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BMC Health Services Research Feb 2024The United States envisions a 90% reduction in HIV infections by 2030. However, the COVID-19 pandemic disrupted the HIV continuum and disproportionately affected access...
BACKGROUND
The United States envisions a 90% reduction in HIV infections by 2030. However, the COVID-19 pandemic disrupted the HIV continuum and disproportionately affected access to social and health services for people at the highest vulnerability. This study shows how stakeholders in the State of Michigan handled disruptions and their key recommendations. As a case study, this study adds to the literature about preparedness for future pandemics.
METHODS
We interviewed 33 statewide Michigan HIV/AIDS Council members-practitioners, researchers, and community representatives, guiding service planning, improvement, and resource allocations, measuring group cohesiveness using a tested scale. We measured group cohesiveness as a proxy for how individual opinions reflected those of the Council as a group. We used qualitative questions to assess: (1) how the COVID-19 pandemic disrupted HIV prevention; (2) how disruptions were handled; and (3) recommendation to help address disruptions now and in the future. Using thematic analysis, we coded the interviews.
RESULTS
We found a high degree of cohesiveness. Participants agreed that the pandemic disrupted HIV prevention services (e.g., HIV testing, PrEP education, referrals to primary care, etcetera) offered by community organizations, hospital clinics, and health departments across the state. In response, they developed online and curbside services to maintain HIV services, abate social isolation, and address structural issues like lack of food and public transportation. We organized results in four categories: (1) HIV service disruptions (e.g., "Housing for women and children who are fleeing a legal situation"); (2) Responses to disruptions (e.g., "Some of them, we would say, hey, weather permitting, we'll come out to your car"); (3) Minoritized groups disproportionately affected (e.g., "Especially in my community, to get people if there's ever a vaccine, Black people are going to be the last people to take it"); and (4) Recommendations (below).
CONCLUSIONS
The pandemic unsettled and further exacerbated every aspect of HIV service provision. The main recommendation was to overhaul communication systems between government and organizations offering HIV services to mitigate disruptions and improve the chances of achieving a 90% reduction.
Topics: Child; Female; Humans; HIV Infections; Pandemics; COVID-19; Acquired Immunodeficiency Syndrome; Advance Directives
PubMed: 38350945
DOI: 10.1186/s12913-024-10609-9 -
Journal of Multidisciplinary Healthcare 2024Healthcare consumers are encouraged to develop an Advance Care Plan (ACP) to help to ensure their preferences are known and respected. However, the role of governing...
CONTEXT
Healthcare consumers are encouraged to develop an Advance Care Plan (ACP) to help to ensure their preferences are known and respected. However, the role of governing systems in the application of ACPs must be understood if patients' voices (expressed within this medium) are to be heard.
OBJECTIVE
To explore systemic barriers influencing Queensland public hospital doctors' application of the Advance Care Plans of hospitalized people with a neurodegenerative disorder.
METHODS
Using a constructivist grounded theory approach, 16 semi structured interviews were conducted with public hospital doctors. Data were inductively analysed using open and focused coding.
RESULTS
Analysis revealed two main themes: Practicing Medicine within a Legal Construct, and Delegitimizing ACP. Participants found the application of ACP in Queensland unduly complex, and they were inadequately prepared by education or training. Doctors maintained a dominant role in temporal medical decision-making and cited hospital practice culture for delegitimizing patient-owned ACPs.
CONCLUSION
The public healthcare system in Queensland exerts considerable influence over the degree to which ACPs influence decision-making. Despite the premise that ACPs give patients a powerful voice, hospital doctors often do not understand the underpinning law on which they depend when citing their responsibility for good medical practice. Systemic influences have contributed to a practice culture that has delegitimized the patient's voice when expressed through an ACP.
PubMed: 38343751
DOI: 10.2147/JMDH.S441969 -
BMC Palliative Care Feb 2024The COVID-19 pandemic led to an intensified fear and threat of dying, combined with dying and grieving in isolation, in turn significantly impacting nursing in...
