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PloS One 2024The All4Children project addresses the urgent need to transition from institutionalization to family-based care for out-of-home children in Portugal. Despite evidence...
BACKGROUND
The All4Children project addresses the urgent need to transition from institutionalization to family-based care for out-of-home children in Portugal. Despite evidence highlighting the detrimental effects of institutionalization, only a small percentage of children (less than 4%) are currently placed in family foster care in the country. In response to European directives for deinstitutionalization, Portuguese legislation now prioritizes non-kinship family foster care as the preferred alternative for young children in need of care. To facilitate this transition, the Integrated Model of Family Foster Care (MIAF) was developed, offering a comprehensive framework covering the entire spectrum of family foster care.
OBJECTIVE
This research aims to investigate the initial implementation stage of the MIAF to promote high-quality family foster care in Portugal.
METHOD
The study will conduct a mixed-method and longitudinal research project in family foster care agencies across different regions of Portugal, focusing on evaluating the implementation and outcomes of the MIAF model using a multi-informant and multi-method approach. The participants will include caseworkers, children aged 0-9 years entering foster care, and their respective foster families enrolled in the MIAF program. Process evaluation will assess fidelity, feasibility, appropriateness, and acceptability of MIAF modules, while outcome evaluation will examine child safety, stability, well-being, as well as foster family well-being and quality of relational care.
OUTCOMES
The insights gained from this research initiative will serve as a foundation for the ongoing enhancement of MIAF. Consequently, this project has the capacity to advance evidence-based child welfare practices by refining processes and strategies to better serve vulnerable children and youth.
CONCLUSION
Facilitated by a multidisciplinary team, this project will contribute to advancing research in the field, enhancing practice, and informing policy during a pivotal stage of deinstitutionalization in Portugal.
Topics: Humans; Portugal; Foster Home Care; Child; Child, Preschool; Infant; Infant, Newborn; Male; Female; Longitudinal Studies
PubMed: 38787886
DOI: 10.1371/journal.pone.0304244 -
International Journal of Law and... 2024In 2019, the Council of Europe agreed to urge member states to take steps toward total abolition of psychiatric coercive measures.
BACKGROUND
In 2019, the Council of Europe agreed to urge member states to take steps toward total abolition of psychiatric coercive measures.
AIMS
To test if this aspiration is perceived as realistic and what the alternative would be in the event of a total abolition, we surveyed members of the European FOSTREN network of mental health practitioners and researchers, which is specifically dedicated to exchanging knowledge on reducing psychiatric coercion to its minimum.
METHODS
Web-based survey. Categorical responses were analyzed using frequencies, and free text responses were analyzed through thematic analysis.
RESULTS
In total, out of 167 invitations to FOSTREN network members, 76 responded to the survey (Response Rate 45.5%). A minority (31%) of participating experts dedicated to the reduction of psychiatric coercive measures believed a total abolition to be an achievable goal. A commonly held belief was that total abolition is not achievable because mental health disorders are difficult to treat and may cause violence, necessitating coercion, and there is a need to protect the involved persons from harm. Those responding that complete abolition is achievable argued that the consequences of coercion outweigh any gains and indicated that use of advance directives are sufficient as alternatives to coercion.
CONCLUSION
Of a European group of experts specifically dedicated to the reduction of psychiatric coercion who participated in this questionnaire study, a minority believed a total abolition be an achievable goal. The study adds to the empirical evidence of the feasibility of the aspiration to totally abolish involuntary measures in the mental health services from the perspective of experts.
Topics: Humans; Coercion; Mental Health Services; Europe; Mental Disorders; Surveys and Questionnaires; Feasibility Studies; Male; Female; Adult; Middle Aged; Commitment of Mentally Ill
PubMed: 38763063
DOI: 10.1016/j.ijlp.2024.101992 -
Journal of the American Geriatrics... May 2024Advance care planning (ACP) aims to ensure that patients receive goal-concordant care (GCC), which is especially important for racially or ethnically minoritized...
INTRODUCTION
Advance care planning (ACP) aims to ensure that patients receive goal-concordant care (GCC), which is especially important for racially or ethnically minoritized populations at greater risk of poor end-of-life outcomes. However, few studies have evaluated the impact of advance directives (i.e., formal ACP) or goals-of-care conversations (i.e., informal ACP) on such care. This study aimed to examine the relationship between each of formal and informal ACP and goal-concordant end-of-life care among older Americans and to determine whether their impact differed between individuals identified as White, Black, or Hispanic.
