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BMC Medical Ethics Apr 2024The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among...
BACKGROUND
The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD.
METHODS
A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD.
RESULTS
Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a "person of trust" would be more appropriate than utilizing AD.
CONCLUSION
Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD.
Topics: Humans; Cross-Sectional Studies; Prospective Studies; Advance Directives; Palliative Care; Neoplasms; Oncologists
PubMed: 38600485
DOI: 10.1186/s12910-024-01046-8 -
Journal of Correctional Health Care :... Jun 2024Health care professionals and patients impacted by incarceration face unique medical, legal, and ethical issues. The frequency and nature of ethics consultations for...
Health care professionals and patients impacted by incarceration face unique medical, legal, and ethical issues. The frequency and nature of ethics consultations for these patients are underexplored. This study aimed to characterize the primary ethical issue and contextual features of ethics consultations involving patients impacted by incarceration. We conducted a qualitative concept content analysis of ethics consultations involving patients impacted by incarceration and calculated descriptive statistics of demographics to compare these patients with the broader population of patients impacted by incarceration at a single institution from January 1, 2015, through June 30, 2022. We identified 37,184 patients impacted by incarceration (people currently or formerly incarcerated or whose surrogate decision-maker is incarcerated) at our institution. Most were White (70%) and non-Hispanic (88%); 51% were male, 49% female. Individuals impacted by incarceration comprised 3% ( = 38) of ethics consults. Most were White (58%), male (79%), and hospitalized (92%). The primary ethical issues were surrogate decision-making (34%) and fiduciary duties (beneficence/nonmaleficence/best interest; 16%). The primary contextual feature was intra-family communication challenges (37%). Incarceration status impacts access to decision-makers and the provision of medically necessary care. Ethics consultation for women and individuals in outpatient and emergency settings could be underutilized. More education about ethics consultation services and coordination with correctional officials is recommended.
Topics: Humans; Male; Retrospective Studies; Female; Prisoners; Ethics Consultation; Adult; Middle Aged; Decision Making; Incarceration
PubMed: 38597931
DOI: 10.1089/jchc.23.10.0083 -
Pacing and Clinical Electrophysiology :... May 2024Patients ≥80 with implantable cardioverter-defibrillators (ICDs) have high rates of hospitalization and mortality, yet few have documented advance directives. We...
BACKGROUND
Patients ≥80 with implantable cardioverter-defibrillators (ICDs) have high rates of hospitalization and mortality, yet few have documented advance directives. We sought to determine the prevalence of advance directives in adults ≥80 years with ICDs, focusing on those with frailty and cognitive impairment.
METHODS
Prospective cohort study (July 2016-May 2019) in an electrophysiology clinic. Presence of advance directives (health care proxies [HCP] and living wills [LW], or medical orders for life-sustaining treatment [MOLST]) was determined by medical record review. Frailty and cognitive impairment were screened using 4-m gait speed and Mini-Cog.
RESULTS
77 Veterans were evaluated. Mean age 84 years, 100% male, 70% frail. Overall, 52 (68%) had an HCP and 37 (48%) had a LW/MOLST. Of 67 with cognitive testing, 36% were impaired. HCP documentation was similar among frail and non-frail (69% vs. 65%). LW/MOLST was more prevalent among frail versus non-frail (52% vs. 39%). There was no difference in HCP documentation by cognitive status (67%). A LW/MOLST was more frequent for cognitively impaired versus non-impaired (50% vs. 42%). Among 19 Veterans who were frail and cognitively impaired, 14 (74%) had an HCP and 11 (58%) had a LW/MOLST.
CONCLUSIONS
Most Veterans had a documented advance directive, but a significant minority did not. Simple frailty and cognitive screening tools can rapidly identify patients for whom discussion of advance directives is especially important.
Topics: Humans; Defibrillators, Implantable; Male; Female; Advance Directives; Aged, 80 and over; Prospective Studies; Cognitive Dysfunction; Frailty
PubMed: 38597183
DOI: 10.1111/pace.14983 -
Journal of the American Geriatrics... Apr 2024Documenting goals of care in the electronic health record is meant to relay patient preferences to other clinicians. Evaluating the content and documentation of nurse...
