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1.
Age Ageing ; 53(10)2024 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-39366678

RESUMO

BACKGROUND: End-of-life periods are often characterised by suboptimal healthcare use (HCU) patterns in persons aged 65 years and older, with negative effects on health and quality of life. Understanding care trajectories (CTs) and transitions in this period can highlight potential areas of improvement, a subject yet only little studied. OBJECTIVE: To propose a typology of CTs, including care transitions, for older individuals in the 2 years preceding death. DESIGN: Retrospective cohort study. METHODS: We used multidimensional state sequence analysis and data from the Care Trajectories-Enriched Data (TorSaDE) cohort, a linkage between a Canadian health survey and Quebec health administrative data. RESULTS: In total, 2080 decedents were categorised into five CT groups. Group 1 demonstrated low HCU until the last few months, whilst group 2 showed low HCU over the first year, followed by a steady increase. A gradual increase over the 2 years was observed for groups 3 and 4, though more pronounced towards the end for group 3. A persistent high HCU was observed for group 5. Groups 2 and 4 had higher proportions of cancer diagnoses and palliative care, as opposed to comorbidities and dementia for groups 3 and 5. Overall, 68.4% of individuals died in a hospital, whilst 27% received palliative care there. Care transitions increased rapidly towards the end, most notably in the last 2 weeks. CONCLUSION: This study provides an understanding of the variability of CTs in the last two years of life, including place of death, a critical step towards quality improvement.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Assistência Terminal/estatística & dados numéricos , Masculino , Idoso , Feminino , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Cuidados Paliativos/estatística & dados numéricos , Quebeque/epidemiologia , Fatores de Tempo , Fatores Etários , Qualidade de Vida , Mortalidade Hospitalar
2.
Artigo em Inglês | MEDLINE | ID: mdl-39368049

RESUMO

Especially older adults are increasingly stimulated to think about, talk about and record their preferences with regard to future (health)care decisions, preferably in a pro-active manner. In this paper, I analyse these anticipatory choice processes. My goal is twofold: Firstly, to provide a deeper understanding of what it actually means to decide in advance about end-of-life treatments or options. Secondly, to make a theoretical contribution to bioethics and ACP-theories by rethinking the concept of end-of-life choices from a phenomenological viewpoint. To achieve this, I start by presenting a case narrative that elucidates how these anticipatory choices are lived. Secondly, I map out a theoretical framework about choice based on the phenomenology of the will of Paul Ricoeur. Finally, guided by this Ricoeurian framework, I investigate the potential meaning of choice in the context of contemporary advance care planning trajectories. The analysis demonstrates that choice and agency always imply notions of passivity and uncontrollability. It also indicates the significant value of hesitation and ambivalence. Moreover, it highlights the importance of the notion of co-responsibility in the context of anticipated end-of-life choices, and the relevant distinction between a (willed) choice and a wish. To improve care and support regarding end-of-life trajectories and to promote meaningful conversations, it is imperative to integrate these underrated elements more substantially in our theories, language and practical approaches. I conclude by suggesting that, in order to do justice to the real-life complexities, we might even need to revise the notion of advance 'directives'.

3.
JMIR Res Protoc ; 13: e56353, 2024 Oct 08.
Artigo em Inglês | MEDLINE | ID: mdl-39378420

RESUMO

BACKGROUND: Artificial intelligence (AI) has become a pivotal element in health care, leading to significant advancements across various medical domains, including palliative care and hospice services. These services focus on improving the quality of life for patients with life-limiting illnesses, and AI's ability to process complex datasets can enhance decision-making and personalize care in these sensitive settings. However, incorporating AI into palliative and hospice care requires careful examination to ensure it reflects the multifaceted nature of these settings. OBJECTIVE: This scoping review aims to systematically map the landscape of AI in palliative care and hospice settings, focusing on the data diversity and model robustness. The goal is to understand AI's role, its clinical integration, and the transparency of its development, ultimately providing a foundation for developing AI applications that adhere to established ethical guidelines and principles. METHODS: Our scoping review involves six stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting with stakeholders. Searches were conducted across databases including MEDLINE through PubMed, Embase.com, IEEE Xplore, ClinicalTrials.gov, and Web of Science Core Collection, covering studies from the inception of each database up to November 1, 2023. We used a comprehensive set of search terms to capture relevant studies, and non-English records were excluded if their abstracts were not in English. Data extraction will follow a systematic approach, and stakeholder consultations will refine the findings. RESULTS: The electronic database searches conducted in November 2023 resulted in 4614 studies. After removing duplicates, 330 studies were selected for full-text review to determine their eligibility based on predefined criteria. The extracted data will be organized into a table to aid in crafting a narrative summary. The review is expected to be completed by May 2025. CONCLUSIONS: This scoping review will advance the understanding of AI in palliative care and hospice, focusing on data diversity and model robustness. It will identify gaps and guide future research, contributing to the development of ethically responsible and effective AI applications in these settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56353.


