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1.
Artigo em Inglês | MEDLINE | ID: mdl-39019351

RESUMO

CONTEXT: Clear, accessible, and thorough documentation of serious illness conversations helps ensure that critical information patients share with clinicians is reflected in their future care. OBJECTIVES: We sought to characterize and compare serious illness conversations recorded two different ways in the electronic health record to better understand patterns of serious illness conversation documentation. METHODS: We performed content analysis of serious illness conversations documented in the electronic health record, whether documented via structured tab or free-text clinical notes, for patients (n=150) with advanced cancer who started a treatment associated with a poor prognosis between October 2020 and June 2022. A multidisciplinary team iteratively developed a codebook to classify serious illness conversation content (e.g., goals/hopes) on a preliminary sample (n=30), and two researchers performed mixed deductive-inductive coding on the remaining data (n=120). We reviewed documentation from 34 patients with serious illness conversations documentation in the structured tab only, 43 with documentation in only free-text clinical notes, and 44 with documentation of both types. We then compared content between documentation types. RESULTS: Information documented more frequently in structured tabs included fears/worries and illness understanding; clinical notes more often included treatment preferences, deliberations surrounding advance directives, function, and trade-offs. Qualitative insights highlight a range of length and detail across documentation types, and suggest notable authorship by palliative and social work clinicians. CONCLUSION: How serious illness conversations are documented in the electronic health record may impact the content captured. Future quality improvement efforts should seek to consolidate documentation sources to improve care and information retention.

2.
Age Ageing ; 53(7)2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-39023235

RESUMO

BACKGROUND: Advance care planning (ACP) aims to ensure that people with chronic or advanced disease receive medical care that is consistent with their values and preferences. However, professionals may find it challenging to engage these patients in conversations about the end of life. We sought to develop a pictorial tool to facilitate communication around ACP. METHODS: This was a three-phase study. In phase 1, we used the nominal group and Delphi techniques to achieve expert consensus regarding the conceptual content of the tool. In phase 2, a professional cartoonist was commissioned to create a series of cartoons representing each of the content areas resulting from the Delphi process. The pictorial tool was then administered (phase 3) with a sample of individuals with advanced/chronic disease to explore whether the cartoons were easy to understand and conveyed the intended message. RESULTS: Following a three-round Delphi process, consensus was reached regarding a set of 12 key content areas that should be considered in the context of an ACP interview. The cartoons created to represent each of the 12 areas were then reviewed and ordered so as to reflect the typical stages of an end-of-life care interview. After administering the pictorial tool with 24 frail older adults with advanced/chronic disease, changes were made to 9 of the 12 cartoons. CONCLUSIONS: The new pictorial tool comprises a set of 12 cartoons that can guide professionals as they seek to engage frail older adults with advanced/chronic disease in conversations about the end of life and ACP.


Assuntos
Planejamento Antecipado de Cuidados , Comunicação , Técnica Delphi , Humanos , Feminino , Idoso , Masculino , Idoso de 80 Anos ou mais , Consenso , Assistência Terminal/métodos , Doença Crônica/terapia , Idoso Fragilizado , Desenhos Animados como Assunto
3.
BMC Palliat Care ; 23(1): 176, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39026241

RESUMO

BACKGROUND: Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes. METHODS: Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. RESULTS: Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis. DISCUSSION: African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making. CONCLUSIONS: Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.


Assuntos
Atitude Frente a Morte , Cultura , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atitude Frente a Morte/etnologia , População Negra/psicologia , População Negra/etnologia , Família/psicologia , Família/etnologia , Grupos Focais/métodos , Teoria Fundamentada , Pesquisa Qualitativa , Assistência Terminal/psicologia , População do Caribe/psicologia
4.
BMC Med Ethics ; 25(1): 80, 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39039465

RESUMO

BACKGROUND: Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their 'presumed will'. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals' autonomy by ensuring that proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders' views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK. METHODS: We conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically. RESULTS: Participants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: (1) Planting a seed - creating opportunities to initiate/engage with ARP; (2) A missing part of the puzzle - how preferences expressed through ARP could help inform decisions; (3) Finding the sweet spot - optimising the timing of ARP; (4) More than a piece of paper - finding the best mode for recording preferences; (5) Keeping the door open to future opportunities - minimising the risk of unintended consequences; and (6) Navigating with a compass - principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities. CONCLUSIONS: This study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility.