BACKGROUND
Documenting goals of care in the electronic health record is meant to relay patient preferences to other clinicians. Evaluating the content and documentation of nurse and social worker led goals of care conversations can inform future goals of care initiative efforts.
METHODS
As part of the ADvancing symptom Alleviation with Palliative Treatment trial, this study analyzed goals of care conversations led by nurses and social workers and documented in the electronic health record. Informed by a goals of care communication guide, we identified five goals of care components: illness understanding, goals and values, end of life planning, surrogate, and advance directives. Forty conversation transcripts underwent content analysis. Through an iterative team process, we defined documentation accuracy as four categories: (1) Complete-comprehensive accurate documentation of the conversation, (2) Incomplete-partial documentation of the conversation, (3) Missing-discussed and not documented, and (4) Incorrect-misrepresented in documentation. We also defined-Not Discussed-for communication guide questions that were not discussed nor documented. A constant comparative approach was used to determine the presence or absence of conversation content in the documentation.
RESULTS
All five goals of care components were discussed in 67% (27/40) of conversation transcripts. Compared to the transcripts, surrogate (37/40, 93%) and advance directives (36/40, 90%) were often documented completely. Almost 40% of goals and values (15/40, 38%) and half of end of life planning (19/40, 48%) were incomplete. Illness understanding was missing (13/40, 33%), not discussed (13/40, 33%), or incorrect (2/40, 5%).
CONCLUSION
Nurse and social worker led goals of care conversations discussed and documented most components of the goals of care communication guide. Further research may guide how best to determine the relative importance of accuracy, especially in the broad setting of incomplete, missing, and incorrect EHR documentation.
PubMed: 38593240
DOI: 10.1111/jgs.18913 -
Frontiers in Health Services 2024To support rigorous evaluation across a national portfolio of grants, the United States Department of Veterans Affairs (VA) Office of Rural Health (ORH) adopted an...
INTRODUCTION
To support rigorous evaluation across a national portfolio of grants, the United States Department of Veterans Affairs (VA) Office of Rural Health (ORH) adopted an analytic framework to guide their grantees' evaluation of initiatives that reach rural veterans and to standardize the reporting of outcomes and impacts. Advance Care Planning via Group Visits (ACP-GV), one of ORH's Enterprise-Wide Initiatives, also followed the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. ACP-GV is a national patient-centered intervention delivered in a large, veterans integrated healthcare system. This manuscript describes how RE-AIM was used to evaluate this national program and lessons learned from ORH's annual reporting feedback to ACP-GV on their use of the framework to describe evaluation impacts.
METHODS
We used patient, provider, and site-level administrative health care data from the VA Corporate Data Warehouse and national program management databases for federal fiscal years (FY) spanning October 1, 2018-September 30, 2023. Measures included cumulative and past FY metrics developed to assess program impacts.
RESULTS
RE-AIM constructs included the following cumulative and annual program evaluation results. ACP-GV reached 54,167 unique veterans, including 19,032 unique rural veterans between FY 2018 to FY 2023. During FY 2023, implementation adherence to the ACP-GV model was noted in 91.7% of program completers, with 55% of these completers reporting a knowledge increase and 14% reporting a substantial knowledge increase (effectiveness). As of FY 2023, 66 ACP-GV sites were active, and 1,556 VA staff were trained in the intervention (adoption). Of the 66 active sites in FY 2023, 27 were sites previously funded by ORH and continued to offer ACP-GV after the conclusion of three years of seed funding (maintenance).
DISCUSSION
Lessons learned developing RE-AIM metrics collaboratively with program developers, implementers, and evaluators allowed for a balance of clinical and scientific input in decision-making, while the ORH annual reporting feedback provided specificity and emphasis for including both cumulative, annual, and rural specific metrics. ACP-GV's use of RE-AIM metrics is a key step towards improving rural veteran health outcomes and describing real world program impacts.
PubMed: 38590731
DOI: 10.3389/frhs.2024.1210166 -
AJOB Empirical Bioethics Apr 2024According to some medical ethicists and professional guidelines, there is no ethical difference between withholding and withdrawing life-sustaining treatment. However,...