Assuntos
Inteligência Artificial , Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Cuidados Paliativos/métodos , Humanos , Cuidados Paliativos na Terminalidade da Vida/métodos
4.
Health Policy ; 150: 105174, 2024 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-39378716

RESUMO

BACKGROUND: Voluntary stopping of eating and drinking (VSED) is a way to end one's life prematurely. We synthesized the empirical data on VSED. METHODS: In this systematic mixed-methods review, we searched MEDLINE, CINAHL, PsycINFO, Google Scholar, and BELIT for English and German articles published between January 1, 2013 and November 12, 2021. We included quantitative and qualitative research examining the experiences, attitudes, and knowledge of people confronted with VSED. We inductively analyzed the data after quantitative data transformation. We assessed quality and confidence using the Mixed-Methods Appraisal Tool and GRADE-CERQual approach, respectively. This study was registered in PROSPERO (CRD42022283743). FINDINGS: We identified 22 eligible articles, comprising 16 studies. The participants were healthcare professionals and relatives, but not individuals undertaking VSED. We present here our findings on the challenges of accompanying VSED, positive experiences with VSED, and the identified needs. Support during VSED is needed at multiple levels (medical care, family relief, course planning), and the willingness to accompany VSED is very high among healthcare professionals. However, there are several problems, the most obvious being the lack of knowledge and expertise regarding VSED, placing a great burden on families and professionals. The confidence in the review findings ranged from moderate to low. INTERPRETATION: Evidence-based guidance, in-depth knowledge, and training of healthcare professionals can greatly reduce the burden and fear among individuals accompanying VSED.

5.
BMC Med Ethics ; 25(1): 110, 2024 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-39385217

RESUMO

BACKGROUND: The development of controlled donation after circulatory death (cDCD) is both important and challenging. The tension between end-of-life care and organ donation raises significant ethical issues for healthcare professionals in the intensive care unit (ICU). The aim of this prospective, multicenter, observational study is to better understand ICU physicians' and nurses' experiences with cDCD. METHODS: In 32 ICUs in France, ICU physicians and nurses were invited to complete a questionnaire after the death of end-of-life ICU patients identified as potential cDCD donors who had either experienced the withdrawal of life-sustaining therapies alone or with planned organ donation (OD(-) and OD( +) groups). The primary objective was to assess their anxiety (State Anxiety Inventory STAI Y-A) following the death of a potential cDCD donor. Secondary objectives were to explore potential tensions experienced between end-of-life care and organ donation. RESULTS: Two hundred six ICU healthcare professionals (79 physicians and 127 nurses) were included in the course of 79 potential cDCD donor situations. STAI Y-A did not differ between the OD(-) and OD( +) groups for either physicians or nurses (STAI Y-A were 34 (27-38) in OD(-) vs. 32 (27-40) in OD( +), p = 0.911, for physicians and 32 (25-37) in OD(-) vs. 39 (26-37) in OD( +), p = 0.875, for nurses). The possibility of organ donation was a factor influencing the WLST decision for nurses only, and a factor influencing the WLST implementation for both nurses and physicians. cDCD experience is perceived positively by ICU healthcare professionals overall. CONCLUSIONS: cDCD does not increase anxiety in ICU healthcare professionals compared to other situations of WLST. WLST and cDCD procedures could further be improved by supporting professionals in making their intentions clear between end-of-life support and the success of organ donation, and when needed, by enhancing communication between ICU physician and nurses. TRIAL REGISTRATION: This research was registered in ClinicalTrials.gov (Identifier: NCT05041023, September 10, 2021).


