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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 -
Cureus Dec 2023Background End-of-life care is essential for individuals with advanced illness and their families, providing comfort, symptom control, and dignity in the final year of...
Background End-of-life care is essential for individuals with advanced illness and their families, providing comfort, symptom control, and dignity in the final year of life. Additionally, physician competence requires the ability to communicate, make decisions, and create relationships in end-of-life care. This study assesses family physicians' knowledge and attitude regarding end-of-life care in Taif, Saudi Arabia. Methods This descriptive cross-sectional study conducted between October and November 2021 assessed the knowledge and attitudes of 163 family physicians in Taif City, Saudi Arabia, regarding end-of-life care. Using a convenient sampling technique, an adapted and validated questionnaire was administered electronically, collecting sociodemographic information and assessing participants' knowledge and attitudes. Data were analyzed using descriptive statistics in Statistical Product and Service Solutions (SPSS, version 28) (IBM SPSS Statistics for Windows, Armonk, NY). Results Findings included that 41.1% of residents believed the patient and family should be informed about diagnoses and prognoses in advanced diseases. At the same time, attitudes varied, with 45.4% agreeing that discussing such information could lead to patient depression and 42.9% believing it held no privilege for patients. Additionally, 57.7% recognized that grief reactions would occur, but patients would eventually adjust, and 44.8% agreed that discussing diagnoses would decrease patient anxiety. However, limited awareness of advance directives was evident, with 12.3% reporting being well aware and 45.4% having never heard of them. There was uncertainty and hesitancy regarding Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, with 39.9% being well aware and 46% having heard of it without a strong understanding. Conclusion The findings revealed a mixed landscape, with physicians demonstrating awareness of the importance of transparent communication but needing more knowledge in areas such as advance directives and complex decision-making. The study highlighted the need for targeted education to address these gaps and promote a more informed and consistent approach to end-of-life care.
PubMed: 38229810
DOI: 10.7759/cureus.50652 -
Journal of Intensive Care Jan 2024The limitation of life sustaining treatments (LLST) causes ethical dilemmas even in patients faced with poor prognosis, which applies to many patients admitted to a...
BACKGROUND
The limitation of life sustaining treatments (LLST) causes ethical dilemmas even in patients faced with poor prognosis, which applies to many patients admitted to a Neurocritical Care Unit (NCCU). The effects of social and cultural aspects on LLST in an NCCU population remain poorly studied.
METHODS
All NCCU patients between 01.2018 and 08.2021 were included. Medical records were reviewed for: demographics, diagnosis, severity of disease, and outcome. Advance directives (AD) and LLST discussions were reviewed evaluating timing, degree, and reason for LLST. Social/cultural factors (nationality, language spoken, religion, marital status, relationship to/sex of legal representative) were noted. Associations between these factors and the patients' sex, LLST timing, and presence of AD were evaluated.
RESULTS
Out of 2975 patients, 12% of men and 10.5% of women underwent LLST (p = 0.30). Women, compared to men, more commonly received withdrawal instead of withholding of life sustaining treatments (57.5 vs. 45.1%, p = 0.028) despite comparable disease severity. Women receiving LLST were older (73 ± 11.7 vs. 69 ± 14.9 years, p = 0.005) and often without a partner (43.8 vs. 25.8%, p = 0.001) compared to men. AD were associated with female sex and early LLST, but not with an increased in-hospital mortality (57.1 vs. 75.2% of patients with and without AD respectively).
CONCLUSIONS
In patients receiving LLST, the presence of an AD was associated with an increase of early LLST, but not with an increased in-hospital mortality. This supports the notion that the presence of an AD is primarily an expression of the patients' will but does not per se predestine the patient for an unfavorable outcome.
PubMed: 38225647
DOI: 10.1186/s40560-023-00714-y -
Journal of Alzheimer's Disease : JAD 2024The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with... (Observational Study)
Observational Study
BACKGROUND
The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD).
OBJECTIVE
To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes.
METHODS
The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP.
RESULTS
The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics.
CONCLUSIONS
ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.
