Consideraciones bioéticas en el manejo de la esclerosis lateral amiotrófica: Una aproximación al quehacer fonoaudiológico

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.

Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

Misconception between palliative care and euthanasia among Thai general practitioners: a cross-sectional study.

BACKGROUND: Palliative care lower medical expenses and enhances quality of life, but misconception with euthanasia delays timely care and makes inappropriate patient management. OBJECTIVE: To examine the magnitude of misconceptions between palliative care and euthanasia among Thai general practitioners, explore the association with knowledge, attitudes, and practical experience, and assess the association between misconception and confidence in practicing and referring patients to palliative care centers. METHODS: All 144 general practitioners who were going to start residency training at Maharaj Nakorn Chiang Mai Hospital in 2021 participated in this observational cross-sectional study. A chi-square test was utilized to examine the relationship between misconception and knowledge, attitude, practical experience, confidence to practice, and confidence to refer patients. Multivariable logistic regression was carried out while controlling for age, sex, knowledge, attitude, and experience to examine the relationship between misconception and confidence to practice and refer patients for palliative care. Statistical significance was defined at p < 0.05. RESULTS: About 41% of general physicians had misconceptions regarding palliative care and euthanasia. High knowledge was associated with a lower level of misconception (p = 0.01). The absence of misconceptions was weakly associated with a higher level of confidence in practicing palliative care, with an adjusted odds ratio of 1.51 (95% confidence interval 0.73 to 3.10, p = 0.07). CONCLUSION: High misconception rates between palliative care and euthanasia among young Thai physicians might impact their confidence in delivering palliative care. Training initiatives for medical students and practitioners can mitigate misconceptions, fostering better palliative care utilization in Thailand.

Perception of Good Death and Level of Perceived Stress in Relatives of Palliative Care Patients.

This study aimed to examine the perception of a good death and the level of perceived stress in relatives of palliative care patients. Relatives of 110 patients hospitalized in a palliative care center constituted the research sample. A personal information form, the "Good Death Scale," and the "Perceived Stress Scale" were used for data collection. The patients' relatives defined good death as being with family members and living this process without suffering. The mean total Good Death Scale score of the relatives of palliative care patients was 54.86 ± 7.78, and their mean total Perceived Stress Scale score was 31.11 ± 10.10. These findings showed that patients' relatives had high perceptions of good death and that their stress levels were above average. To expand the scope of nursing care, it is important to know how patients' relatives are affected by this process. It is recommended that more studies be conducted on this subject.

Differences in discharge letter content: oncologists' vs. home care physicians' needs.

PURPOSE: To compare the details, oncologists include in discharge letters with what home care physicians need. Although discharge letters are important to share patients' information for home palliative care, few studies have compared the details, especially patients' emotions, regarding what oncologists include in discharge letters and home care physicians' needs. METHODS: This cross-sectional study was conducted by sending anonymous, self-administered questionnaires to 500 certified oncologists (OCs) and 500 directors of home care supporting clinics (HCs) in Japan between March and May 2023. The survey considered 20 potential items found in discharge letters, and compared rates of OCs including these items and HCs needs. RESULTS: Of 310 valid responses, 186 were from OCs (average age: 47.7; 29 females) and 124 from HCs (average age: 55.4; 9 females). Major items with lower inclusion rates for OCs included patients' emotions regarding medical conditions (58.4% in OCs vs. 92.6% in HCs, p < 0.001), families' emotions regarding medical conditions (60.0 vs. 92.6%, respectively, p < 0.001), patients' perceptions regarding medical conditions (84.9 vs. 94.3%, respectively, p = 0.011), families' perceptions regarding medical conditions (84.3 vs. 95.1%, respectively, p = 0.004), and potential late-onset treatment-related adverse events (79.3 vs. 92.6%, respectively, p = 0.002). Conversely, OCs included patients' activities of daily living more frequently (96.2 vs. 90.2%, respectively, p = 0.031). CONCLUSION: Transitioning to home-based palliative care may necessitate accurate information and consideration of patients' and families' perceptions and emotions regarding medical conditions in discharge letters for continuous provision of high-quality care.

Rural healthcare professionals' participation in Medical Assistance in Dying (MAiD): beyond a binary decision.

BACKGROUND: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. METHODS: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. RESULTS: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. CONCLUSIONS: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational.