Assuntos
Tomada de Decisões , Estudos de Viabilidade , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Reino Unido , Pessoa de Meia-Idade , Adulto , Participação dos Interessados , Planejamento Antecipado de Cuidados , Consentimento Livre e Esclarecido/ética , Idoso
5.
Asia Pac J Oncol Nurs ; 11(6): 100495, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38975609

RESUMO

Chimeric antigen receptor T cell (CAR-T) therapy is an immunotherapy that involves genetically modifying the patient's own T cells to express a chimeric antigen receptor, enabling them to recognize and destroy cancer cells. This treatment has revolutionized the prognosis and management of hematological malignancies, leading to a significant increase in long-term survivors. However, there is limited evidence regarding late sequelae and post-treatment care due to the recent emergence of this therapy. The rapid advancement of CAR-T therapies has created opportunities for advanced practice nurses to play a crucial role in coordinating care, providing education, and ensuring the ongoing well-being of survivors. This article provides an overview of the physical, psychosocial, and financial challenges faced by long-term survivors of CAR-T therapy and proposes a comprehensive nursing care plan to address these issues.

6.
Plant J ; 2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38976238

RESUMO

Plants produce a staggering array of chemicals that are the basis for organismal function and important human nutrients and medicines. However, it is poorly defined how these compounds evolved and are distributed across the plant kingdom, hindering a systematic view and understanding of plant chemical diversity. Recent advances in plant genome/transcriptome sequencing have provided a well-defined molecular phylogeny of plants, on which the presence of diverse natural products can be mapped to systematically determine their phylogenetic distribution. Here, we built a proof-of-concept workflow where previously reported diverse tyrosine-derived plant natural products were mapped onto the plant tree of life. Plant chemical-species associations were mined from literature, filtered, evaluated through manual inspection of over 2500 scientific articles, and mapped onto the plant phylogeny. The resulting "phylochemical" map confirmed several highly lineage-specific compound class distributions, such as betalain pigments and Amaryllidaceae alkaloids. The map also highlighted several lineages enriched in dopamine-derived compounds, including the orders Caryophyllales, Liliales, and Fabales. Additionally, the application of large language models, using our manually curated data as a ground truth set, showed that post-mining processing can largely be automated with a low false-positive rate, critical for generating a reliable phylochemical map. Although a high false-negative rate remains a challenge, our study demonstrates that combining text mining with language model-based processing can generate broader phylochemical maps, which will serve as a valuable community resource to uncover key evolutionary events that underlie plant chemical diversity and enable system-level views of nature's millions of years of chemical experimentation.