Topics: Humans; Female; Aged; Male; Palliative Care; Caregivers; Quality of Life; Dementia; Nursing Homes; Alzheimer Disease
PubMed: 38217594
DOI: 10.3233/JAD-230486 -
PloS One 2024Palynological analysis of surface soil and sub-surface sediments from the outwash plain of Hamtah Glacier, Lahaul-Spiti, India, has brought out the vegetation and...
Palynological analysis of surface soil and sub-surface sediments from the outwash plain of Hamtah Glacier, Lahaul-Spiti, India, has brought out the vegetation and climatic changes in the area during the last 1580 years. The arboreal and non-arboreal pollen ratio (AP/NAP) has been used to demarcate the different vegetation and climatic zones, complemented by the frequencies of the broad-leaved taxa. Lower values of thermophilous, broad-leaved arboreal taxa, indicate that the region experienced cold-arid conditions between 1580 and 1330 yr BP (AD 370-620); which can be related to the Dark Ages Cold Period (DACP). Thereafter, between 1330 and 950 yr BP (AD 620-1000), a rejuvenation of the broad-leaved elements reflects the initiation of a comparatively warm and moist phase, marking the Medieval Climatic Anomaly (MCA) in the region. The warm-moist phase was, however, short-lived, and from 950 yr BP to the Present (AD 1000 onwards), the region saw a return to cold-arid conditions, as evidenced by a sharp fall in the AP/NAP ratio. This cold-arid phase was, nevertheless, punctuated by a warm-moist period during 790 to 680 yr BP (AD 1160-1270), which marks the terminal phase of the MCA. After the termination of the MCA, the Little Ice Age (LIA) is well-marked in the area. The culmination of the long cold-arid regime is characterized by warmer conditions over the last 160 years, which is the manifestation of the Current Warm Period (CWP). Magnetic susceptibility (χlf) and sediment geochemistry (Weathering Index of Parker) were also attempted to have a multi-proxy approach, and show a general compatibility with the palynological data. The palaeoclimatic evidences suggest shorter warm periods and extended colder phases during the last 1580 years; in this high-altitude, cold-desert, Trans Himalayan region.
Topics: Climate Change; Himalayas; India; Advance Directives; Cognition; Trees
PubMed: 38198444
DOI: 10.1371/journal.pone.0295785 -
Journal of Intensive Care Jan 2024Patients in intensive care units (ICUs) often require quality palliative care for relief from various types of suffering. To achieve quality palliative care, specific...
BACKGROUND
Patients in intensive care units (ICUs) often require quality palliative care for relief from various types of suffering. To achieve quality palliative care, specific goals need to be identified, measured, and reported. The present study aimed to develop quality indicators (QIs) for palliative care in ICUs, based on a systematic review and modified Delphi method, and test their feasibility by reviewing electronic medical record (EMR) data.
METHODS
The current study was performed in two phases: the development of QIs using the modified Delphi method, and pilot-testing the quality of palliative care in ICUs based on EMR review. The pilot test included 262 patients admitted to the general or emergency ICU at a university hospital from January 1, 2019, to June 30, 2019.
RESULTS
A 28-item QI set for palliative care in ICUs was developed based on the consensus of 16 experts. The Delphi process resulted in low measurability ratings for two items: "Assessment of the patient's psychological distress" and "Assessment of the patient's spiritual and cultural practices." However, these items were determined to be important for quality care from the perspective of holistic assessment of distress and were adopted in the final version of the QI set. While the pilot test results indicated the feasibility of the developed QIs, they suggested that the frequency of care performance varied, and certain aspects of palliative care in ICUs needed to be improved, namely (1) regular pain assessment, (2) identification of the patient's advance directive and advance care planning for treatment, (3) conducting an interdisciplinary family conference on palliative care, and (4) assessment of psychological distress of family members.
CONCLUSIONS
The QI set, developed using the modified Delphi method and tested using EMR data, provided a tool for assessing the quality of palliative care in ICUs. In the two ICUs considered in this study, aspects of the palliative care process with a low performance frequency were identified, and further national surveys were recommended. It is necessary to conduct ongoing surveys at more facilities to improve the quality of palliative care in ICUs.
