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.

Erratum: 'I am afraid the news is not good' - Breaking bad news in the time of COVID: Experiences from a field hospital.

No abstract available.

Nurses' experience of end-of-life care for patients with COVID-19: A descriptive phenomenology study.

The mortality rates among critically ill patients with COVID-19 have been high. The national and institutional infection control policies and resource shortages caused by the pandemic led patients to undergo deaths without dignity and inevitably changed intensive care unit (ICU) end-of-life care (EOLC) practices. This study explores ICU nurses' experiences of providing EOLC for patients with COVID-19 who died. Eight nurses participated in a qualitative phenomenological study. Semi-structured interviews were conducted from July to September 2022. Colaizzi's data analysis method was used, and the following four main themes emerged: (i) only companion in the death journey; (ii) helping families prepare for death; (iii) EOLC trapped within a framework; and (iv) EOLC in retrospect. To secure high-quality EOLC in ICU, it is important to promote practical support for nurses and EOLC-related discussions/education. Technical support, such as digital communication technologies, should be reinforced to help patients and their families participate in EOLC.

Use of the supportive and palliative care indicators tool (SPICT™) for end-of-life discussions: a scoping review.

BACKGROUND: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. AIM: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. METHODS: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. RESULTS: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. CONCLUSIONS: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

BACKGROUND: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. AIM: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' DESIGN: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). FINDINGS: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. CONCLUSIONS: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Early palliative care program in idiopathic pulmonary fibrosis patients favors at-home and hospice deaths, reduces unplanned medical visits, and prolongs survival: A pilot study.

BACKGROUND: Idiopathic Pulmonary Fibrosis (IPF) is a lethal disease; most patients die in hospitals because palliative care (PC) is not wildly and early available. We aimed to determine the impact of an early PC program in IPF patients on place of death, emergency department (ED) admission, unplanned medical visits and survival before and after its implementation at our clinic. METHODS: IPF patients from our ILD clinic who died between January 1st, 2018 and December 31th, 2023 were included in the analysis. Primary outcomes were location of death, number of ED access and unplanned medical visits; secondary outcomes was survival from diagnosis. RESULTS: A total of 46 decedents between 2018 and 2023 were analysed: (median age 71,5 ± 5,5 years, 89 % male): 26 died before the implementation of the early PC program and 20 after. Through χ2 test, location of death resulted significantly different in the two groups, showing the capacity of early PC to favor at home or in hospice death (p = 0,02); similarly, the number of unplanned visits was significantly lower (p = 0,03). Finally, survival was significantly lower in patients not receiving the early PC program (p = 0,01). CONCLUSION: The availability of an early PC program since the diagnosis significantly reduced both the death rate in hospital settings, favoring dying in hospice or at home, and the number of unplanned medical visits. Furthermore, IPF patients receiving early PC showed a longer survival than those who did not.

Palliative care inpatients in Switzerland (2012-2021): characteristics, in-hospital mortality and avoidable admissions.

OBJECTIVES: Palliative patients generally prefer to be cared for and die at home. Overly aggressive treatments place additional strain on already burdened patients and healthcare services, contributing to decreased quality of life and increased healthcare costs. This study characterises palliative inpatients, quantifies in-hospital mortality and potentially avoidable hospitalisations. METHODS: We conducted a multicentre retrospective analysis using the national inpatient cohort. The extracted data encompassed all inpatients for palliative care spanning the years 2012-2021. The dataset comprised information on demographics, diagnoses, comorbidities, treatments and clinical outcomes. Content experts reviewed a list of treatments for which no hospitalisation was required. RESULTS: 120 396 hospitalisation records indicated palliative patients. Almost half were women (n=59 297, 49%). Most patients were ≥65 years old. 66% had an oncologic primary diagnosis. The majority were admitted from home (82 443; 69%). The patients stayed a median of 12 days (6-20). All treatments for 25 188 patients (21%) could have been performed at home. In-hospital deaths ended 64 739 stays (54%); of note, 10% (n=6357/64 739) of in-hospital deaths occurred within 24 hours. CONCLUSIONS: In this nationwide study of palliative inpatients, two-thirds were 65 years old and older. Regarding the performed treatments alone, a fifth of these hospitalisations can be considered as avoidable. More than half of the patients died during their hospital stay, and 1 in 10 of those within 24 hours.