Assuntos
Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva , Assistência Terminal , Obtenção de Tecidos e Órgãos , Humanos , Obtenção de Tecidos e Órgãos/ética , Assistência Terminal/ética , Masculino , Feminino , Estudos Prospectivos , França , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários , Morte , Ansiedade , Médicos/psicologia , Doadores de Tecidos , Pessoal de Saúde/psicologia , Enfermeiras e Enfermeiros/psicologia , Suspensão de Tratamento/ética
6.
BMC Palliat Care ; 23(1): 241, 2024 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-39390487

RESUMO

BACKGROUND: At present, there are no specific guidelines for the treatment of diabetes in palliative care in Norway. The aim of this study was therefore to explore healthcare professionals' experiences of providing palliative care to individuals with diabetes in specialist as well as primary care settings. METHODS: We interviewed 12 healthcare professionals from two palliative care units in specialist healthcare, one hospice unit in a nursing home, and one dietary care unit providing counselling in the municipality in the eastern part of Norway. Thematic analysis was used to analyze the data. RESULTS: Our analysis generated three main themes: 1) "Quality of life is the main focus", which showed that the healthcare professionals' main focus was on comforting patients through engagement and communication; 2) "An individualized approach", emphasizing that the treatment was tailored to the unique circumstances of each individual and considered factors such as life expectancy, difficult blood glucose control, and multidisciplinary collaboration, and 3) "Diabetes in the background", which highlighted that they had a modest focus on diabetes. Diabetes was seen as another aspect of health that they had to be aware of, but their limited knowledge of diabetes guidelines, technical tools, and treatment choices underscored that attentiveness to the diabetes treatment was not prominent. CONCLUSION: The findings show that a lack of guidelines allowed for diverse approaches to the treatment of patients with diabetes in palliative care. Attentiveness to diabetes was based on the individual healthcare professionals' experience and expertise, professional views, and the circumstances of each individual.


Assuntos
Diabetes Mellitus , Pessoal de Saúde , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Masculino , Noruega , Feminino , Diabetes Mellitus/terapia , Diabetes Mellitus/psicologia , Pessoal de Saúde/psicologia , Pessoa de Meia-Idade , Adulto , Qualidade de Vida/psicologia , Atitude do Pessoal de Saúde , Entrevistas como Assunto/métodos
7.
Palliat Support Care ; : 1-14, 2024 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-39390769

RESUMO

OBJECTIVES: Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death. METHODS: A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013-December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults. RESULTS: This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence. SIGNIFICANCE OF RESULTS: The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

8.
Res Health Serv Reg ; 3(1): 15, 2024 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-39379785

RESUMO

Providing timely and satisficing End-of-Life care (EOLC) is a priority for healthcare systems since aging population and chronic diseases are boosting the global demand for care at end-of-life (EOL). In OECD countries the access to EOLC is insufficient. In Italy, the average rate of cancer patients assisted by the palliative care (PC) network at EOL was 28% in 2021, with high variability in the country. Among the Italian regions offering the best coverages, Tuscany has a rate of about 40%, but intraregional variation is marked as well. The study aims to explore the delivery of EOLC to adult cancer patients in public facilities in the Tuscany region through survey data collection among professionals. Two online surveys were delivered to Directors of community-based PC Functional-Units (FUs) and Directors of hospital-based medical-oncology units. All FU Directors responded to the survey (n = 14), and a response rate of 96% was achieved from hospital-unit Directors (n = 27). The results highlight the availability of numerous dedicated services, but reveal heterogeneity among and within organisations, including variations in the professionals involved, pathways, and tools adopted. Care continuity is supported by institutionalized collaboration between hospital and community settings, but hindered by fragmented care processes and heterogeneous transition pathways. Late referral to PC is perceived as a major constraint to EOLC. Developing structured pathways for patient transition to end-stage PC is crucial, and practices/processes should be uniformly implemented to ensure equity. Multi-professional care should be facilitated through tailored supporting tools. Both hospital-unit and FU Directors suggest developing shared pathways between organisations/professionals (82% and 80% respectively) and digital information sharing (61% and 80% respectively). Hospital and community-based professionals have similar perceptions about the concerns and challenges to EOLC provision in the region, but community-based professionals are more sensitive to the importance of improving communication on PC to the public and early discussing EOLC with caregivers. This finding suggests the need of enhancing hospital personnel's awareness about these issues. Professional training and the capacity to assess patients' needs and preferences should be improved. The identified needs can inform future research and interventions to improve the quality and outcomes of EOLC for cancer patients.

9.
Health Expect ; 27(5): e70041, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39373127

RESUMO

AIM: To implement shared decision-making (SDM) through a patient decision aid (PtDA) for the initiation of palliative care (PC) in end-of-life (EOL) cancer patients. METHODOLOGY: A comprehensive Scoping Review was conducted on SDM in PubMed, CINAHL and PsycInfo. An evidence-based implementation of PtDAs was created using the Joanna Briggs Institute framework, which followed rigorous pillars: (1) context, (2) facilitation and (3) evaluation. RESULTS: Fifteen studies were identified and categorised into (1) Implementation characteristics and (2) Strategies for implementing SDM in terminally ill cancer patients. SDM should consider the decision-making location, optimal timing, participants and decision type. Strategies include professional training, PtDAs and implementation programmes. A PtDA implementation protocol in video format for deciding to initiate PC is proposed, following International Patient Decision Aid Standards (IPDAS) and Clinical Practice Guidelines (CPG). CONCLUSIONS: SDM implementation should be guided by evidence-based methodological models justifying and structuring its execution, especially in complex and interdisciplinary contexts. National or international frameworks facilitate the adoption of health innovations, such as PtDAs, benefiting patients and improving their usage. PRACTICE IMPLICATIONS: SDM is not just a concept but an important approach to the Care of cancer patients at EOL, enhancing patient satisfaction and improving care quality. The success and sustainability of SDM hinge on the fundamental aspects of staff training, interdisciplinary collaboration and ongoing evaluation. The lack of specific aid in Spanish underscores the immediate need for local development. Further research is needed in this area, as most reviewed studies did not measure SDM effectiveness in diverse hospital settings. PATIENT OR PUBLIC CONTRIBUTION: This proposal was developed based on the experience and input of the nursing staff from the healthcare service where it is intended to be implemented.


Assuntos
Tomada de Decisão Compartilhada , Cuidados Paliativos , Assistência Terminal , Humanos , Técnicas de Apoio para a Decisão , Neoplasias/terapia , Participação do Paciente/métodos
10.
Palliat Support Care ; : 1-11, 2024 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-39379285

RESUMO

OBJECTIVES: Promising studies show that psilocybin-assisted therapy relieves existential distress in patients with serious illnesses, a difficult condition to treat with current treatment options. There is growing interest in this therapy in palliative care. Canada recently amended its laws to allow physicians to request psilocybin for end-of-life distress. However, barriers to access remain. Since implementing psilocybin-assisted therapy within palliative care depends on the attitudes of healthcare providers willing to recommend it, they should be actively engaged in the broader discussion about this treatment option. We aimed (1) to identify issues and concerns regarding the acceptability of this therapy among palliative care professionals and to discuss ways of remedying them and (2) to identify factors that may facilitate access. METHODS: A qualitative study design and World Café methodology were adopted to collect data. The event was held on April 24, 2023, with 16 palliative care professionals. The data was analyzed following an inductive approach. RESULTS: Although participants were interested in psilocybin-assisted therapy, several concerns and needs were identified. Educational and certified training needs, medical legalization of psilocybin, more research, refinement of therapy protocols, reflections on the type of professionals dispensing the therapy, the treatment venue, and eligibility criteria for treatment were discussed. SIGNIFICANCE OF RESULTS: Palliative care professionals consider psilocybin-assisted therapy a treatment of interest, but it generates several concerns. According to our results, the acceptability of the therapy and the expansion of its access seem interrelated. The development of guidelines will be essential to encourage wider therapy deployment.