7.
BMC Palliat Care ; 23(1): 167, 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38982407

RESUMO

CONTEXT: Advance Care Planning (ACP), as a process for expressing and recording patients' preferences about end-of-life care, has received increasing attention in recent years. However, implementing ACP has been challenging in Iran. OBJECTIVES: To assess the readiness for advance care planning and related factors in the general population of Iran. METHODS: This cross-sectional study was conducted on the general population of Iran in 2022. The data was collected using demographic information questionnaire and The RACP Scale. The purpose and methodology of the research was explained to all participants, and upon their agreement an informed consent was obtained. Participants were invited to fill out the questionnaires wherever is more convenient for them, either alone or if needed, with the help of the researcher to protect their privacy. Chi-square, fisher exact test and multiple logistic Regression model were used to assess the effective factors on the RACP. The data were analyzed by SPSS software version 26. RESULTS: A total of 641 people with an average age of 36.85 ± 12.05 years participated in this study. Of those, 377 (58.8%) had high RACP. The logistics model showed an association between the chance of readiness for receiving ACP with participants' education level, such that the chance of readiness in those with Master's or Ph.D. degrees was three times higher than those with a diploma (p = 0.00, OR:3.178(1.672, 6.043)). However, the chances of readiness in those with bachelor's degrees was not significantly different from those with a diploma (p = 0.936, OR: 0.984 (0.654, 1.479)). Moreover, the chance of readiness was 1.5 higher in participants over 40 years of age compared with participants under the age of 40 (P = 0.01, OR: 1.571(1.10, 2.23)). CONCLUSION: According to the findings of this study, it can be concluded that there is a relatively RACP among people in Iranian society. The readiness of individuals for ACP increases by their age and education level. Therefore, by holding appropriate training intervention, we can increase the readiness of the public for ACP to improve their end-of-life outcome.


Assuntos
Planejamento Antecipado de Cuidados , Humanos , Estudos Transversais , Irã (Geográfico) , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Planejamento Antecipado de Cuidados/normas , Planejamento Antecipado de Cuidados/tendências , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários , Idoso , Modelos Logísticos
8.
BMC Prim Care ; 25(1): 247, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38971761

RESUMO

BACKGROUND: General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results. METHODS: We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions. RESULTS: Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future. CONCLUSIONS: Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice. TRIAL REGISTRATION: ISRCTN12995230; prospectively registered on 19/06/2020.


Assuntos
Planejamento Antecipado de Cuidados , Medicina Geral , Humanos , Bélgica , Masculino , Feminino , Pessoa de Meia-Idade , Medicina Geral/organização & administração , Idoso , Inquéritos e Questionários , Clínicos Gerais , Adulto , Grupos Focais
9.
Yale J Biol Med ; 97(2): 115-124, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38947103

RESUMO

This study examined the impact of advance care planning (ACP) on the quality of life for patients with chronic kidney disease (CKD) at Komfo Anokye Teaching Hospital in Ghana. It specifically investigated patients' perspectives on their readiness for ACP. Utilizing a qualitative descriptive design, one-on-one interviews were conducted with CKD patients at the renal clinic, employing a semi-structured interview guide for thematic analysis of audio data. The findings revealed a gap in understanding among CKD patients, with participants acknowledging their vulnerability to renal failure, often linked to a medical history of diabetes and hypertension. Despite recognizing potential outcomes such as dialysis dependency or death, some patients retained hope for a cure, relying on faith. The initial kidney failure diagnosis induced shock and distress, leading many patients to prefer the comfort and familiarity of home-based care, including dialysis. Meanwhile, a minority favored hospital care to protect their children from psychological trauma. Most patients deemed legal preparations unnecessary, citing limited assets or a lack of concern for posthumous estate execution. These insights emphasize the necessity for targeted education and support in ACP to enhance patient outcomes in chronic kidney disease care and end-of-life planning.


Assuntos
Planejamento Antecipado de Cuidados , Hospitais de Ensino , Insuficiência Renal Crônica , Humanos , Gana , Masculino , Feminino , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/psicologia , Pessoa de Meia-Idade , Adulto , Idoso , Qualidade de Vida
11.
Anesthesiol Clin ; 42(3): 393-406, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39054015

RESUMO

Like most complex aspects of procedural care, sound perioperative management of limits to life-sustaining medical therapy requires a multidisciplinary team-based approach bolstered by appropriate care management strategies. This article discusses the implications of care for the patient for whom limitations of life-sustaining care are in place and the roles and responsibilities of each provider in supporting quality procedural care compatible with patients' right to self-determination. The authors focus on the roles of the surgeon, preoperative clinic provider, anesthesiologist, and postoperative care consultants and discuss how the health care system and care pathways can support and improve adherence to best practices.