Dexmedetomidine in Palliative Care: A Versatile New Weapon Against Delirium and Pain-Systematic Review.

Introduction: At the end of life, the prevalence of delirium and pain is high. Current therapy is not satisfactory. Dexmedetomidine could be useful in the control of delirium and pain but is not approved outside of intensive care setting. Our objectives are to evaluate existing evidence in the literature that assessed the efficacy of dexmedetomidine in pain and delirium control and its safety in palliative care patients outside intensive care units. This systematic review was prospectively registered with PROSPERO and included a risk of bias assessment. Methods: PubMed and SCOPUS were examined for literature published until 2023. Experimental, cohort, cross-sectional, case-control studies, and case series/reports were included if they evaluate the use of dexmedetomidine in delirium and/or pain management in hospitalized palliative care adult patients. Studies were excluded if they were carried out in intensive care units. Results: Of the initial 529 records, 14 were included. Although only two studies were randomized trials, most were small and only one had low risk of bias. In most case reports and in the two retrospective cohort studies, dexmedetomidine appears to be a better option for these symptoms, although differences were not significant in the randomized trials. Discussion: Dexmedetomidine seems to be a promising option for refractory pain and delirium and may contribute to a reduction in opioid administration to control pain. This is the first systematic review of dexmedetomidine in palliative care. Quality evidence is limited, but clinical properties of dexmedetomidine justify the conduction of controlled trials in palliative care.

[Human dignity and autonomy in medicoethical decisions at the end of life]. / Menschenwürde und Autonomie bei medizinethischen Entscheidungen am Lebensende.

Respect of human dignity is an unquestionable part of daily clinical routine as well as of evaluations in medical ethics. Some aspects of human dignity are a subject of transformation in the course of a lifetime. If the ability to form a will is reduced, it might be difficult to satisfy the individual perception of a dignified treatment, which is of particular interest in terminal care. As illustrated by the presented case report, moral problems can arise when the patient's present verbal or non-verbal expressions are opposed to what is documented or what is estimated by dependants to be the individual's will. In clinical decision-making processes, the determination of the will via an advance directive can be overstated, which can go so far that human dignity is reduced to autonomy. A concept of dignity reduced to autonomy misses the point not only of a dignity-centered medical care but also of shared decision-making. In situations at the end of life other aspects, such as authenticity or self-actualization should be considered when respecting the individual's dignity. Medicine should as such not marginalize death but provide a care based on principles that focus on human interaction and respect for a comprehensive concept of dignity.

Malnutrition management and the application of medical nutrition therapy in hospitalized patients at the end of life.

