of noncancer diseases. Methods: This cross-sectional population-based study used data from the Taiwan National Health Insurance Research Database. Subjects who died of cancers or noncancer diseases from 2010 through 2019 were analyzed to identify the information on patient's characteristics, receipt of hospice care service, receipt of cardiopulmonary resuscitation (CPR) during the last hospitalization, and receipt of airway support interventions during the last hospitalization. The independent effects of various characteristics on the receipt of hospice care, CPR during the last hospitalization, and airway support interventions during the last hospitalization were evaluated using multivariate logistic regressions. Results: A total of 587,490 patients were included, of which 434,142 died of cancers and 153,348 died of noncancer diseases. There were significant trends of increase in receiving hospice care service and significant trends of decrease in receiving CPR or airway support interventions during the last hospitalization in both patients who died of cancers and those who died of noncancer diseases. Compared with patients who died of cancers, those who died of noncancer diseases were less likely to receive hospice care service (adjusted odds ratio [AOR]: 0.087; 95% confidence interval [CI]: 0.085-0.089) and had a higher risk of receiving CPR (AOR: 3.610; 95% CI: 3.521-3.704) or airway support interventions during the last hospitalization (AOR: 3.086; 95% CI: 3.021-3.165). Conclusions: Hospice care service should be promoted for all patients with end-stage diseases especially those with noncancer diseases.

18.
Artigo em Inglês | MEDLINE | ID: mdl-39002950

RESUMO

OBJECTIVES: To assess the outcomes of percutaneous nephrostomy in England for renal decompression, in the context of metastatic cancer. METHODS: Retrospective observational study of all patients undergoing nephrostomy with a diagnosis of metastatic cancer from 2010 to 2019 in England, identified and followed up within Hospital Episode Statistics.The primary outcome measure was mortality (14-day and 30-day postprocedure). Secondary outcomes included subsequent chemotherapy or surgery and direct complications of nephrostomy. RESULTS: 10 932 patients were identified: 58.0% were male, 51.0% were >70 years old and 57.7% had no relevant comorbidities (according to Charlson's criteria, other than cancer).1 in 15 patients died within 14 days of nephrostomy and 1 in 6 died within 30 days. Factors associated with higher 30-day mortality were the presence of comorbidities (Charlson score 1-4 (OR 1.27, 95% CI 1.08 to 1.50, p=0.003), score 5+ (OR 1.29, 95% CI 1.14 to 1.45), p<0.001)); inpatient nephrostomy (OR 3.76, 95% CI 2.75 to 5.14, p<0.001) and admitted under the care of specialities of internal medicine (OR 2.10, 95% CI 1.84 to 2.40, p<0.001), oncology (OR 1.80, 95% CI 1.51 to 2.15, p<0.001), gynaecology/gynaeoncology (OR 1.66, 95% CI 1.21 to 2.28, p=0.002) or general surgery (OR 1.62, 95% CI 1.32 to 1.98, p<0.001)), compared with urology.25.4% received subsequent chemotherapy. Receiving chemotherapy was associated with younger patients (eg, age 18-29 (OR 4.04, 95% CI 2.66 to 6.12, p<0.001) and age 30-39 (OR 3.07, 95% CI 2.37 to 3.97, p<0.001)) and under the care of oncology (OR 1.60, 95% CI 1.40 to 1.83, p<0.001) or gynaecology/gynaeoncology (OR 1.64, 95%CI 1.28 to 2.10, p<0.001) compared with urology.43.8% had subsequent abdominopelvic surgery. Not receiving surgery was associated with inpatient nephrostomy (OR 0.82, 95%CI 0.72 to 0.95,p=0.007): non-genitourinary cancers (eg, gynaecology/gynaeoncology cancer (OR 0.86, 95% CI 0.74 to 0.99, p=0.037)); and under the care of a non-surgical specialty (medicine (OR 0.69, 95% CI 0.63 to 0.77, p<0.001), oncology (OR 0.58, 95% CI 0.51 to 0.66, p<0.001)).24.5% of patients had at least one direct complication of nephrostomy: 12.5% required early exchange of nephrostomy, 8.1% had bleeding and 6.7% had pyelonephritis. CONCLUSIONS: The decision to undertake nephrostomy in patients with poor prognosis cancer is complex and should be undertaken in a multidisciplinary team setting. Complication rates are high and minimal survival benefit is derived in many patients, especially in the context of emergency inpatient care.

19.
Am J Hosp Palliat Care ; : 10499091241268304, 2024 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-39056381

RESUMO

INTRODUCTION: Advance medical directives (AMD) are statements made by individuals indicating the life-sustaining treatment that they would refuse in the future when they lost their mental capacity for medical decisions. While the proposal for the AMD legislation is ongoing locally in Hong Kong SAR, there are limited reviews on the clinical outcomes associated with it. OBJECTIVE: To provide a comprehensive review on clinical outcomes of signed AMD. METHODOLOGY: Retrospective, multi-center study, which includes AMD signed within five cluster hospitals. Records of signed AMD from 1st JAN 2020 to 31st DEC 2022 were retrieved from a central registry. Clinical information of each patient was obtained from the electronic patient record. RESULT: 456 patients with documented AMD were included in the study. 91.6% of AMD were signed by palliative care (PC) team. Majority (74.6%) of the patients were accompanied by family members or friends when AMD were signed. The concordance rate between the AMD and the medical care received was 89.5%. No patient revoked their AMD. Cancer and non-cancer patients showed similar rates of AMD concordance, frequency of Accident & Emergency Department (AED) visits or acute ward admissions, duration of hospital stays in the 30 days before death, and prevalence of receiving invasive or intensive treatments. CONCLUSION: Our study demonstrated that PC team currently plays a pivotal role in AMD completion, and AMD remains important in ensuring patients' care preferences are executed across different medical conditions. With the upcoming AMD legislation in Hong Kong SAR, adequate promotion and education should be launched.

20.
Am J Hosp Palliat Care ; : 10499091241268585, 2024 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-39069375

RESUMO

PURPOSE: To assess the End of life care (EOLC ) practices and the magnitude of futile care in a tertiary cancer center. To find out the barriers in provision of good EOLC in cancer patients. METHODS: An observational study was done on 129 patients. Patients were enrolled using the palliative prognostic index (PPI) in the end of life stages. Socio-demographic and clinical details were recorded. Detailed counselling done by the palliative physician or the oncologist was recorded. The barriers in provision of care were recorded. RESULTS: In this study initial experience of 129 patients were analyzed. PPI score was >6 (survival shorter than 3 weeks) in 85 (65.89%) ; 34 (26.36%) had PPI score between >4 to 6 (survival between 3 to 6 weeks); and 10 (7.75%) patients had PPI score less than equal to 4( survival more than 6 weeks).77 (59.69%) patients preferred home as their place for EOLC while 41(31.78%) preferred hospital, 7 (5.43%) preferred hospice while 4 (3.10%) opted ICU for their EOLC . The most common barrier associated was caregiver related in 34 case, followed by physician related in 14 cases and patients related in 3 cases, because of hope of being cured in hospital, social stigma, fear of worsening of symptoms at home, denial. CONCLUSION: EOLC is the least studied part of patient care with various barriers. With proper communication and a good palliative care support, futile treatment can be avoided. With healthy communication we can empower family members and patients for a good EOLC.

SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA