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.

Consensus-based recommendations for the development and expansion of palliative day care clinics in Germany: results of a Delphi study.

BACKGROUND: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. METHODS: Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. RESULTS: A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants' comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. CONCLUSIONS: The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. TRIAL REGISTRATION: The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).

A multiphase study protocol of identifying, and predicting cancer-related symptom clusters: applying a mixed-method design and machine learning algorithms.

Objectives: In recent years, there has been increasing attention on the cluster approach to symptom management. Two significant challenges in the symptom cluster (SC) approach are identifying and predicting these clusters. This multiphase protocol aims to identify SCs in patients with advanced cancer as the primary objective, with the secondary objective of developing machine learning algorithms to predict SCs identified in the first phase. Methods: The 2-MIXIP study consists of two main phases. The first phase involves identifying SCs, and the second phase focuses on developing predictive algorithms for the identified SCs. The identification of SCs involves a parallel mixed-method design (quantitative and qualitative). Quantitative and qualitative methods are conducted simultaneously and given equal importance. The data are collected and analyzed independently before being integrated. The quantitative part is conducted using a descriptive-analytical method. The qualitative analysis is conducted using a content analysis approach. Then, the identified SCs from both parts are integrated to determine the final clusters and use them in the second phase. In the second phase, we employ a tree-based machine learning method to create predictive algorithms for SCs using key demographic and clinical patient characteristics. Conclusion: The findings of the 2-MIXIP study can help manage cancer patients' symptoms more effectively and enhance clinical decision-making by using SCs prediction. Furthermore, the results of this study can provide guidance for clinical trials aimed at managing symptoms.

Expectant Management of a Triploid Partial Molar Pregnancy at 26 Weeks' Gestation: A Case Report.

Introduction Triploid partial molar pregnancies are not viable, and confer maternal risks including preeclampsia, hemorrhage, gestational trophoblastic neoplasia, and trophoblastic embolization. We report a case managed expectantly until 26 weeks' gestation in a patient requesting continuation of pregnancy. Case Presentation This G2P1 presented with fetal anomalies indicative of triploid partial molar pregnancy. The pregnancy was complicated by anemia, hyperthyroidism, supraventricular tachycardia, and threatened preterm labor. Her care involved maternal fetal medicine collaborating with internal medicine, palliative care, anesthesia and critical care. Labor was augmented at 26 weeks' gestation, resulting in vaginal delivery. Postpartum course was notably complicated by acute respiratory distress in the immediate postpartum period, which self-resolved. Postpartum hemorrhage and retained products of conception were additional complications. Conclusion This unique case highlights the role of multidisciplinary collaboration and shared decision making in challenging circumstances.

Inpatient Palliative Care and Healthcare Utilization Among Older Patients With Alzheimer's Disease and Related Dementia (ADRD) and High Risk of Mortality in U.S. Hospitals.

Background. Despite the potential of palliative care (PC) to enhance the quality of life for patients with advanced dementia, there is limited knowledge of its inpatient utilization patterns. This study investigated inpatient PC consultation utilization patterns and evaluated its impact on hospital length of stay (LOS) and medical costs among older patients diagnosed with Alzheimer's Disease and Related Dementia who were at a high risk of mortality (ADRD-HRM). Methods. Using the 2016-2019 National Inpatient Sample database, we conducted multivariable logistic regression analyses to identify individual and hospital characteristics influencing PC consultation utilization. We subsequently performed generalized linear models to estimate LOS (using Poisson distribution) and hospital charges (via log-transformation). Results. Our sample encompassed 965,644 hospital discharges (weighted n = 4,828,219) of patients aged 65 years and above with ADRD-HRM. Among them, 14.6% received inpatient PC. There was a notable uptrend in PC consultation utilization from 13.3% in 2016 to 16.3% in 2019 (p trend<.001). Factors positively influencing and associated with PC utilization included patients that are older, non-Hispanic White, with higher income, receiving care from teaching hospitals, and facilitated with greater bed capacity (all P < .05). Although patients who received PC were more likely to have 3.0% longer LOS (P < .001), they had 19.2% lower hospital charges (P < .001). Conclusions. PC substantially reduced hospital expenditures for older patients with ADRD-HRM, but the prevalence remained low at 14.6% in the study period. Future studies should explore the unmet needs of patients with lower sociodemographic status and those in rural hospitals to further increase their PC consultation utilization.

Association between physician age and patterns of end-of-life care among older Americans.

BACKGROUND: End-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age. METHODS: We conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (<40, 40-49, 50-59, or ≥60) in two areas: (1) advance care planning (ACP) and palliative care; and (2) high-intensity care at the EOL. RESULTS: Beneficiaries attributed to younger physicians had slightly higher proportions of billed ACP (adjusted proportions, 17.1%, 16.1%, 15.5%, and 14.0% for physicians aged <40, 40-49, 50-59, and ≥60, respectively; p-for-trend adjusted for multiple comparisons <0.001) and palliative care counseling or hospice use in the last 180 days of life (64.5%, 63.6%, 61.9%, and 60.8%; p-for-trend <0.001). Similarly, physicians' younger age was associated with slightly lower proportions of emergency department visits (57.4%, 57.0%, 57.4%, and 58.1%; p-for-trend <0.001), hospital admissions (51.2%, 51.1%, 51.4%, and 52.1%; p-for-trend <0.001), intensive care unit admissions (27.8%, 27.9%, 28.2%, and 28.3%; p-for-trend = 0.03), or mechanical ventilation or cardiopulmonary resuscitation (14.2, 14.9%, 15.2%, and 15.3%; p-for-trend <0.001) in the last 30 days of life, and in-hospital death (20.2%, 20.6%, 21.3%, and 21.5%; p-for-trend <0.001). CONCLUSIONS: We found that differences in patterns of EOL care between beneficiaries cared for by younger and older physicians were small, and thus, not clinically meaningful. Future research is warranted to understand the factors that can influence patterns of EOL care provided by physicians, including initial and continuing medical education.

Top Ten Tips Palliative Care Clinicians Should Know About the Physical Manifestations of Psychiatric Illness and Treatment.

Addressing the psychiatric aspects of serious illness in palliative care (PC) is crucial to both care delivery and outcomes. Psychiatric comorbidities are common among patients with PC needs and can significantly impact their total burden of symptomatic distress, overall quality of life, functional independence, and healthcare utilization. Yet, these aspects of care are often deferred to mental health consultant teams in the context of busy PC services and often limited human resources. To provide comprehensive and person-centered care, PC clinicians must understand the interplay between medical conditions and psychiatric presentations within a biopsychosocial framework to respond empathically, efficiently, and effectively. This article is the first of a two-part series developed in collaboration with a group of psychiatric-palliative care specialists. This article explores ten common physical manifestations of psychiatric illness and treatment among patients facing serious illnesses. The second article will provide pragmatic tips PC clinicians should know about the psychiatric manifestations of nonpsychiatric serious illness and treatment. Combined, these two articles support a holistic approach that PC clinicians can use to prioritize and integrate both mental and emotional well-being throughout the continuum of serious illness.

Frequency of Myoclonus and its Countermeasures in Terminally Ill Patients with Cancer: A Single-Center Retrospective Study.

Myoclonus is a relatively rare involuntary movement that is often observed in palliative care settings and that can cause patient distress. The purpose of this study is to investigate the occurrence of myoclonus and countermeasures against it in terminally ill patients with cancer diagnosed by palliative care specialists at Komaki City Hospital, Japan. We retrospectively reviewed patients with terminal cancer who received palliative care consultations between January 2018 and May 2019 and who were diagnosed with myoclonus by palliative care specialists, using electronic medical records. Patient demographics, time from onset of myoclonus to death, daily opioid use, countermeasures, and outcome of myoclonus were assessed. Of 360 patients examined during this period, 45 (12.5%) were diagnosed with myoclonus. Median age was 71 (range, 43-88) years; median time from onset of myoclonus to death was 8 days (range, 0-56); opioid usage was present in 39 patients (morphine, oxycodone, and fentanyl: n = 6, 21, and 12, respectively); and median oral morphine equivalent at onset of myoclonus was 60 mg (range, 12-336 mg). Myoclonus treatment was administered to 21 patients (opioid dose reduction, opioid switching, and others: n = 14, 3, and 4, respectively). Myoclonus is a common complication in patients with terminal cancer.

Retrospective Analysis of the Integration of Palliative Care Into the Care of Stroke Patients Admitted to a Regional Stroke Center.