OBJECTIVES: (1) To determine the prevalence of malnutrition risk in hospitalized patients at the end of life (EOL), (2) to evaluate which nutritional interventions are administered in hospitalized end-of-life patients with malnutrition risk and (3) to assess the association of end-of-life care and the administration of medical nutrition therapy in patients with malnutrition risk. DESIGN: Cross-sectional multi-center study SETTING: Hospital PARTICIPANTS: Hospitalized adult patients MEASUREMENTS: Based on the valid and reliable questionnaire of the Nursing Quality Measurement 2.0 (LPZ), the parameters of demographic data, medical diagnoses, end-of-life phase, care dependency, malnutrition risk according to the Malnutrition Universal Screening Tool (MUST) and nutritional interventions conducted in patients at risk of malnutrition were assessed. Descriptive statistics and statistical tests were conducted. Logistic regression models were established to identify odds ratios (OR) and confidence intervals (CI) for the association of end-of-life care and the provision of medical nutrition therapy. This was done separately for oral nutritional supplements (ONS), enteral nutrition and parenteral nutrition as the respective dependent variables. RESULTS: Of all 12,947 participants, 706 (5.5%) were in an end-of-life phase. The prevalence of malnutrition risk in end-of-life patients was 41.1% compared to 24.7% in other patients (p < 0.001). End-of-life patients with malnutrition risk received more nutritional interventions than other patients with malnutrition risk. The regression models showed that being at the end of life (CI 1.30, 2.63; p < 0.001), being treated by a dietitian (OR 6.02; CI 4.86, 7.45; p < 0.001), suffering from dementia (OR 1.85; CI 1.10, 3.12; p = 0.02) or cancer (OR 1.56; CI 1.25, 1.96; p < 0.001) increased the chance of receiving oral nutritional supplements. For receiving parenteral nutrition, being at the end of life (OR 1.68; CI 1.04, 2.71; p = 0.04), being treated by a dietitian (OR 5.80; CI 4.07, 8.25; p < 0.001), surgery within the previous two weeks (OR 1.58; CI 1.09, 2.30; p = 0.02), younger age (OR 0.99; CI 0.98, 1.00; p = 0.04), care dependency (OR 0.97; CI 0.96, 0.98; p < 0.001), suffering from a disease of the digestive system (OR 2.92; CI 2.07, 4.11; p < 0.001) or cancer (OR 2.44; CI 1.71, 3.49; p < 0.001) were independent predictors. Being at the end of life did not influence the application of enteral nutrition. CONCLUSION: This study showed that nutritional interventions are often applied in end-of-life patients admitted to general hospitals. Being at the end of life was positively associated with the application of oral nutritional supplementation and parenteral nutrition. This data does not allow a conclusion about the appropriateness of using medical nutrition therapy in this study sample. Judging the appropriateness of medical nutrition therapy at the end of life is challenging because of the high variability of prognostication as well as the wishes and needs of the specific patients and their relatives that influences the appraisal of adequate interventions. Every decision about nutrition and hydration in end-of-life patients should be a shared decision and be based on advanced care planning principles.

Pharmacological Treatment for Terminal Agitation, Delirium and Anxiety in Frail Older Patients.

CONTEXT: Psychological distress symptoms in the last days of life often contribute to the overall symptom burden in frail older patients. Good symptom management practices are crucial to ensure high-quality end-of-life care in an aging population, though the best pharmacological approach to treat these psychological symptoms has yet to be established. OBJECTIVES: To identify current evidence-based and practice-based knowledge of pharmacological interventions for the treatment of agitation, delirium, and anxiety during the last days of life in frail older patients. METHODS: A systematic, mixed methods review was performed through MEDLINE via PubMed and EMBASE from inception until February 2022 and updated through March 2023. National and international guideline databases and grey literature were searched for additional studies and guidelines. RESULTS: Four quantitative studies, two non-randomized and two descriptive, were identified. No randomized controlled trials met inclusion criteria. No qualitative studies were withheld. The three consensus-based protocols that were found through citation searching and screening of grey literature did not meet the standards for inclusion. Haloperidol is recommended in consensus-based guidelines for delirium and is widely used, but high-quality evidence about its efficacy is missing. Better control of agitation or refractory delirium might be achieved with the addition of a benzodiazepine. There is no evidence available about the treatment of anxiety in the last days of life in frail older patients. CONCLUSIONS: This mixed methods review demonstrates the lack of good quality evidence that is needed to help clinicians with pharmacological treatment decisions when confronted with psychological symptoms in the last days of life in frail older patients. Population aging will only emphasize the need for further research in this specific population.

'How long do you think?' Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study.

BACKGROUND: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. AIM: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. DESIGN: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. SETTING/PARTICIPANTS: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. RESULTS: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. CONCLUSION: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory.

Social media for palliative and end-of-life care research: a systematic review.

BACKGROUND: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach. METHODS: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications. RESULTS: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed. CONCLUSIONS: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.

Knowledge and Public Perception of Palliative Care in Germany.