Assuntos
Assistência Perioperatória , Humanos , Assistência Perioperatória/métodos , Diretivas Antecipadas , Cuidados para Prolongar a Vida/métodos
12.
Anesthesiol Clin ; 42(3): 377-392, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39054014

RESUMO

Preoperative review of existing advance directives and a discussion of patient goals should be routinely done to address any potential limitations on resuscitative therapies during perioperative care. Both surgeons and anesthesiologists should be collaboratively involved in these discussions, and all perioperative physicians should receive training in shared decision making and goals of care discussions. These discussions should center around patient preferences for limitations on life-sustaining medical therapy, which should be accurately documented and adhered to during the perioperative period. Patients should be informed that limitations of life-sustaining medical therapy may increase their risk of postoperative mortality.


Assuntos
Diretivas Antecipadas , Anestesia , Testamentos Quanto à Vida , Humanos , Anestesia/métodos , Anestesiologia , Assistência Perioperatória/métodos
13.
Am J Hosp Palliat Care ; : 10499091241266991, 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39041816

RESUMO

CONTEXT: Compared to patients with solid malignancies, less is known about the role of palliative care in patients with hematologic malignancies, leading to underutilization of palliative care. OBJECTIVES: Evaluate the timing and impact of palliative care referrals on end-of-life outcomes over a 5-year period with intent to improve the utilization of palliative care in patients with advanced hematologic malignancies. METHODS: A retrospective cohort of patients from an urban, NCI-designated comprehensive cancer center, aged 18 years and older with a diagnosis of an advanced hematologic malignancy were separated into groups of early, late, very late, or no specialty palliative care. Logistic regression models were constructed to examine variables associated with timing of palliative care referral. Groups were compared using the Kruskal Wallis test and Dunn's test with a Bonferroni correction method. RESULTS: 222 patients with advanced hematologic malignancies who died between July 1, 20218 and June 30, 2023 were included. 50 (23%), 41 (18%), and 51 (23%) patients received an early, late, and very late palliative care referral, respectively and 80 (36%) patients did not receive a palliative care referral. There was a significantly high completion of ACP documentation among the palliative care cohorts. There was no significant difference among all cohorts in end-of-life outcomes in the last 14 or 30 days of life. CONCLUSION: ACP documentation improved with palliative care, however, end-of-life outcomes did not. These results are likely due to the majority of late, inpatient palliative care referrals. Future studies with targeted interventions are needed to improve these outcomes.

14.
Artigo em Inglês | MEDLINE | ID: mdl-39032676

RESUMO

CONTEXT: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. OBJECTIVE: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. METHODS: We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018-2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. RESULTS: We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (p<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI 0.25-0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI 1.21-3.46) and less likely full code orders (OR 0.24, 95% CI 0.1-0.63). CONCLUSION: Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multi-center studies are needed to characterize more widespread experiences.

15.
Artigo em Inglês | MEDLINE | ID: mdl-39032784

RESUMO

Case report is a narrative description of the problem of one or several patients. The CARE checklist (CAse REport) is the consensus document for reporting clinical case reports and through adaptations to the different CARE disciplines is used to define standards for authors in scientific journals; however, the specificity of the nursing process makes it difficult to adjust nursing case reports to CARE. The aim was to analyze the publications of clinical cases with a nursing perspective in scientific journals, as well as the quality standards and evaluation systems used. Few journals reviewed agreed to publish nursing case reports or stated standards for authors to adjust to CARE. Preliminary results indicated average or poor adherence to CARE, with the most reported elements being: Keywords, patient information and introduction. Adherence was lower for the elements: Timeline, therapeutic intervention, follow-up and outcomes, and patient perspective. The characteristics of the nursing process implies a low adherence to CARE, so it is necessary to unify criteria to guide researchers, authors, reviewers and editors of scientific journals, as well as to improve the rigor and quality of the reports. Currently, there are no specific guidelines for reporting clinical case reports with a nursing perspective available. These normative gaps could be solved by developing a CARE extension adapted to the methodological characteristics of the nursing process.