PubMed: 38195590
DOI: 10.1186/s40560-023-00713-z -
BMC Geriatrics Jan 2024The need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to...
BACKGROUND
The need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to palliative care, yet little is known about the care provided to people with dementia at the end of life. This study aimed to establish evidence related to end-of-life care for people dying with dementia in hospital compared to other settings.
METHODS
A retrospective clinical audit of people who had a diagnosis of dementia and had accessed services within a local health district, who died between 2015 and 2019, was conducted. A total of 705 people were identified, and a subset of 299 people randomly selected for manual audit. Chi-square p-values were used to compare the place of death, and a t-test or non-parametric test was used to assess the significance of the difference, as appropriate. Measures of functional decline within one month of death were assessed using mixed effects logistic regression models.
RESULTS
The characteristics of people differed by place of death, with people who died in hospital more likely to be living at home and to not have a spouse. Less than 1 in 5 people had advance care directives or plans. Many were still being actively treated at the time of death: almost half of people who died in hospital had an investigation in their final 72 hours, less than half of people were coded as receiving palliative care at death, and more than 2 in 3 people did not get access to specialist palliative care. Declining function was associated with the terminal phase.
CONCLUSION
This study provides novel insights for those providing end-of-life care for people with dementia. Healthcare professionals and policy makers should consider how demographic characteristics relate to the places people with dementia receive end-of-life care. The care provided to people with dementia in the last year of their life highlights the need for more support to prepare advance care documentation and timely consideration for palliative care. Changes in markers of nutritional status and function in people with advanced dementia may help with identification of terminal phases.
Topics: Humans; Clinical Audit; Dementia; Hospitals; Retrospective Studies; Terminal Care
PubMed: 38195437
DOI: 10.1186/s12877-023-04449-1 -
BMC Medical Ethics Jan 2024On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical...
Towards the implementation of law n. 219/2017 on informed consent and advance directives for patients with psychiatric disorders and dementia. Physicians' knowledge, attitudes and practices in four northern Italian health care facilities.
BACKGROUND
On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person's autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law.
METHODS
A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation).
RESULTS
Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians' opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered.
CONCLUSIONS
Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations.
Topics: Humans; Health Knowledge, Attitudes, Practice; Cognition Disorders; Informed Consent; Advance Directives; Italy; Dementia
PubMed: 38184541
DOI: 10.1186/s12910-023-00997-8 -
BMC Palliative Care Jan 2024The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home.
BACKGROUND
The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home.
PURPOSE
To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic.
METHODS
A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the interRAI Palliative Care instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14, 2019 to March 16, 2020) and COVID cohort (March 17, 2020 to May 18, 2021). A propensity score analysis was used to match (using nearest neighbour matching) on 21 covariates, resulting in a sample size of 2479 unique interRAI Palliative Care assessments in each cohort. Alternative propensity score methods were explored as part of a sensitivity analysis.
RESULTS
After matching the pre-COVID and COVID cohorts, five of the 16 QIs had statistically significant differences in the QI rates (change from pre-COVID to COVID): decrease in prevalence of severe or excruciating daily pain (p = 0.03, effect size=-0.08), decrease in prevalence of caregiver distress (p = 0.02, effect size=-0.06), decrease in prevalence of negative mood (p = 0.003, effect size=- 0.17), decrease in prevalence of a delirium-like syndrome (p = 0.001, effect size=-0.25) and decrease in prevalence of nausea or vomiting (p = 0.04, effect size=-0.06). While the alternative propensity score methods produced slightly different results, no clinically meaningful differences were seen between the cohorts when effect sizes were examined. All methods were in agreement regarding the highest QI rates, which included the prevalence of shortness of breath with activity, no advance directives, and fatigue.
CONCLUSION
This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries, and in creating benchmarks for determining acceptable rates of different QIs.
Topics: Humans; Pandemics; Quality Indicators, Health Care; Retrospective Studies; COVID-19; Home Care Services; Terminal Care; Ontario; Pain; Death; Palliative Care
PubMed: 38178110
DOI: 10.1186/s12904-023-01336-9