BACKGROUND
The COVID-19 pandemic led to an intensified fear and threat of dying, combined with dying and grieving in isolation, in turn significantly impacting nursing in end-of-life situations. The study aims (1) to understand the lived experiences of nurses who provided care to end-of-life patients during COVID-19; and (2) to explore whether providing care under such circumstances altered the perspectives of these nurses regarding end-of-life care.
METHODS
Applying the phenomenological-interpretive qualitative approach, 34 in-depth semi-structured interviews were conducted between March 2020-May 2021 with nurses from eight hospitals in Israel who were recruited through purposive and snowball sampling. Thematic analysis was applied to identify major themes from the interviews.
RESULTS
Five main themes emerged from the analysis, including: (1) a different death; (2) difficulties in caring for the body after death; (3) the need for family at end-of-life; (4) weaker enforcement of advance care directives; and (5) prolonging the dying process.
DISCUSSION
During the pandemic, nurses encountered numerous cases of death and dying, while facing ethical and professional issues regarding end-of-life care. They were required to administer more aggressive care than usual and even necessary, leading to their increased moral distress. The nurses' ethical concerns were also triggered by the requirement to wrap the corpse in black garbage-like bags to prevent contagion, which they felt was abusing the dead. The findings also demonstrate how family presence at end-of-life is important for the nursing staff as well as the patient. Finally, end-of-life situations during the pandemic in Israel were managed in an individual and personal manner, rather than as a collective mission, as seen in other countries.
CONCLUSIONS
The study offers insights into the nurses' attitudes towards death, dying, and end-of-life care. An emphasis should be placed on the key elements that emerged in this study, to assist nurses in overcoming these difficulties during and after medical crises, to enhance end-of-life care and professionalism and decrease burnout.
Topics: Humans; Pandemics; Nursing Staff, Hospital; COVID-19; Terminal Care; Death; Nurses; Qualitative Research
PubMed: 38331781
DOI: 10.1186/s12904-024-01352-3 -
BMC Medical Education Feb 2024The concepts of advance care planning (ACP) and advance decisions/directives (ADs) are widely recognized around the world. The Patient Right to Autonomy Act in Taiwan,...
BACKGROUND
The concepts of advance care planning (ACP) and advance decisions/directives (ADs) are widely recognized around the world. The Patient Right to Autonomy Act in Taiwan, the first of its kind in Asia, went into effect in 2019. However, a lack of knowledge and confidence regarding ACP and ADs is a barrier for medical professionals in discussing ACP and ADs with their patients. In addition, in Asian countries, physicians tend to make family-centered decisions, which influence how they can implement ADs.
METHODS
Virtual reality (VR) is known for its immersive and interactive simulation experience and can upgrade medical education. We developed a VR teaching module to help medical professionals better understand ACP and ADs, with assessment tools integrated into the module. The participants were asked to answer seven knowledge items embedded in the module and fill out the surveys regarding attitudes toward ACP and ADs and confidence in implementing ADs before and after the module. They also reported behaviors related to ADs before and three months after the VR experience.
RESULTS
From July 2020 to June 2022, 30 physicians and 59 nurses joined the study, and 78.7% of them had no prior experience in hospice care. After learning from the VR module, all 89 participants were able to answer all seven items correctly. The results showed a slightly more positive attitude toward ACP and ADs (scores: 32.29 ± 3.80 versus 33.06 ± 3.96, p < .05) and more confidence in implementing ADs (scores: 13.96 ± 2.68 versus 16.24 ± 2.67, p < .001) after the VR module. Changes in AD-related behaviors (scores: 11.23 ± 4.01 versus 13.87 ± 4.11, p < .001) were also noted three months after the VR experience.
CONCLUSIONS
This study found that medical professionals may have better knowledge of ACP and ADs, slightly improved attitudes toward ACP and ADs, and greater confidence in implementing ADs after experiencing the VR module. Most importantly, the findings suggested that using a VR format may help motivate medical professionals to perform essential behaviors related to ADs, including introducing ADs to their patients and discussing ADs with their own family.