Background: Literature reviews reveal poor knowledge and awareness of palliative care in the public. Health literacy deficits impact access to palliative care. Objectives: The aim of this manuscript is to explore the public perception of palliative care in Germany. Design: Triangulated qualitative research design: a snowball-spread online survey and a random pedestrian survey. Setting/Subjects: Citizens in Germany. Results: The pedestrian survey (n = 100) revealed 34% of the participants being not familiar with palliative care. The online survey (n = 994) 5.7% of participants reported to not know what palliative care was. The public's perception of palliative care is mainly medicine oriented, referring to inpatient care for the immediately dying; however, further significant misperceptions were scarce. Conclusions: The public perception shows an indistinct picture of palliative care, and some misconceptions about the objectives and areas of responsibility of the subject, meanwhile, palliative care is known to a majority of people. Understanding partly incomplete pictures of patients and relatives may help to react appropriately in staff-patient interactions and improve public relations.

Death rattle: palliative nursing practices Delphi study.

OBJECTIVES: Interventions for patients with death rattle remain under consideration, and their families strongly acknowledge the need for improved care. However, few reports exist concerning specific and comprehensive nursing practices for them. This study aimed to clarify nursing practices for patients with death rattle and their families in hospital wards and examine each practice's importance. METHODS: We used a modified Delphi method with expert nurses with extensive experience in end-of-life care. Participants were recruited using convenience and snowball sampling. First, we developed a list of nursing practices through a literature review and individual interviews. Second, we conducted the Delphi survey. Two rounds of judging were performed. Items were rated on a 9-point Likert scale (1=not important at all to 9=very important). An item was considered 'important' if at least 80% of the participants rated it ≥7. RESULTS: The list comprised 40 items across 8 domains: assessment of death rattle and the distress felt by the patients, oral care, repositioning, adjustment of parenteral hydration, suctioning, administration of alleviating medications, communication with and assessment of family members who witness death rattle, and nurse's attitude towards death rattle and the relevant interventions. Of the 46 recruited experts, 42 participated in both rounds. Participants regarded 37 of the 40 items as important. CONCLUSIONS: This study specifically and comprehensively identified nursing practices for patients with death rattle and their families using a modified Delphi method to support clinical nursing practice and improve the quality of care.

The Involvement of Caregivers in the End-of-life Care of an Older Adult Living in a Long-term Care Home: A Qualitative Case Study with Nurses and Relatives.

BACKGROUND: A key role of nurses working in long-term care homes (LTCHs) is to promote the involvement of care partners in end-of-life (EOL) care. However, studies on the involvement of care partners in EOL care in LTCHs have focused on care planning and decision-making. While care partners can participate in other ways, it's unclear how they are currently involved in EOL care by staff. PURPOSE: We aimed to explore the involvement of care partners in the EOL care of an older adult living in a LTCH. METHODS: A qualitative case study was conducted. Data was collected from a sample of four nurses and three care partners, using sociodemographic questionnaires, individual semi-structured interviews, documents pertaining to the LTCH's philosophy for EOL care, and a field diary. RESULTS: The results of a thematic analysis showed the broad scope of care partners' possible involvement, including contributing to care, obtaining information, and being present. As there was some variation in care partners' desire to be involved, nurses seemed to rely on them to convey their wishes. To promote this involvement, some strategies aimed at health professionals and managers were suggested. CONCLUSIONS: These results can guide improvement in clinical practices and raise awareness on the EOL care experiences of care partners.

"Life-Sustaining Treatment and Advance Care Documentation among Chinese American ICU Decedents".