Background: Palliative care (PC) aims to enhance the quality of life for patients when confronted with serious illness. As stroke inflicts high morbidity and mortality, the integration of PC within acute stroke care remains an important aspect of quality inpatient care. However, there is a tendency to offer PC to stroke patients only when death appears imminent. We aim to understand why this may be by examining stroke patients admitted to a regional stroke centre who subsequently died and their provision of PC. Methods: We conducted a retrospective single-centre cohort study of patients who died during admission to the regional stroke centre at Sunnybrook Health Sciences Centre (SHSC) in Toronto, Ontario, Canada. Baseline demographics were assessed using means, standard deviations (SD), medians, interquartile ranges (IQR), and proportions. Descriptive statistics, univariate, and multivariate analyses were performed to ascertain relationships between collected variables. Results: Univariate modeling demonstrated that older age, being female, no stroke diagnosis at admission to hospital, ischemic stroke, and comorbidities of cancer or dementia were associated with a higher incidence of palliative medicine consultation (PMC), while admission from an acute care hospital and a Glasgow Coma Scale (GCS) coma classification were associated with a lower incidence of PMC. The multivariate model identified the GCS coma-related category as the only significant factor associated with a higher incidence of death but was non-significantly related to a lower incidence of PMC. Conclusion: These results highlight continued missed opportunities for PC in stroke patients and underscore the need to better optimize PMC.

Impact of Implementing Serious Illness Conversations Across a Comprehensive Cancer Center Using an Interdisciplinary Approach.

BACKGROUND: Gaps in communication of end-of-life care preferences increase risk of patient harm. Adoption of oncology practice guidelines advocating serious illness communication for patients with advanced cancer is limited. OBJECTIVES: (1) Increase Serious Illness Conversation (SIC) use across oncology teams via an interdisciplinary quality improvement (QI) approach and (2) assess patient reported shared decision making (SDM) experiences with clinicians engaged in SIC implementation. DESIGN: QI methodology was applied to spread the implementation of SIC across 4 oncology teams. CollaboRATE scores were used to evaluate patient reported outcomes of SDM for patients with advanced cancer. SETTINGS/SUBJECTS: The SIC QI initiative was a component of the Promise Partnership Learning Health System (PPLHS) piloted in the Dartmouth Cancer Center, Lebanon, NH, USA. MEASUREMENTS: (1) The percentage of eligible patients with documented SIC and (2) a comparison of a patient reported measure of SDM (CollaboRATE) among SIC eligible patients in encounters with providers who took part in the implementation versus those who did not. RESULTS: Oncology teams screened a total of 538 patients, identified 278 eligible patients, and completed 144 SIC conversations. The teams improved the proportion of documented SIC among eligible patients from near 0% to a collective frequency of 52%. For clinicians' top-box CollaboRATE scores, a chi-squared test demonstrated a statistically significant association between providers implementing SIC into practice and patient reported shared decision making (.16, p = .031). CONCLUSIONS: This approach allows for tailoring of iterative improvement cycles to mitigate barriers and improve the practice of SIC among oncology teams.

Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

Differences in Inpatient Management of Cancer-Related Pain Among Patients with Opioid Use Disorder.

The management of cancer-related pain in patients with opioid use disorder (OUD) remains complex and often challenging for clinicians and patients. There is currently a paucity of data to guide best practices, and the evidence that exists is variably applied. In this hospital-based questionnaire, we sought to understand the variation in practice patterns among clinicians in palliative medicine, addiction medicine, and hospital medicine, in caring for this complex patient population. Sixty-two questionnaire responses were analyzed and variation was found in management of pain, as well as initiation or titration of buprenorphine and methadone. There was also a significant difference in postdischarge subspecialty follow-up. Furthermore, the findings suggest that buprenorphine and methadone may be underutilized in this population. Patients and clinicians may benefit from additional support and standardization of practices to best manage coexisting cancer-related pain and OUD.

Top Ten Tips Palliative Care Clinicians Should Know About the Psychiatric Manifestations of Nonpsychiatric Serious Illness and Treatments.

Mental health issues are widespread and significant among individuals with serious illness. Among patients receiving palliative care (PC), psychiatric comorbidities are common and impact patient quality of life. Despite their prevalence, PC clinicians face challenges in effectively addressing the intricate relationship between medical and psychiatric disorders due to their complex, intertwined and bidirectionally influential nature. This article, created collaboratively with a team of psychiatric-palliative care experts, is the second in a two-part series examining the bidirectional relationship between medical and psychiatric illness in PC. This article explores 10 prevalent psychiatric manifestations associated with severe illness and its treatment. Building upon the first article, which focused on 10 common physical manifestations of psychiatric illness among patients receiving PC, these two articles advocate for an integrated approach to PC that prioritizes mental and emotional wellbeing across the continuum of serious illness.

Incorporating advance care planning in dementia care.