Topics: Humans; Advance Care Planning; Advance Directives; Attitude; Physicians; Virtual Reality
PubMed: 38317136
DOI: 10.1186/s12909-023-04990-y -
JAMA Network Open Jan 2024Evidence of effectiveness of advance care planning (ACP) strategies for patients receiving dialysis and their families is needed. (Randomized Controlled Trial)
Randomized Controlled Trial
IMPORTANCE
Evidence of effectiveness of advance care planning (ACP) strategies for patients receiving dialysis and their families is needed.
OBJECTIVES
To test the effectiveness of an ACP intervention to prepare patients and their surrogates for end-of-life (EOL) decision-making and to improve surrogate bereavement outcomes.
DESIGN, SETTING, AND PARTICIPANTS
This cluster randomized clinical trial, An Effectiveness-Implementation Trial of SPIRIT (Sharing Patients' Illness Representations to Increase Trust) in ESRD, was conducted from December 2017 to March 2023 and included 42 dialysis clinics in 5 US states (Georgia, New Mexico, North Carolina, Pennsylvania, and Virginia) randomized to provide intervention or usual care. Recruitment was from February 15, 2018, to January 31, 2022, and patient-surrogate dyads were followed up for 21 months (until January 17, 2023) or until patient death.
INTERVENTION
Each clinic selected 1 or 2 health care workers (eg, nurse practitioner, registered nurse, or social worker) to conduct 45- to 60-minute ACP discussions with dyads in the clinic or remotely. After March 13, 2020 (commencement of the COVID-19 emergency declaration), all discussions were conducted remotely. An ACP summary was placed in patients' medical records.
MAIN OUTCOMES AND MEASURES
The primary, 2-week preparedness outcomes were dyad congruence on EOL goals of care, patient decisional conflict, surrogate decision-making confidence, and a composite of dyad congruence and surrogate decision-making confidence. Secondary bereavement outcomes were anxiety, depression, and posttraumatic distress 3 months after patient death. To adjust for COVID-19 pandemic effects on bereavement outcomes, a variable to indicate the timing of baseline and 3-month assessment relative to the COVID-19 emergency declaration was created.
RESULTS
Of the 426 dyads enrolled, 231 were in the intervention clinics, and 195 were in the control clinics. Among all dyads, the mean (SD) patient age was 61.9 (12.7) years, and the mean (SD) surrogate age was 53.7 (15.4) years. At 2 weeks, after adjusting for baseline values, dyad congruence (odds ratio [OR], 1.61; 95% CI, 1.12-2.31; P = .001), decisional conflict scores (β, -0.10; 95% CI, -0.13 to -0.07; P < .001), and the composite (OR, 1.57; 95% CI, 1.06-2.34; P = .03) were higher in the intervention group than in the control group. Surrogate decision-making confidence was similar between groups (β, 0.06; 95% CI, -0.01 to 0.13; P = .12). Among 77 bereaved surrogates, after adjusting for baseline values and assessment timing, intervention group anxiety was lower than control group anxiety (β, -1.55; 95% CI, -3.08 to -0.01; P = .05); however, depression (β, -0.18; 95% CI, -2.09 to 1.73; P = .84) and posttraumatic distress (β, -0.96; 95% CI, -7.39 to 5.46; P = .75) were similar.
CONCLUSIONS AND RELEVANCE
In this randomized clinical trial, the ACP intervention implemented by health care workers at dialysis centers improved preparation for EOL decision-making but showed mixed effectiveness on bereavement outcomes. The ACP intervention implemented in dialysis centers may be an effective strategy to the dyad preparation for end-of-life care as opposed to the current focus on advance directives.
TRIAL REGISTRATION
ClinicalTrials.gov Identifier: NCT03138564.