CONTEXT: Despite being one of the fastest growing ethnic groups in the U.S., there exists a gap in how treatment preferences among Chinese Americans are expressed and enacted upon in inpatient settings. OBJECTIVES: To compare the rates of advance care documentation and life-sustaining treatment between Chinese American and White American ICU decedents. METHODS: In this matched retrospective decedent cohort study, we included four ICUs within a tertiary medical center located in a Chinatown neighborhood. The Chinese American cohort included adult patients during the terminal admission in the ICU with primary language identified as Chinese (Mandarin, Cantonese, Taishanese). The White American cohort was matched according to age, sex, year of death, and admitting diagnosis. RESULTS: We identified 154 decedents in each cohort. Despite similar odds on admission, Chinese American decedents had higher odds of DNR completion (OR 1.82; 95%CI 0.99-3.40) and DNI completion (OR 1.81; 95%CI, 1.07-1.57) during the terminal ICU admission. Although Chinese American decedents had similar odds of intubation (aOR 0.90; 95%CI, 0.55-1.48), a higher proportion signed a DNI after intubation (41% vs 25%). Chinese American decedents also had higher odds of CPR (aOR 2.03; 95%CI, 1.03-41.6) with three Chinese American decedents receiving CPR despite a signed DNR order (12% vs 0%). CONCLUSIONS: During terminal ICU admissions, Chinese American decedents were more likely to complete advance care documentation and to receive CPR than White American decedents. Changes in code status were more common for Chinese Americans after intubation. Further research is needed to understand these differences and identify opportunities for goal-concordant care.

Unveiling nurses' end-of-life care experiences: Moral distress and impacts.

BACKGROUND: Nurses providing care to patients with end-of-life or terminal illnesses often encounter ethically challenging situations leading to moral distress. However, existing quantitative studies have examined moral distress using instruments that address general clinical situations rather than those specific to end-of-life care. Furthermore, qualitative studies have often been limited to participants from a single unit or those experiencing moral distress-induced circumstances. A comprehensive and integrated understanding of the overarching process of moral distress is vital to discern the unique circumstances surrounding end-of-life care and its consequential impacts. RESEARCH OBJECTIVES: To explore the moral distress experiences of nurses who are frequently involved in caring for patients with end-of-life or terminal illnesses and apply it to two existing theories: the model of moral distress and the ecological model. RESEARCH DESIGN: A qualitative descriptive approach was employed. PARTICIPANTS AND RESEARCH CONTEXT: Seven focus group interviews involving 30 nurses were performed. The subsequent transcriptions underwent rigorous content analysis. ETHICAL CONSIDERATIONS: We obtained Institutional Review Board approval from a university. Focus group interviews were conducted with nurses who agreed to participate and signed the consent form. FINDINGS: The moral distress-inducing factors and nurses' perceived impact of moral distress were identified and categorized based on moral distress theories and ecological models. A total of 15 categories and 30 subcategories across the following 4 domains were derived: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors. CONCLUSIONS: End-of-life-specific circumstances induced moral distress among nurses, with both negative and positive impacts identified. Effective organizational and policy support is essential to manage conflicts, form a healthy organizational culture, provide training, and prevent unnecessary expenses due to the negative consequences of moral distress.

Outpatient Palliative Care Program: Impact on Home Death Rate in Brazil.

While the positive impact of early palliative care on the quality of life of cancer patients is well established, there is a noticeable research gap in developing countries. This study sought to determine the impact of an outpatient palliative care (OPC) program on the location of death among patients in Brazil. This was a retrospective study including patients with cancer who died between January 2022 and December 2022 in 32 private cancer centers in Brazil. Data were collected from medical records, encompassing demographics, cancer characteristics, and participation in the OPC program. The study involved 1980 patients, of which 32.3% were in the OPC program. OPC patients were predominantly younger (average age at death of 66.8 vs. 68.0 years old, p = 0.039) and composed of women (59.4% vs. 51.3%, p = 0.019) compared to the no-OPC patients. OPC patients had more home/hospice deaths (19.6% vs. 10.4%, p < 0.001), and participation in the outpatient palliative care program strongly predicted home death (OR: 2.02, 95% CI: 1.54-2.64). Our findings suggest a significant impact of the OPC program on increasing home and hospice deaths among patients with cancer in our sample. These findings emphasize the potential of specialized OPC programs to enhance end-of-life care, particularly in low-resource countries facing challenges related to social and cultural dimensions of care and healthcare access.

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.