Recent policy focus in dementia care has been on living well with the condition; however, being able to die well with dementia is of equal importance. Advance care planning (ACP) enables people to consider, express and record their wishes and preferences for palliative and end of life care, however there is a low uptake of ACP in people with dementia. Although ACP discussions should be initiated as soon as possible after a diagnosis of dementia, there are other opportunities and transition points in the person's care during which health and social care professionals could promote, engage in and support ACP discussions. This article considers the importance of ACP in dementia care and uses a case study to explore opportunities for initiating and engaging in ACP with people with dementia.

Implementation Barriers and Recommendations for a Multisite Community Health Worker Intervention in Palliative Care for African American Oncology Patients: A Qualitative Study.

Background: Palliative care remains underutilized by African American patients with advanced cancer. Community health workers (CHWs) may help improve palliative care outcomes among this patient population. Objectives: To explore barriers to success of a proposed CHW intervention and synthesize design and implementation recommendations to both optimize our intervention and inform others working to alleviate palliative care disparities. Design: Semi-structured qualitative interviews. Setting/Subjects: Key informants were health care professionals across clinical, leadership, and community health fields. Participants were recruited through purposive sampling from Baltimore, Maryland; Birmingham, Alabama; and Salisbury, Maryland. Measurements: Interviewers used an interview guide grounded in established implementation science models. Data were analyzed through a combined abductive/deductive approach by independent coders. A framework methodology was used to facilitate thematic analysis. Results: In total, 25 professionals completed an interview. Key informants discussed multiple barriers, including at the patient level (lack of knowledge), clinician and facility level (decreased workflow efficiency), and health system level (limited funding). Recommendations related to the intervention's design included high quality preintervention CHW training and full integration of CHWs into the care team to "bridge" divides between outpatient, inpatient, and at-home settings. Intervention delivery recommendations included clearly defining care team roles and balancing flexibility and standardization in CHW support approaches. These recommendations were then used to adapt the planned intervention and its implementation process. Conclusions: Clinicians, cancer center leaders, and CHWs identified multilevel potential barriers to the intervention's success but also described recommendations that may mitigate these barriers. Key informant input represents an important step prior to initiating CHW-based interventions.

The Lived Experiences of Palliative Care Professionals in Cultivating Mindfulness: A Phenomenological Study.

Purpose: The aim of this study was to explore the essence of the lived experiences of palliative care professionals in cultivating mindfulness, with a focus on the meaning of mindfulness in their lives and how mindfulness is experienced throughout their process of caring for others. Design: This was a qualitative study using a phenomenological approach. Methods: Eleven palliative care professionals (three physicians, four nurses, three psychologists, and one spiritual care provider) partook in in-depth interviews. Data were collected from the in-depth interviews and analyzed according to the method of Giorgi. Findings: Two major themes emerged from this study. First, the palliative care professionals realized the need for self-care amid emotional burden, including recognizing their feelings of guilt and self-doubt, emotional contagion of grief, reflections of others' fragility on themself, and their self-imposed limitations. Second, they noticed the transformative impact of mindfulness on them, including detecting reconnection with their body, changes in their personal values, self-acceptance, and liberation. Conclusion: Palliative care professionals can cultivate self-acceptance and facilitate entirely new life experiences through the practice of mindfulness. For them, mindfulness is not merely a self-regulation technique but an existential epiphany, offering hope for self-care and empowerment.

Microwave ablation for painful chest wall metastases from gastrointestinal stromal tumor: a case report.

Background: Gastrointestinal stromal tumor (GIST) is the most common mesenchymal tumor of the digestive tract, with the potential to metastasize. Metastases to bone and soft tissue are more frequent in advanced cases, where targeted therapy is the standard treatment. However, around 10-15% of patients develop disease progression despite treatment. Studies have shown the efficacy of ablation in managing bone and soft tissue metastases (1, 2), but there are no reports of ablation for treating GIST bone or soft tissue metastases. Case presentation: In 2022, a 58-year-old man complaining of left back pain was admitted to Sichuan Cancer Hospital. He had undergone radical resection of the primary gastric GIST and vertebral metastases in 2014 and 2018, respectively. In 2019, rib metastases still occurred despite the use of targeted therapy. During the course of radiotherapy, targeted therapy, and immunotherapy, he experienced persistent chest wall pain. In addition, new lesions occurred in the lungs and chest wall in 2022. After a thorough assessment, microwave ablation (MWA) was recommended in response to his demand for immediate pain relief. The large rib metastasis constricted the spleen, so we completed the ablation in two sessions to reduce the risk of complications. He had 17 months of follow-up until September 2023, during which time his discomfort was considerably reduced. Conclusion: For GIST patients with soft tissue and bone metastases, MWA may offer substantial immediate pain alleviation. When other treatment procedures fail to achieve adequate efficacy, it provides an option.

Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.