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.

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.

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.

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.

"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.

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.

'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.

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.

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.

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.

Methadone as an adjuvant analgesic.

Methadone as an 'adjuvant' has proven to be effective and safe to be used in conjunction with opioids. Generally, only a low dose is required to improve pain control.

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

BACKGROUND:  The COVID-19 Pandemic had profound effects on healthcare systems around the world. In South Africa, field hospitals, such as the Mitchell's Plain Field Hospital, managed many COVID patients and deaths, largely without family presence. Communicating with families, preparing them for death and breaking bad news was a challenge for all staff. AIM:  This study explores the experiences of healthcare professionals working in a COVID-19 field hospital, specifically around having to break the news of death remotely. SETTING:  A150-bed Mitchells Plain Field Hospital (MPFH) in Cape Town. METHODS:  A qualitative exploratory design was utilised using a semi-structured interview guide. RESULTS:  Four themes were identified: teamwork, breaking the news of death, communication and lessons learnt. The thread linking the themes was the importance of teamwork, the unpredictability of disease progression in breaking bad news and barriers to effective communication. Key lessons learnt included effective management and leadership. Many families had no access to digital technology and linguo-cultural barriers existed. CONCLUSION:  We found that in the Mitchell's Plain Field Hospital, communication challenges were exacerbated by the unpredictability of the illness and the impact of restrictions on families visiting in preparing them for bad news. We identified a need for training using different modalities, the importance of a multidisciplinary team approach and for palliative care guidelines to inform practice.Contribution: Breaking the news of death to the family is never easy for healthcare workers. This article unpacks some of the experiences in dealing with an extraordinary number of deaths by a newly formed team in the COVID era.

Outcomes of care during the last month of life: a systematic review to inform the development of a core outcome set.

BACKGROUND: To date, there is a lack of standardization and consensus on which outcomes are central to assess the care provided to patients in the last month of life. Therefore, we aimed to conduct a systematic review to identify relevant outcomes to inform the development of a core outcome set for the best care for the dying person. METHODS: We conducted a systematic review of outcomes reported in the scientific literature about the care for the dying person in the last month of life. We searched for peer-reviewed studies published before February 2022 in four electronic databases. To categorise the outcomes, we employed the taxonomy developed by the "Core Outcome Measures in Effectiveness Trials" collaboration. RESULTS: Out of the 2,933 articles retrieved, 619 were included for analyses. The majority of studies (71%) were retrospective and with data extracted from chart reviews (71%) . We extracted 1,951 outcomes in total, from which, after deletion of repeated outcomes, we identified 256 unique ones. The most frequently assessed outcomes were those related to medication or therapeutic interventions and those to hospital/ healthcare use. Outcomes related to psychosocial wellbeing were rarely assessed. The closer to death, the less frequently the outcomes were studied. CONCLUSIONS: Most outcomes were related to medical interventions or to hospital use. Only a few studies focused on other components of integrated care such as psychosocial aspects. It remains to be defined which of these outcomes are fundamental to achieve the best care for the dying.

Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit.

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

Validity and Reliability of the Palliative Care Knowledge Scale.

Tools to measure layout people's knowledge about palliative care are very limited. This study aimed to examine the validity and reliability of the Palliative Care Knowledge Scale (PaCKS) in Turkish on layout people other than healthcare professionals. Perception of Health Scale (PHS) and European Health Literacy Survey (EHLS) scales were used to ensure concurrent validity of PaCKS. Cronbach's alpha value of the scale was found to be .846. In item analysis, item-total score correlations were found to be between .343 and .691. Intraclass correlation coefficient of PaCKS total score was found to be .862, p < .001 in test-retest results. In the concurrent validity analysis, there was a statistically significant positive correlation between the PaCKS and the PHS (r = .504, p = .000) and PaCKS and the EHLS (r = .251, p = .017). PaCKS is a simple, applicable and short test that can be easily understood by layout people without any health education.

Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

BACKGROUND: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. AIM: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. SETTING/PARTICIPANTS: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. RESULTS: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. CONCLUSION: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

Enhanced supportive care in cancer centres: national cross-sectional survey.