BACKGROUND
According to some medical ethicists and professional guidelines, there is no ethical difference between withholding and withdrawing life-sustaining treatment. However, medical professionals do not always agree with this notion. Patients and their families may also not regard these decisions as equivalent. Perspectives on life-sustaining treatment potentially differ between cultures and countries. This study compares Japanese physicians' and citizens' attitudes toward hypothetical cases of withholding and withdrawing life-sustaining treatment.
METHODS
Ten vignette cases were developed. A web-based questionnaire was administered to 457 citizens and 284 physicians to determine whether they supported withholding or withdrawing treatment.
RESULTS
In a case where a patient had an advance directive refusing ventilation, 77% of the physicians and 68% of the citizens chose to withhold treatment. In a case where there was an advance directive but the patient's family requested treatment, 55% of the physicians and 45% of the citizens chose to withhold the ventilator. When a family requested withdrawal of the ventilator but patient wishes were unknown, 19% of the physicians and 48% of the citizens chose to withdraw the ventilator. However, when the patient had also indicated their wishes in writing, 49% of the physicians and 66% of the citizens chose to withdraw treatment. More physicians were prepared to withdraw dialysis (84%) and artificial nutrition (81%) at a patient's request than mechanical ventilation (49%).
CONCLUSIONS
A significant proportion of Japanese physicians and citizens were reluctant to withhold or withdraw life-sustaining treatment, even in cases where the patient had indicated their wishes in writing. They were more likely to withhold than withdraw treatment, and more likely to withdraw artificial nutrition than mechanical ventilation. Japanese physicians gave significant weight to family views about treatment but were less likely to agree to withdraw treatment than citizens, indicating a potential source of conflict in clinical settings.
PubMed: 38588396
DOI: 10.1080/23294515.2024.2336907 -
International Journal of Law and... 2024People with impaired decision-making capacity enjoy the same rights to access technology as people with full capacity. Our paper looks at realising this right in the...
People with impaired decision-making capacity enjoy the same rights to access technology as people with full capacity. Our paper looks at realising this right in the specific contexts of artificial intelligence (AI) and mental capacity legislation. Ireland's Assisted Decision-Making (Capacity) Act, 2015 commenced in April 2023 and refers to 'assistive technology' within its 'communication' criterion for capacity. We explore the potential benefits and risks of AI in assisting communication under this legislation and seek to identify principles or lessons which might be applicable in other jurisdictions. We focus especially on Ireland's provisions for advance healthcare directives because previous research demonstrates that common barriers to advance care planning include (i) lack of knowledge and skills, (ii) fear of starting conversations about advance care planning, and (iii) lack of time. We hypothesise that these barriers might be overcome, at least in part, by using generative AI which is already freely available worldwide. Bodies such as the United Nations have produced guidance about ethical use of AI and these guide our analysis. One of the ethical risks in the current context is that AI would reach beyond communication and start to influence the content of decisions, especially among people with impaired decision-making capacity. For example, when we asked one AI model to 'Make me an advance healthcare directive', its initial response did not explicitly suggest content for the directive, but it did suggest topics that might be included, which could be seen as setting an agenda. One possibility for circumventing this and other shortcomings, such as concerns around accuracy of information, is to look to foundational models of AI. With their capabilities to be trained and fine-tuned to downstream tasks, purpose-designed AI models could be adapted to provide education about capacity legislation, facilitate patient and staff interaction, and allow interactive updates by healthcare professionals. These measures could optimise the benefits of AI and minimise risks. Similar efforts have been made to use AI more responsibly in healthcare by training large language models to answer healthcare questions more safely and accurately. We highlight the need for open discussion about optimising the potential of AI while minimising risks in this population.
Topics: Humans; Artificial Intelligence; Mental Competency; Ireland; Decision Making; Advance Directives
PubMed: 38579525
DOI: 10.1016/j.ijlp.2024.101985 -
Journal of Pain and Symptom Management Jul 2024Despite being one of the fastest growing ethnic groups in the U.S., there exists a gap in how treatment preferences among Chinese Americans are expressed and enacted...
CONTEXT
Despite being one of the fastest growing ethnic groups in the U.S., there exists a gap in how treatment preferences among Chinese Americans are expressed and enacted upon in inpatient settings.