Topics: Adult; Humans; Middle Aged; Renal Dialysis; Pandemics; Advance Care Planning; Death; Ambulatory Care Facilities; COVID-19
PubMed: 38289604
DOI: 10.1001/jamanetworkopen.2023.51511 -
Perspectives on Psychological Science :... Jan 2024Metacognitive feelings are affective experiences that concern the subject's mental processes and capacities. Paradigmatic examples include the feeling of familiarity,...
Metacognitive feelings are affective experiences that concern the subject's mental processes and capacities. Paradigmatic examples include the feeling of familiarity, the feeling of confidence, or the tip-of-the-tongue experience. In this article, we advance an account of metacognitive feelings based on the predictive-processing framework. The core tenet of predictive processing is that the brain is a hierarchical hypothesis-testing mechanism, predicting sensory input on the basis of prior experience and updating predictions on the basis of the incoming prediction error. According to the proposed account, metacognitive feelings arise out of a process in which visceral changes serve as cues to predict the error dynamics relating to a particular mental process. The expected rate of prediction-error reduction corresponds to the valence at the core of the emerging metacognitive feeling. Metacognitive feelings use prediction dynamics to model the agent's situation in a way that is both descriptive and directive. Thus, metacognitive feelings are not only an appraisal of ongoing cognitive performance but also a set of action policies. These action policies span predictive trajectories across bodily action, mental action, and interoceptive changes, which together transform the epistemic landscape within which metacognitive feelings unfold.
PubMed: 38285929
DOI: 10.1177/17456916231221976 -
JAMA Network Open Jan 2024Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical...
IMPORTANCE
Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated.
OBJECTIVE
To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life.
DESIGN, SETTING, AND PARTICIPANTS
This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany.
MAIN OUTCOMES AND MEASURES
Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed.
RESULTS
The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates.
CONCLUSIONS AND RELEVANCE
Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Topics: Infant, Newborn; Female; Infant; Humans; Middle Aged; Cross-Sectional Studies; Public Opinion; Death; Academies and Institutes; Advance Directives
PubMed: 38270948
DOI: 10.1001/jamanetworkopen.2023.53264 -
Frontiers in Psychiatry 2023To date, few randomized controlled trials of psilocybin with non-directive support exist for obsessive-compulsive disorder (OCD). Results and participant feedback from...
Safety, feasibility, tolerability, and clinical effects of repeated psilocybin dosing combined with non-directive support in the treatment of obsessive-compulsive disorder: protocol for a randomized, waitlist-controlled trial with blinded ratings.
BACKGROUND
To date, few randomized controlled trials of psilocybin with non-directive support exist for obsessive-compulsive disorder (OCD). Results and participant feedback from an interim analysis of an ongoing single-dose trial (NCT03356483) converged on the possibility of administering a higher fixed dose and/or more doses of psilocybin in future trials for presumably greater benefits.
OBJECTIVES
This trial aims to evaluate the safety, feasibility, tolerability, and clinical effects of two doses of psilocybin paired with non-directive support in the treatment of OCD. This trial also seeks to examine whether two doses of psilocybin lead to greater OCD symptom reduction than a single dose, and to elucidate psychological mechanisms underlying the effects of psilocybin on OCD.
DESIGN
A randomized (1:1), waitlist-controlled design with blinded ratings will be used to examine the effects of two doses of oral psilocybin paired with non-directive support vs. waitlist control on OCD symptoms. An adaptive dose selection strategy will be implemented (i.e., first dose: 25 mg; second dose: 25 or 30 mg).
METHODS AND ANALYSIS
This single-site trial will enroll 30 adult participants with treatment-refractory OCD. Aside from safety, feasibility, and tolerability metrics, primary outcomes include OCD symptoms assessed on the Yale-Brown Obsessive-Compulsive Scale - Second Edition (Y-BOCS-II). A blinded independent rater will assess primary outcomes at baseline and the primary endpoint at the end of the second dosing week. Participants will be followed up to 12 months post-second dosing. Participants randomized to waitlist will be rescreened after 7 weeks post-randomization, and begin their delayed treatment phase thereafter if still eligible.