11.
Indian J Palliat Care ; 30(3): 268-274, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39371497

RESUMO

Objectives: Achieving a 'good death' is one of the important goals of palliative care. Providing goal-concordant care and an environment tailored to the patient's preferences can contribute to a 'good death'. However, the concordance rate between the preferred and actual places of death among advanced cancer patients in Japan is less explored. This study aimed to identify the concordance between patients' preferred and actual places of death and the associated factors among patients with advanced cancer in Japan. Materials and Methods: Patients with advanced cancer who underwent chemotherapy at Tohoku University Hospital between January 2015 and January 2016 were enrolled and followed up for 5 years. The enrolled patients were asked about their preference for their place of death. The response options were: "Own home," "General ward" and "Palliative care unit (PCU)." We compared the actual place of death with the patient's preference through a follow-up review of the medical records. Results: A total of 157 patients with advanced cancer were enrolled between January 2015 and January 2016. Of these patients, 22.9% (11/48) died at home according to their preference, 64.0% (16/25) in the general ward and 37.9% (11/29) in the PCU. Only thirty-seven (37.3%) patients died where they wanted, based on the comparison between patients' preferences and actual places of death. Conclusion: The concordance rate between the preferred and actual places of death is not high in Japan. Improving concordance between patients' preferences and actual places of death has the potential to improve end-of-life care.

12.
Pediatr Blood Cancer ; : e31354, 2024 Oct 04.
Artigo em Inglês | MEDLINE | ID: mdl-39367580

RESUMO

Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

13.
Pain Manag ; : 1-6, 2024 Oct 08.
Artigo em Inglês | MEDLINE | ID: mdl-39377447

RESUMO

Pain, a prevalent and debilitating symptom in cancer patients, significantly diminishes the quality of life for both individuals and their families. Addressing this critical issue, our study presents the case of a 15-year-old diagnosed with synchronous multifocal multicentric osteosarcoma. We utilized radiofrequency ablation of bilateral splanchnic nerves, a strategy of multimodal pain and palliative care. This approach not only proved to be safe and effective but also markedly improved the patient's quality of life. Our findings shine a light of hope, emphasizing the paramount importance of innovative pain management in pediatric oncology, especially in the final stages of life. This case report highlights the unwavering dedication to excellence in relieving suffering, offering hope for patients grappling with cancer.


Pain is a common and serious problem for cancer patients, osteosarcoma is a type of bone cancer that often affects children. making life hard for them and their families. We used a therapy called radiofrequency ablation on specific nerves to manage the pain. In the case of the patient's abdominal pain, this therapy was safe, worked well, and greatly improved the patient's quality of life. Our findings show the importance of new pain management methods in helping children with cancer, helping them reduce pain, using fewer strong pain medications and helping children in this case in the final stage of life.

14.
J Am Geriatr Soc ; 2024 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-39353852

RESUMO

BACKGROUND: National guidelines recognize lifetime trauma as relevant to clinical care for adults nearing the end of life. We determined the prevalence of early life and cumulative trauma among persons at the end of life by gender and birth cohort, and the association of lifetime trauma with end-of-life physical, mental, and social well-being. METHODS: We used nationally representative Health and Retirement Study data (2006-2020), including adults age > 50 who died while enrolled (N = 6495). Early life and cumulative traumatic events were measured using an 11-item traumatic events scale (cumulative trauma: 0-5+ events over the lifespan). We included six birth cohorts (born <1924; children of depression [1924-1930]; HRS cohort [1931-1941]; war babies [1942-1947]; early baby-boomers [1948-1953]; mid-baby boomers [1954-1959]). End-of-life outcomes included validated measures of physical (pain, fatigue, dyspnea), mental (depression, life satisfaction), and social (loneliness, social isolation) needs. We report the prevalence of lifetime trauma by gender and birth cohort and the adjusted probability of each end-of-life outcome by trauma using multivariable logistic regression. RESULTS: The mean age at death was 78 years (SD = 11.1) and 52% were female. Lifetime trauma was common (0 events: 19%; 1-2: 47%; 3-4: 25%; 5+: 9%), with variation in individual events (e.g., death of a child, weapons in combat) by gender and birth cohort. After adjustment, increasing cumulative trauma was significantly associated (p-value<0.001) with higher reports of end-of-life moderate-to-severe pain (0 events: 46%; 1-2 events: 50%; 3-4 events: 57%; 5+ events: 60%), fatigue (58%; 60%; 66%; 69%), dyspnea (46%; 51%; 56%; 58%), depression (24%; 33%; 37%; 40%), loneliness (12%; 17%; 19%; 22%), and lower life satisfaction (73%; 63%; 58%; 54%). CONCLUSION: Older adults in the last years of life report a high prevalence of lifetime traumatic events which are associated with worse end-of-life physical and psychosocial health. A trauma-informed approach to end-of-life care and management of physical and psychosocial needs may improve a patient's quality of life.