OBJECTIVES: 'Early' specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. 'Enhanced supportive care' (ESC) aims to facilitate earlier integrated supportive care for those with incurable cancer. This study aimed to explore clinicians' understanding of ESC/SPC delivery through description of current service provision. METHODS: This national cross-sectional survey of 53 cancer centres had two parts. Part 1: Service details, was directed to lead ESC/SPC nurses or consultants about service configuration, and Part 2: Clinician understanding, targeting conceptual understanding of service aims including ESC/SPC teams and oncology consultants (n=262 surveys). Multiple-choice questions explored service provision, referral triggers and evidence of integration with oncology, with free-text responses. Quantitative results were analysed with Fischer's exact test. Qualitative free text was line-by-line coded by two authors independently to derive themes. RESULTS: 56% (30/53) of SPC and ESC teams and 14% (14/100) of oncologists responded. Those involved in ESC self-reported greater integration with oncology compared with non-ESC teams, for example, joint case discussions (64.3%, 9/14 vs 23.1%, 3/13, p=0.05), and timelier patient referral ((>6 months before death vs <6 months) (10/14 vs 4/13, p=0.06)). Qualitative themes described ambiguity in definitions of supportive and palliative terms and a perception of timelier identification of patients when ESC was involved. CONCLUSION: Providers of ESC perceive greater integration with oncology and potentially timelier referral for patients compared with teams not delivering ESC. Terminology around SPC and ESC remains uncertain across England.

Factors affecting nurses' attitude toward withdrawal of life-sustaining treatment for children.

PURPOSE: The purpose of study was to investigate factors affecting nurses' attitudes toward withdrawal of life-sustaining treatment in children. DESIGN AND METHODS: This descriptive survey study included 167 nurses working at children's hospitals or children's wards. Data were collected through a structured self-administered survey in November 2022. Data were analyzed using descriptive analysis, t-test, ANOVA, the Dunnett's T3 test, Pearson's correlation coefficient, and multiple linear regression. RESULTS: Attitude toward withdrawal of life-sustaining treatment in children showed a significant positive correlation with knowledge of life-sustaining treatment decision-making (r = 0.38, p < .001) and meaning as a subcategory of moral sensitivity (r = 0.21, p 0.008). The factors affecting attitude toward withdrawal of life-sustaining treatment in children were knowledge of life-sustaining treatment decision-making (ß =0.31, p < .001) and meaning (ß = 0.18, p = .015). This model showed a 21.0% explanation of attitude toward withdrawal of life-sustaining treatment in children. CONCLUSIONS: Developing an effective educational program designed to improve nurses' knowledge and attitude toward life-sustaining treatment decision-making is necessary. PRACTICE IMPLICATIONS: It may have a positive influence on attitudes toward withdrawal of life-sustaining treatment in children by improving child nurses' knowledge about life-sustaining treatment decision-making and moral sensitivity.

Factors that Influence Attitudes toward Advance Directives among Hemodialysis Patients.

Purpose: Advance directives (ADs) are legal documents that outline a person's preferences or decisions regarding end-of-life care ahead of time. In Korea, there is insufficient awareness and knowledge about ADs among patients undergoing hemodialysis. This study explored the relationship between perceptions of a good death, knowledge about ADs, and attitudes toward ADs in this patient population. Methods: This cross-sectional survey enrolled 119 hemodialysis patients from a secondary hospital in 2021. The participants completed a self-administered questionnaire, and the data were analyzed using the t-test, analysis of variance, Pearson correlation coefficients, Spearman rank correlation coefficients, and multiple regression analysis. Results: The average score for perceptions of a good death among hemodialysis patients was 2.80 out of 4, with clinical symptoms identified as the most critical factor. The average scores for knowledge about ADs and attitudes toward ADs were 5.69 out of 9 and 2.79 out of 4, respectively. There was a positive correlation between perceptions of a good death and attitudes toward ADs (r=0.34, P<0.001), as well as between knowledge about Ads and attitudes toward ADs (r=0.19, P=0.037). Factors influencing attitudes toward Ads included employment status (ß=0.22, P=0.011), education level (ß=0.22, P=0.013), and perceptions of a good death (ß=0.29, P=0.001), which accounted for 24.8% of the variance in attitudes toward ADs. Conclusion: A positive perception of a good death among patients undergoing hemodialysis was associated with a positive attitude toward ADs. Educational programs are needed to improve individuals' understanding of a good death and encourage the development of end-of-life care plans.