ETHICS
Written informed consent will be obtained from participants. The institutional review board has approved this trial (protocol v. 1.7; HIC #2000032623).
DISCUSSION
This study seeks to advance our ability to treat refractory OCD, and catalyze future research seeking to optimize the process of psilocybin treatment for OCD through understanding relevant psychological mechanisms.: ClinicalTrials.gov, identifier NCT05370911.
PubMed: 38264632
DOI: 10.3389/fpsyt.2023.1278823 -
Healthcare (Basel, Switzerland) Jan 2024(1) Background: Advance directives (ADs) in Portugal have been legalized since 2012. What has been observed over time, from the few studies carried out, is that despite...
(1) Background: Advance directives (ADs) in Portugal have been legalized since 2012. What has been observed over time, from the few studies carried out, is that despite the positive attitudes in the population, there is a low level of adherence to ADs. To try to understand the reasons for these data, the current study aimed to explore and describe the experiences of the Portuguese population regarding AD. (2) Methods: For this exploratory and descriptive qualitative study, the researchers conducted open (unstructured) interviews with a convenience sample aged over 18 years until data saturation was achieved. (3) Results: A total of fifteen interviews were conducted-eight with women and seven with men. The following four categories emerged from the content analysis of the interviews: (1) AD literacy, (2) AD relevance, (3) AD attitudes, and (4) conditionalities for compiling the ADs. (4) Conclusions: The study pointed out the good receptivity of the participants to the ADs; however, literacy on this subject was low, and identifying the conditionalities in the development of ADs could contribute to improvements in implementation in the population. The data from this study suggest the need to implement measures to increase the literacy of the Portuguese population on ADs and review the legal framework for improving the accessibility of the citizen population. There is also a need to continue researching and obtain more evidence about the ways in which the Portuguese population perceives ADs; thus, in this way, a society can better respond to its citizens' right to freely exercise their prospective autonomy at the end of their lives.
PubMed: 38255083
DOI: 10.3390/healthcare12020195 -
Palliative Medicine Reports 2024Research suggests that language can impact medical decision-making, but few studies exist describing the variations in language to describe end-of-life nutrition and...
Language Variations in Describing Nutrition and Hydration Interventions in State Physician Orders for Life Sustaining Treatment Forms and the Implications for Advanced Dementia Patients.
BACKGROUND
Research suggests that language can impact medical decision-making, but few studies exist describing the variations in language to describe end-of-life nutrition and hydration interventions. The language contained in the Physician Orders for Life Sustaining Treatment (POLST) form varies across states, but this variation has not yet been fully analyzed. This investigation has implications for communicating with surrogates about the insertion of feeding tubes in advanced dementia patients, a common procedure in this population despite its potentially high risks and low benefits.
OBJECTIVE
Identify and analyze the variations in language related to end-of-life nutrition and hydration interventions in state POLST forms.
DESIGN
Descriptive study.
MEASUREMENTS
The most up-to-date POLST forms for each of the 50 US states and the District of Columbia as of August 2022 were analyzed for their descriptions of end-of-life nutrition and hydration interventions.
RESULTS
Fifty out of 51 (98%) forms referenced nutrition and/or hydration interventions. Four main modifiers of the word "nutrition" and/or "hydration" were identified: artificial (32%), artificially administered (56%), medically administered (14%), and assisted/medically assisted (18%). Forty-eight (96%) forms indicated an explicit option to forgo feeding tubes, and all of these forms described doing so with negatively valenced language.
CONCLUSIONS
The language describing end-of-life nutrition and hydration interventions and feeding tubes in state POLST forms is insufficiently specific and varies significantly across the country. These terms are at best ambiguous and at worst imply incorrect information. More precise language may assist in the difficult discussion between physicians and surrogates about inserting feeding tubes in advanced dementia patients.
PubMed: 38249835
DOI: 10.1089/pmr.2023.0029