METHODS
We conducted a retrospective cohort study using 2012-2018 data from the biennial Health and Retirement Study. We examined the relationships of interest using two, separate multivariable logistic regression models. Model 1 regressed a proxy report of GCC on formal and informal ACP and sociodemographic and health-related covariates. Model 2 added interaction terms between race/ethnicity and the two types of ACP.
RESULTS
Our sample included 2048 older adults. There were differences in the proportions of White, Black, and Hispanic decedents who received GCC (83.1%, 75.3%, and 71.3%, respectively, p < 0.001) and in the use of each type of ACP by racial/ethnic group. In model 1, informal compared with no informal ACP was associated with higher odds of GCC (adjusted odds ratio = 1.38 [95% confidence interval, 1.05-1.82]). In model 2, Black decedents who had formal ACP were more likely to receive GCC than those who did not, but there were no statistically significant differences between decedents of different racial/ethnic groups who had no ACP, informal ACP only, or both types of ACP.
CONCLUSIONS
Our results build on previous work by indicating the importance of incorporating goals-of-care conversations into routine healthcare for older adults and encouraging ACP usage among racially and ethnically minoritized populations who use ACP tools at lower rates.
PubMed: 38760957
DOI: 10.1111/jgs.18971 -
Journal of the American Medical... May 2024Home health care patients who are at risk for becoming Incapacitated with No Evident Advance Directives or Surrogates (INEADS) may benefit from timely intervention to...
OBJECTIVES
Home health care patients who are at risk for becoming Incapacitated with No Evident Advance Directives or Surrogates (INEADS) may benefit from timely intervention to assist them with advance care planning. This study aimed to develop natural language processing algorithms for identifying home care patients who do not have advance directives, family members, or close social contacts who can serve as surrogate decision-makers in the event that they lose decisional capacity.
DESIGN
Cross-sectional study of electronic health records.
SETTING AND PARTICIPANTS
Patients receiving post-acute care discharge services from a large home health agency in New York City in 2019 (n = 45,390 enrollment episodes).
METHODS
We developed a natural language processing algorithm for identifying information documented in free-text clinical notes (n = 1,429,030 notes) related to 4 categories: evidence of close relationships, evidence of advance directives, evidence suggesting lack of close relationships, and evidence suggesting lack of advance directives. We validated the algorithm against Gold Standard clinician review for 50 patients (n = 314 notes) to calculate precision, recall, and F-score.
RESULTS
Algorithm performance for identifying text related to the 4 categories was excellent (average F-score = 0.91), with the best results for "evidence of close relationships" (F-score = 0.99) and the worst results for "evidence of advance directives" (F-score = 0.86). The algorithm identified 22% of all clinical notes (313,290 of 1,429,030) as having text related to 1 or more categories. More than 98% of enrollment episodes (48,164 of 49,141) included at least 1 clinical note containing text related to 1 or more categories.
CONCLUSIONS AND IMPLICATIONS
This study establishes the feasibility of creating an automated screening algorithm to aid home health care agencies with identifying patients at risk of becoming INEADS. This screening algorithm can be applied as part of a multipronged approach to facilitate clinician support for advance care planning with patients at risk of becoming INEADS.
PubMed: 38754475
DOI: 10.1016/j.jamda.2024.105019 -
BMC Palliative Care May 2024In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify... (Review)
Review
BACKGROUND
In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this.
AIM
The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness.
METHODS
In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global.
RESULTS
From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries.
CONCLUSIONS
Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.
Topics: Humans; Palliative Care; Advance Care Planning; Terminal Care
PubMed: 38750464
DOI: 10.1186/s12904-024-01445-z -
Zeitschrift Fur Gerontologie Und... May 2024Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of... (Review)
Review
Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of transformation in the course of a lifetime. If the ability to form a will is reduced, it might be difficult to satisfy the individual perception of a dignified treatment, which is of particular interest in terminal care. As illustrated by the presented case report, moral problems can arise when the patient's present verbal or non-verbal expressions are opposed to what is documented or what is estimated by dependants to be the individual's will. In clinical decision-making processes, the determination of the will via an advance directive can be overstated, which can go so far that human dignity is reduced to autonomy. A concept of dignity reduced to autonomy misses the point not only of a dignity-centered medical care but also of shared decision-making. In situations at the end of life other aspects, such as authenticity or self-actualization should be considered when respecting the individual's dignity. Medicine should as such not marginalize death but provide a care based on principles that focus on human interaction and respect for a comprehensive concept of dignity.