OBJECTIVES
To compare the rates of advance care documentation and life-sustaining treatment between Chinese American and White American ICU decedents.
METHODS
In this matched retrospective decedent cohort study, we included four ICUs within a tertiary medical center located in a Chinatown neighborhood. The Chinese American cohort included adult patients during the terminal admission in the ICU with primary language identified as Chinese (Mandarin, Cantonese, Taishanese). The White American cohort was matched according to age, sex, year of death, and admitting diagnosis.
RESULTS
We identified 154 decedents in each cohort. Despite similar odds on admission, Chinese American decedents had higher odds of DNR completion (OR 1.82; 95%CI 0.99-3.40) and DNI completion (OR 1.81; 95%CI, 1.07-1.57) during the terminal ICU admission. Although Chinese American decedents had similar odds of intubation (aOR 0.90; 95%CI, 0.55-1.48), a higher proportion signed a DNI after intubation (41% vs 25%). Chinese American decedents also had higher odds of CPR (aOR 2.03; 95%CI, 1.03-41.6) with three Chinese American decedents receiving CPR despite a signed DNR order (12% vs 0%).
CONCLUSIONS
During terminal ICU admissions, Chinese American decedents were more likely to complete advance care documentation and to receive CPR than White American decedents. Changes in code status were more common for Chinese Americans after intubation. Further research is needed to understand these differences and identify opportunities for goal-concordant care.
Topics: Humans; Male; Female; Asian; Aged; Retrospective Studies; Intensive Care Units; Middle Aged; Life Support Care; Documentation; White People; Terminal Care; Aged, 80 and over; United States; Resuscitation Orders; Advance Directives; Advance Care Planning
PubMed: 38574875
DOI: 10.1016/j.jpainsymman.2024.03.025 -
Journal of Palliative Medicine Apr 2024Some clinicians suspect that patients with do-not-resuscitate (DNR) orders receive less aggressive care. Extrapolation from code status to goals of care could cause...
Some clinicians suspect that patients with do-not-resuscitate (DNR) orders receive less aggressive care. Extrapolation from code status to goals of care could cause significant harm. This study asked the question: Do DNR orders in the intensive care unit (ICU) lead to a decrease in invasive interventions? This was a retrospective cohort study of ICU patients from three teaching hospitals. All ICU patients were assessed for inclusion. Exclusion criteria were medical futility and death, comfort care, or ICU discharge <48 hours after DNR initiation. Five hundred thirty-six patients met inclusion criteria. One hundred forty-five were included in the final analysis. Primary outcomes were occurrence of invasive interventions after DNR initiation-surgical operation, central line, ventilation, dialysis, or other procedure. Secondary outcomes were antibiotic administration, blood transfusion, mortality, and discharge location. Patients with DNR orders underwent fewer surgical operations (14.5% vs. 31.1%, = 0.002), but more central lines (42.1% vs. 23.0%, = 0.009), ventilator use (49.0% vs. 18.9%, < 0.001), and dialysis (20.0% vs. 4.1%, = 0.002), compared with patients without DNR orders. Transfusions and antibiotic use decreased similarly over admission for both groups (transfusions: β = 1.25; = 0.59; and antibiotics: β = 1.44; = 0.27). Mortality and hospice discharges were higher for DNR patients ( < 0.001.). DNR status did not decrease the number of nonoperative interventions patients received as compared with full code counterparts. Although differences in populations existed, patients with DNR orders were likely to receive a similar number of invasive interventions. This finding suggests that providers do not wholesale limit these options for patients with code status limitations.
Topics: Humans; Resuscitation Orders; Retrospective Studies; Renal Dialysis; Intensive Care Units; Anti-Bacterial Agents
PubMed: 38574337
DOI: 10.1089/jpm.2023.0289 -
BMC Medical Ethics Apr 2024Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low...
BACKGROUND
Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs.
METHODS
An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023.
RESULTS
A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence.
CONCLUSION
The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.
Topics: Adult; Humans; Female; Portugal; Cross-Sectional Studies; Advance Directives; Attitude; Health Knowledge, Attitudes, Practice; European People
PubMed: 38570826
DOI: 10.1186/s12910-024-01043-x