Basic Training in Palliative Medicine for Internal Medicine Residents: Pilot Testing of a Canadian Model in Switzerland.

Background: In Switzerland, palliative care (PC) clinical training is well established at undergraduate and specialist postgraduate levels. However, postgraduate nonspecialist training curricula are less documented. Local Problem: A structured curriculum for nonspecialist rotation within internal medicine (IM) in specialized PC wards is lacking. Objective: To pilot two versions of a PC nonspecialist curriculum for IM residents in Swiss PC units. Methods: In the pilot phase, two curricula-short immersion (3-10 weeks, based on the University of Toronto's Internal-Medicine PC Rotation) and standard nonspecialist (11-18 weeks, based on the Canadian Society of Palliative Care Physician Competencies)-were assessed using a mixed-method online survey. One university and two nonuniversity sites participated. The analysis was descriptive. Results: Five residents and eight supervisors of five training rotations (July-October 2023) responded. Overall, curriculum quality and feasibility (content and time) received positive ratings across all groups, with high satisfaction concerning organization, educational design, learning support, climate, experience, and facilities. Nonuniversity sites were generally rated more positively than university sites. Qualitative feedback paralleled these findings, highlighting the curriculum's relevance and fit with learners' needs and suggesting potential simplifications and more personalized planning. Conclusions: Establishing short and standard duration curricula for a PC program is viable and well received by nonspecialist trainees. Future implementation should concentrate on personalized learning objectives and streamlining the content and structure of the competencies. Cooperation within various training settings (university and regional hospitals) as well as on an international level (e.g., Canada-Switzerland) may further improve the quality of the proposed training formats.

Exploring patient perspectives on electronic patient-reported outcome measures in home-based cancer palliative care: A qualitative study.

Background: Electronic patient-reported outcomes (ePROMs) enhance symptom management and patients' engagement in palliative cancer care. However, integrating them into this setting brings challenges, including patients' familiarity with technological devices and declining health status. Prioritizing the patient's acceptability and feasibility is crucial for their adoption. However, more knowledge is needed about patients' perspectives on the adoption of ePROMs in the community, especially for home-based palliative care. Aim: Explore patient viewpoints on utilizing ePROMs for symptom reporting in home-based oncology palliative care. Design: A qualitative interpretative approach was used to evaluate patients' points of view on using ePROMs in this specific care setting. Semistructured interviews were carried out. Data were analyzed using a reflexive thematic analysis. Setting/participants: A total of 25 patients receiving oncological home palliative care from the advanced palliative care unit of the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan, Italy, were invited to participate. Twenty interviews were conducted, as five patients declined due to deteriorating health. Results: Four themes were identified: (1) strategic value of ePROMs and subjective appreciation; (2) enhancing patient centeredness through ePROMs; (3) exploring and addressing concerns about the use of ePROMs and (4) intersecting factors influencing the efficacy of ePROMs. Conclusion: Despite initial reticence, home palliative care patients consider ePROMs as potentially valuable allies monitoring symptoms, enhancing their quality of life, and amplifying their voices on less explored aspects of care. Continuous dialog between healthcare professionals and patients is crucial for addressing patient skepticism about ePROMs and their impact on the human aspect of care.

The clinical effect of an electric massage chair on chemotherapy-induced nausea and vomiting in cancer patients: randomized phase II cross-over trial.

PURPOSE: Chemotherapy-induced nausea and vomiting (CINV) is a common adverse events in cancer patients and can negatively affect their quality of life (QoL). This study aimed to evaluate the clinical efficacy of an electric massage chair (EMC) for the treatment of CINV. METHODS: A randomized phase II cross-over trial was conducted on solid cancer patients who received moderate (MEC) to high emetogenic chemotherapy (HEC). The participants were randomly assigned to receive their first chemotherapy either on a standard bed (Group A) or in an EMC (Group B) during the infusion. The patients were then crossed over to the next cycle. CINV and QoL questionnaires were collected from the participants. RESULTS: A total of 59 patients completed the trial protocol and were included in the analysis, with 29 and 30 patients in Groups A and B, respectively. The mean INVR (Index of Nausea, Vomiting, and Retching) score in the 2nd day of the first cycle was higher in Group B (3.63 ± 5.35) than Group A (2.76 ± 4.78), but the difference was not statistically significant (p = 0.5367). The complete response rate showed little difference between the groups. Among the high-emetic risk subgroups, patients who received HEC (p = 0.04595), younger patients (p = 0.0108), and non-colorectal cancer patients (p = 0.0495) presented significantly lower CINV scores when EMC was applied. CONCLUSION: Overall, there was no significant difference in INVR scores between standard care and EMC. Applying EMC at the first chemotherapy infusion may help preserve QoL and reduce CINV in high-risk patients. TRIAL REGISTRATION: KCT0008200, 17/02/2023, Retrospectively registered.