PubMed: 38743165
DOI: 10.1007/s00391-024-02308-1 -
Medizinische Klinik, Intensivmedizin... May 2024The advance directive and lasting power of attorney are instruments to strengthen patients' autonomy. A hospital-based palliative care consultation service can advise...
BACKGROUND
The advance directive and lasting power of attorney are instruments to strengthen patients' autonomy. A hospital-based palliative care consultation service can advise patients and family members about these instruments. This study investigates the need for such consultation among patients with life-limiting illness.
METHODS
This prospective observational study on intensive and non-intensive care units includes patients with a request for palliative care consultation. Patient-related factors were evaluated for their possible association with the presence or absence of advance directives or power of attorney. In addition, focus group interviews with members of the palliative care consultation team were carried out to identify barriers which prevent patients from drawing up such documents.
RESULTS
A total of 241 oncological and 53 non-oncological patients were included with a median age of 67 years; 69 (23%) patients were treated in the intensive care unit (ICU). Overall, 98 (33%) patients had advance directives, and 133 (45%) had determined a legal health care proxy in advance. A total of 52 patients died in hospital (17.7%). Only age and relationship status were associated with directives. In interviews, the following barriers were identified: information deficit, concern regarding discontinuation of treatment, loss of autonomy and wish to avoid a burden for the family.
CONCLUSION
The majority in this severely ill patient population lack advance directives. In order to remove barriers, more effective information and counseling is required about such directives. In particular, guidance should include potential clinical situations in which such directives are potentially beneficial.
PubMed: 38740593
DOI: 10.1007/s00063-024-01149-5 -
Journal of the American Board of Family... 2024Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study... (Randomized Controlled Trial)
Randomized Controlled Trial Comparative Study
PURPOSE
Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences.
METHODS
We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention.
RESULTS
All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, ). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others.
CONCLUSIONS
While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.
Topics: Humans; Advance Care Planning; Male; Female; Aged; Middle Aged; Primary Health Care; Patient Participation; Surveys and Questionnaires
PubMed: 38740474
DOI: 10.3122/jabfm.2023.230187R2 -
Resuscitation May 2024This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after...
AIM
This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after pediatric out-of-hospital cardiac arrest (OHCA).
METHODS
This is a retrospective, exploratory, descriptive analysis of patients < 18 years old admitted to the pediatric intensive care unit (ICU) after OHCA from 2011 to 2022 (n = 217) at an urban tertiary care, free-standing children's hospital. Outcomes of interest included: (1) whether a new advance care plan (ACP) (defined as a written advance directive including do not resuscitate and/or do not intubate) was ordered during hospitalization, and (2) whether the patient was discharged with new medical technology (defined as tracheostomy and/or feeding tube). Logistic regression models identified features associated with these outcomes.
RESULTS
Of the 217 patients, 78 patients (36%) had a new ACP placed during their admission. Of the survivors, 26% (27/102) were discharged home with new medical technology. Factors associated with ACP were greater change in Pediatric Cerebral Performance Category (PCPC) score (aOR = 1.49, 95% CI [1.28-1.73], p-value < 0.001) and palliative care consultation (aOR = 2.39, 95% CI [1.16-4.89], p-value 0.018). Factors associated with new medical technology were lower change in PCPC score (aOR = 0.76, 95% C.I. [0.61-0.95], p-value = 0.015) and palliative care consultation (aOR = 7.07, 95% CI [3.01-16.60], p-value < 0.001). There were no associations between area-based SDOH and outcomes.
CONCLUSIONS
Understanding factors associated with decision-making related to ACP after OHCA is critical to optimize counseling for families. Multi-institutional studies are warranted to identify whether these findings are generalizable.
PubMed: 38719070
DOI: 10.1016/j.resuscitation.2024.110233 -
Nursing Ethics May 2024Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients' Advance Directives (ADs) regarding...
Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients' Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer's patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer's patient and (2) claiming that there is no longer any personal equivalence between the AD's creator and the subject of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer's patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer's patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation.
PubMed: 38711348
DOI: 10.1177/09697330241247320