16.
Geriatr Gerontol Int ; 2024 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-39037080

RESUMO

AIM: This study aimed to assess the impact of a physician-led intervention on advance care planning (ACP) introduction among older outpatients using a model discussion video. METHODS: This prospective interventional study included Japanese general practice outpatients aged ≥65 years. All participants received an ACP leaflet. Co-researchers were trained using a model discussion video based on the "Serious Illness Conversation Guide," and provided ACP introduction explanations to the intervention group to ensure intervention content consistency. The control group received the ACP leaflet only, with no standardized explanations. The primary outcome was ACP discussion occurrence. Secondary outcomes included ACP engagement (assessed through the 4-item ACP Engagement Survey), engagement score for advance directives acquisition and score for surrogate decision-maker identification, and anxiety incidence (assessed through Generalized Anxiety Disorder-7). RESULTS: This study included 48 participants: 25 (52.1%) in the intervention group and 23 (47.9%) in the control group. Regarding primary outcome, the intervention group had significantly more ACP discussions compared with the control group (92.0% vs 26.1%, adjusted odds ratio 50.2, P = 0.0012). Regarding secondary outcomes, the intervention group showed greater readiness (mean scores for the 4-item Engagement Survey [P = 0.0001], engagement score for advance directives acquisition [P = 0.01] and score for surrogate decision-maker determination [P = 0.03]) than the control group, without increasing anxiety. CONCLUSIONS: This physician-led ACP introduction for older patients in a Japanese general practice setting enhanced ACP readiness and stimulated discussions, without increasing anxiety. The model discussion video for ACP introduction might effectively train physicians in general practice settings. Geriatr Gerontol Int 2024; ••: ••-••.

17.
Palliat Care Soc Pract ; 18: 26323524241263108, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39045292

RESUMO

Advance care planning (ACP) supports individuals in aligning their medical care with personal values and preferences in the face of serious illness. The variety of ACP tools available reflects diverse strategies intended to facilitate these critical conversations, yet evaluations of their effectiveness often show mixed results. Following the Arskey and O'Malley framework, this scoping review aims to synthesize the range of ACP tools targeted at patients and families, highlighting their characteristics and delivery methods to better understand their impact and development over time. Studies included focused on patient-facing ACP tools across all settings and mediums. Exclusions were applied to studies solely targeting healthcare providers or those only aiming at completion of advance directives without broader ACP discussions. Searches were conducted across PubMed, Embase, CINAHL, The Cochrane Library, and Web of Science. Data were extracted using a predesigned spreadsheet, capturing study population, setting, intervention modality, and intervention theme. Tools were categorized by delivery method and further analyzed through a year-wise distribution to track trends and developments. We identified 99 unique patient-facing tools, with those focusing on counseling (31) and video technologies (21) being the most prevalent while others incorporated online platforms, print materials, games, or some combination of different delivery methods. Over half the tools were designed for specific patient groups, especially for various diseases and racial or ethnic communities. Recent years showed a surge in tool variety and innovation, including integrated patient portals and psychological techniques. The review demonstrates a broad array of innovative ACP tools that facilitate personalized and effective ACP. Our findings contribute to an enhanced understanding of their utilization and potential impacts, offering valuable insights for future tool development and policy making in ACP.