End-of-life care in Germany between 2016 and 2020 - A repeated cross-sectional analysis of statutory health insurance data.

BACKGROUND: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. OBJECTIVE: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. METHODS: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016-2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. RESULTS: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p < .001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p < .001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p < .001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p = .041). CONCLUSION: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. TRIAL REGISTRATION: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019).

A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

The epidemiology of dying within 48 hours of presentation to emergency departments: a retrospective cohort study of older people across Australia and New Zealand.

BACKGROUND: Emergency department (ED) clinicians are more frequently providing care, including end-of-life care, to older people. OBJECTIVES: To estimate the need for ED end-of-life care for people aged ≥65 years, describe characteristics of those dying within 48 hours of ED presentation and compare those dying in ED with those dying elsewhere. METHODS: We conducted a retrospective cohort study analysing data from 177 hospitals in Australia and New Zealand. Data on older people presenting to ED from January to December 2018, and those who died within 48 hours of ED presentation, were analysed using simple descriptive statistics and univariate logistic regression. RESULTS: From participating hospitals in Australia or New Zealand, 10,921 deaths in older people occurred. The 48-hour mortality rate was 6.43 per 1,000 ED presentations (95% confidence interval: 6.31-6.56). Just over a quarter (n = 3,067, 28.1%) died in ED. About one-quarter of the cohort (n = 2,887, 26.4%) was triaged into less urgent triage categories. Factors with an increased risk of dying in ED included age 65-74 years, ambulance arrival, most urgent triage categories, principal diagnosis of circulatory system disorder, and not identifying as an Aboriginal or Torres Strait Islander person. Of the 7,677 older people admitted, half (n = 3,836, 50.0%) had an encounter for palliative care prior to, or during, this presentation. CONCLUSIONS: Our findings provide insight into the challenges of recognising the dying older patient and differentiating those appropriate for end-of-life care. We support recommendations for national advanced care planning registers and suggest a review of triage systems with an older person-focused lens.

Sparassis latifolia and exercise training as complementary medicine mitigated the 5-fluorouracil potent side effects in mice with colorectal cancer: bioinformatics approaches, novel monitoring pathological metrics, screening signatures, and innovative management tactic.

BACKGROUND: Prompt identification and assessment of the disease are essential for reducing the death rate associated with colorectal cancer (COL). Identifying specific causal or sensitive components, such as coding RNA (cRNA) and non-coding RNAs (ncRNAs), may greatly aid in the early detection of colorectal cancer. METHODS: For this purpose, we gave natural chemicals obtained from Sparassis latifolia (SLPs) either alone or in conjunction with chemotherapy (5-Fluorouracil to a mouse colorectal tumor model induced by AOM-DSS. The transcription profile of non-coding RNAs (ncRNAs) and their target hub genes was evaluated using qPCR Real-Time, and ELISA techniques. RESULTS: MSX2, MMP7, ITIH4, and COL1A2 were identified as factors in inflammation and oxidative stress, leading to the development of COL. The hub genes listed, upstream regulatory factors such as lncRNA PVT1, NEAT1, KCNQ1OT1, SNHG16, and miR-132-3p have been discovered as biomarkers for prognosis and diagnosis of COL. The SLPs and exercise, effectively decreased the size and quantity of tumors. CONCLUSIONS: This effect may be attributed to the modulation of gene expression levels, including MSX2, MMP7, ITIH4, COL1A2, PVT1, NEAT1, KCNQ1OT1, SNHG16, and miR-132-3p. Ultimately, SLPs and exercise have the capacity to be regarded as complementing and enhancing chemotherapy treatments, owing to their efficacious components.

Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

BACKGROUND: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. AIM: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. DESIGN: We conducted a qualitative study based on focus group discussions. SETTING/PARTICIPANTS: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. RESULTS: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. CONCLUSIONS: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

Perspectives from patients with chronic lung disease on a telehealth-facilitated integrated palliative care model: a qualitative content analysis study.