16.
Palliat Support Care ; : 1-4, 2024 Oct 03.
Artigo em Inglês | MEDLINE | ID: mdl-39360444

RESUMO

OBJECTIVES: Current recommendations do not separate adult and pediatric palliative care (PC) in terms of the personnel needed, or the distribution of care between community and hospital-based services. We evaluated the differences in the utilization of pediatric and adult hospital PC services for non-oncological patients. METHODS: Retrospective study. Parameters included demographics, underlying diagnoses, number of consultations per patient, duration of PC involvement, and follow-up. All non-oncology patients seen by the adult or pediatric PC teams between June 2021 and July 2023 at a single tertiary hospital. RESULTS: A total of 445 adults and 48 children were seen by the adult and pediatric palliative teams, respectively. Adults were primarily seen in the terminal stages of common chronic diseases, with a high mortality rate. Children were mainly seen at a very young age with rare and complicated diseases. Children needed longer duration of follow-up (114 vs. 5 days, p < 0.001), more consultations (8.5 vs. 4, p < 0.001), and died less while hospitalized (25% of patients vs. 61.6%, p < 0.001). SIGNIFICANCE OF RESULTS: Adult patients had relatively common diseases, seen and treated often by primary care practitioners, whereas children had rare life-limiting diseases, which primary care pediatricians may have limited experience with, and which require involvement of multiple specialized hospital-based services. Future healthcare PC planning should consider these factors in planning the primary setting for PC teams, specifically more training of adult general practitioners in PC skills, and earlier referral of pediatric patients to hospital-based PC.

17.
Palliat Support Care ; : 1-9, 2024 Oct 03.
Artigo em Inglês | MEDLINE | ID: mdl-39360707

RESUMO

OBJECTIVES: This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). METHODS: The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review. RESULTS: Our results are organized into the following 4 sections - how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL. SIGNIFICANCE OF RESULTS: Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.

18.
Intensive Care Med ; 2024 Oct 03.
Artigo em Inglês | MEDLINE | ID: mdl-39361081

RESUMO

The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research.

20.
Gerontologist ; 64(11)2024 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-39392304

RESUMO

BACKGROUND AND OBJECTIVES: Home health care supports patient goals for aging in place. Our objective was to determine if home health care use in the last 3 years of life reduces the risk of inpatient death without hospice. RESEARCH DESIGN AND METHODS: We analyzed the characteristics of 2,065,300 Medicare beneficiaries who died in 2019 and conducted multinomial logistic regression analyses to evaluate the association between the use and timing of home health care, dementia diagnosis, and place of death. RESULTS: Receiving any home health care in the last 3 years of life was associated with a lower probability of inpatient death without hospice (Pr 23.3% vs 31.5%, p < .001), and this effect was stronger when home health care began prior to versus during the last year of life (Pr 22.5% vs 24.3%, p < .001). Among all decedents, the probability of death at home with hospice compared to inpatient death with hospice was greater when any home health care was used (Pr 46.0% vs 36.5%, p < .001), and this association was strongest among beneficiaries with dementia who started home health care at least 1 year prior to death (Pr 55.6%, p < .001). DISCUSSION AND IMPLICATIONS: Use of home health care during the last 3 years of life was associated with reduced rates of inpatient death without hospice, and increased rates of home death with hospice. Increasing affordable access to home health care can positively affect end-of-life care outcomes for older Americans and their family caregivers, especially those with dementia.


Assuntos
Demência , Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Medicare , Humanos , Estados Unidos/epidemiologia , Serviços de Assistência Domiciliar/estatística & dados numéricos , Masculino , Feminino , Demência/mortalidade , Idoso , Idoso de 80 Anos ou mais , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Assistência Terminal , Morte
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