Scanning the landscape of tools to assist patients with advance care planning This review investigates the variety of tools, programs, and interventions designed to help patients plan their healthcare in advance, a process known as advance care planning (ACP). ACP is crucial because it ensures individuals receive medical care aligned with their wishes, especially during serious illness or near the end of life. Our study gathered information from various sources, focusing on tools aimed directly at patients and their families. We found 99 unique tools that assist in ACP, including individual counseling sessions, video-based tools, and digital platforms. Some tools are designed specifically for certain patient groups, such as those with particular diseases or belonging to diverse racial and ethnic communities. Our review highlights the recent surge in the variety and innovation of these tools, such as integrated patient portals and methods incorporating psychological techniques, suggesting a growing effort to make ACP more accessible and tailored to individual needs. However, despite this variety, more research is needed to understand how these tools impact healthcare outcomes and how they can be effectively implemented in different care settings. Our findings aim to guide future development of ACP tools, improve their integration into healthcare practices, and ensure they meet the diverse needs of patients and families.

18.
Palliat Care Soc Pract ; 18: 26323524241263109, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39045294

RESUMO

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings. Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options. Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning. Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care. Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health. Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

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.
Front Med (Lausanne) ; 11: 1396858, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38962739

RESUMO

Introduction: A considerable percentage of daily emergency calls are for nursing home residents. With the ageing of the overall European population, an increase in emergency calls and interventions in nursing homes (NH) is to be expected. A proportion of these interventions and hospital transfers may be preventable and could be considered as inappropriate by prehospital emergency medical personnel. The study aimed to understand Belgian emergency physicians' and emergency nurses' perspectives on emergency calls and interventions in NHs and investigate factors contributing to their perception of inappropriateness. Methods: An exploratory non-interventional prospective study was conducted in Belgium among emergency physicians and emergency nurses, currently working in prehospital emergency medicine. Electronic questionnaires were sent out in September, October and November 2023. Descriptive statistics were used to analyze the overall results, as well as to compare the answers between emergency physicians and emergency nurses about certain topics. Results: A total of 114 emergency physicians and 78 nurses responded to the survey. The mean age was 38 years with a mean working experience of 10 years in prehospital healthcare. Nursing home staff were perceived as understaffed and lacking in competence, with an impact on patient care especially during nights and weekends. General practitioners were perceived as insufficiently involved in the patient's care, as well as often unavailable in times of need, leading to activation of Emergency Medical Services (EMS) and transfers of nursing home residents to the Emergency Department (ED). Advance directives were almost never available at EMS interventions and transfers were often not in accordance with the patient's wishes. Palliative care and pain treatment were perceived as insufficient. Emergency physicians and nurses felt mostly disappointed and frustrated. Additionally, differences in perception were noted between emergency physicians and nurses regarding certain topics. Emergency nurses were more convinced that the nursing home physician should be available 24/7 and that transfers could be avoided if nursing home staff had more authority regarding medical interventions. Emergency nurses were also more under the impression that pain management was inadequate, and emergency physicians were more afraid of the medical implications of doing too little during interventions than emergency nurses. Suggestions to reduce the number of EMS interventions were more general practitioner involvement (82%), better nursing home staff education/competences (77%), more nursing home staff (67%), mobile palliative care support teams (65%) and mobile geriatric nursing intervention teams (52%). Discussion and conclusion: EMS interventions in nursing homes were almost never seen as necessary or indicated by emergency physicians and nurses, with the appropriate EMS level almost never being activated. The following key issues were found: shortages in numbers and competence of nursing home staff, insufficient primary care due to the unavailability of the general practitioner as well as a lack of involvement in patient care, and an absence of readily available advance directives. General practitioners should be more involved in the decision to call the Emergency Medical Services (EMS) and to transfer nursing home residents to the Emergency Department. Healthcare workers should strive for vigilance regarding the patients' wishes. The emotional burden of deciding on an avoidable hospital admission of nursing home residents, perhaps out of fear for medico-legal consequences if doing too little, leaves the emergency physicians and nurses frustrated and disappointed. Improvements in nursing home staffing, more acute and chronic general practitioner consultations, and mobile geriatric and palliative care support teams are potential solutions. Further research should focus on the structural improvement of the above-mentioned shortcomings.

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