BACKGROUND: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. METHODS: For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. RESULTS: We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. CONCLUSIONS: These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model.

The Use of Tetrahydrocannabinol Is Associated with an Increase in Survival Time in Palliative Cancer Patients: A Retrospective Multicenter Cohort Study.

Introduction: Tetrahydrocannabinol (THC) is often prescribed for ambulatory palliative patients to improve sleep quality and appetite and to reduce anxiety, stress, and pain. However, it is not known if THC has also an effect on the mortality of these patients. Method: The objective was the impact of THC on mortality of ambulatory palliative patients. For this purpose, data from the palliative treatment documentation from 5 ambulatory palliative care teams in Brandenburg, Germany were used for this analysis. Survival time was calculated for 3 groups of patients: (1) without THC; (2) with THC in a low dosage (≤4.7 mg per day); and (3) THC in higher doses (≥4.7 mg per day). The analysis was done for 2 cohorts of patients. Cohort 1: all patients with a survival time of at least 7 days after inclusion in specialized ambulatory palliative care (SAPC) and cohort 2: a subgroup of patients with a survival time between 7 and 100 days. Kaplan-Meier curves were created, and multivariate analysis was done to investigate the impact of THC on mortality. Results: A total of 9,419 patients with a survival time of at least 7 days after inclusion in SAPC were included in the analysis (cohort 1). 7,085 among them had a survival time between 7 and 100 days (cohort 2). In both cohorts, survival time was significantly prolonged by THC, but only when the daily THC dose was above the median of 4.7 mg. Survival time was 15 days longer in cohort 2 (40 vs. 25 days), when more than 4.7 mg THC were prescribed per day. Conclusion: Use of THC is associated with a significant increase in survival time in ambulatory palliative patients which survive longer than 7 days the initiation of THC prescription and which use of THC >4.7 mg/day.

Missed Opportunity to Diagnose Palliative Care Need Among Older Emergency Department Patients in a Middle-Income Country: A Retrospective Study.

Purpose: This study aimed to determine the percentage of missed opportunities (MOs) to identify and treat older adults presenting with palliative care (PC) needs at one emergency department (ED). The secondary objective was to determine the rate of treatment interventions regardless of whether the patients received a PC plan as well as the direct cost of treatment. Patients and Methods: In this retrospective study, PC need was determined using broad and narrow criteria. The subjects comprised patients aged 65 or older who had out-of-hospital cardiac arrest and/or died in the ED (Group 1) or within 72 hours after ED disposition (Group 2) over a 3-year period (2016-2018). Overall, 17,414 older adults visited the ED, 60 died in the ED, and 400 died within 72 hours after ED disposition and admitted to in-hospital ward. In total, 200 patients were randomly selected; of these, 15 were excluded. Results: Of the remaining 185 patients enrolled, 161/185 (87%) met the PC criteria and 60/161 (37.3%) were missed opportunities for PC planning. Group 1, had thirty patients, and 8 of those 30 (27%) were missed opportunities for PC planning. Group 2, 131/161 (81.4%), died within 72 hours, and there were 52 missed opportunities (39.7%) of ED PC planning. By comorbidity (Group 2), providers considered PC planning most often for cancer patients (PC: 41.8%; missed opportunities: 15.4%; p = 0.001) and there were more missed opportunities for PC planning among those with ischemic heart disease (PC: 19.0%; missed opportunities: 36.5%; p = 0.025). Conclusion: Of the older adults who visited the ED, 87% merited palliative care; further, 37% of opportunities for PC planning were missed. Providers considered PC planning most often for cancer patients. Recognizing PC needs and initiating care in the ED can improve end-of-life quality for dying patients.

The palliative care needs and experiences of patients with advanced Parkinson's disease: a qualitative scoping review.

Aim: To determine the experiences and needs of palliative care in patients with advanced Parkinson's disease (PD). Methods: A scoping literature review methodology, as described by the Joanna Briggs Institute, was employed to search for relevant literature. An electronic search of studies published in English was conducted across five databases from inception to 10 September 2023. Results: The search yielded a total of 1,205 articles, with 20 meeting the inclusion criteria. The findings were organized into four themes: (1) unmet emotional and informational needs; (2) needs for effective coordination of care; (3) planning for the future; and (4) symptom management. This scoping review highlights the intricate nature of palliative care for patients with PD and sheds light on issues within current palliative care healthcare systems. The findings emphasize the necessity for individualized interventions and services to address the diverse unmet palliative care needs of people with PD. Conclusion: The study reveals the complex landscape of palliative care for individuals with advanced PD, emphasizing the inadequacies within existing healthcare systems. The identified themes underscore the importance of tailored interventions to address the varied unmet palliative care needs of this population.

Cancer patients have a reduced likelihood of dying in hospital with advance care planning in primary health care and a summarizing palliative plan: a prospective controlled non-randomized intervention trial.

BACKGROUND: Advance care planning (ACP) allows patients to define their goals and preferences. Spending more time at home and less time in the hospital, along with avoiding death in the hospital, are often considered desirable outcomes of palliative care (PC). In 2015, 36% of cancer patients died in the hospital and 13% died at home in Norway. METHOD: From 2015 to 2022, this prospective controlled non-randomized intervention trial observed 144 cancer patients with or without an organized ACP conversation in primary health care and a summarizing palliative plan (ClinicalTrials.gov Identifier: NCT02170168, 23 June 2014). The patients were identified through contact with the local cancer outpatient clinic or hospital-based PC team. RESULTS: A total of 128 patients died during the observation period. Of these, 67 patients had an organized ACP conversation and summarizing palliative plan (intervention (I) group) and 61 had not (control (C) group). Dying in the hospital was significantly less common for patients in the I group compared to the C group (17.9% vs. 34.4%; X2 (1, n = 128) = 4.55, p = 0.033). There were no differences between the groups in terms of where they spent their time in the last 90 days of life (home, nursing home, or hospital). Most patients (62%) preferred to die at home. The observed differences between the groups regarding preferred and actual places of death did not reach statistical significance. CONCLUSION: With organized ACP conversations in primary health care and a summarizing palliative plan, cancer patients died less often in the hospital in our observational study. A structured ACP approach integrating palliative care for cancer patients into primary health care can support patients´ preferences at the end of life.

Prevalence and impact of endocrine disorders in advanced metastatic cancer patients undergoing cancer-directed therapy: A prospective observational study.

BACKGROUND: Noncommunicable diseases (NCDs) contribute significantly to global morbidity and mortality, with cancer being one of the leading causes. In this prospective observational study, we aimed to investigate the prevalence and impact of endocrine disorders, specifically diabetes and thyroid dysfunction, in patients with advanced metastatic cancer undergoing cancer-directed therapy. METHODS: Over 15 months, we recruited 100 histologically proven advanced metastatic cancer patients from the Department of Medical Oncology Haematology, All India Institute of Medical Sciences, Rishikesh, and conducted institutional-based prospective observational study. All participants over 18 years of age, treatment-naive, and potential candidates for systemic chemotherapy with an expected clinical survival of at least 6 months were included in the study. Patients with prior therapy, secondary neoplasms, and those unable to complete 3 months of palliative chemotherapy were excluded. Patients were assessed for diabetes and thyroid function at presentation, after 3 and 6 months of cancer-directed standard therapy. These data were analyzed, processed, and presented as results. RESULTS: The mean age of participants was 50.45 years, with a near-equal distribution of males and females. At baseline, 10% of the study population had preexisting endocrine disorders (2% hypothyroidism, 8% diabetes). By the end of 6 months, the prevalence increased to 18%, with females being more affected. Notably, the prevalence of new-onset endocrine disorders during cancer-directed therapy was only 3% for diabetes and 4% for thyroid dysfunction. CONCLUSION: Analysis of sociodemographic and cancer-related characteristics showed no significant association with changes in diabetic and thyroid status at 3 and 6 months. However, substance use, particularly smoking, was associated with an increased risk of diabetes development (p < .05). Cancer type and treatment regimen did not show statistically significant correlations with endocrine dysfunction. IMPLICATIONS: Our study highlights the importance of considering endocrine disorders in advanced metastatic cancer patients undergoing therapy. The prevalence of diabetes and thyroid dysfunction increased during cancer-directed therapy, particularly in females. Careful monitoring and timely intervention are essential to improve the quality of life for these patients. Further research is warranted to explore the long-term effects of cancer-directed therapy on endocrine health and develop tailored management strategies for this vulnerable population.