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.

Cuestiones bioéticas involucradas en los Cuidados Paliativos: desde la perspectiva de los profesionales de la salud / Bioethical issues involved in Palliative Care: from the perspective of health professionals

Las cuestiones inherentes al final de la vida constituyen un inmenso desafío para los médicos, debido a la falta de educación formal en lo inherente a cuidados paliativos, y a que se entrelazan conceptos médicos, religiosos, legales y bioéticos en su abordaje. El objetivo de este estudio es identificar, desde la perspectiva de los profesionales de la salud, las cuestiones éticas involucradas en el proceso de atención de pacientes incluidos en cuidados paliativos. Para ello se llevó a cabo de una revisión de 10 artículos, en los cuales se observa la carencia de formación bioética y la aplicación inadecuada (o falta) en lo inherente a manejo adecuado de la información y la dificultad en su comunicación, toma de decisiones compartidas, respeto de la autonomía del paciente, verdad médica, limitación de esfuerzos terapéuticos (AU)

End-of-life issues constitute an immense challenge for physicians, due to the lack of formal education regarding palliative care, and the intertwining of medical, religious, legal, and bioethical concepts in their approach. The objective of this study is to identify, from the perspective of health professionals, the ethical issues involved in the care process for patients included in palliative care. For this, a review of 10 articles was carried out, in which the lack of bioethical training and the inadequate application (or lack) is observed in terms of the proper management of information and the difficulty in its communication, decision making shared, respect for patient autonomy, medical truth, limitation of therapeutic efforts (AU)

End-of-life practices: An ethical framework for clinicians.

Most hospitalized patients die following a decision to forgo life-sustaining treatment and/or focus on comfort care. Since "Do not kill" is a general ethical norm, many healthcare professionals (HCPs) are uncertain or troubled by such decisions. We propose an ethical framework to help clinicians to understand better their own ethical perspectives about four end-of-life practices: lethal injections, the withdrawal of life-sustaining therapies, the withholding of life-sustaining therapies, and the injection of sedatives and/or analgesics for comfort care. This framework identifies three broad ethical perspectives that may permit HCPs to examine their own attitudes and intentions. According to moral perspective A (absolutist), it is never morally permissible to be causally involved in the occurrence of death. According to moral perspective B (agential), it may be morally permissible to be causally involved in the occurrence of death, if HCPs do not have the intention to terminate the patient's life and if, among other conditions, they ensure respect for the person. Three of the four end-of-life practices, but not lethal injection, may be morally permitted. According to moral perspective C (consequentialist), all four end-of-life practices may be morally permissible if, among other conditions, respect for persons is ensured, even if one intends to hasten the dying process. This structured ethical framework may help to mitigate moral distress among HCPs by helping them to understand better their own fundamental ethical perspectives, as well as those of their patients and colleagues.

Considerações éticas relacionadas às condutas terapêuticas de pacientes terminais / Ethical considerations related to the therapeutic management of terminally ill patients / Consideraciones éticas relacionadas con la conducta terapéutica de los pacientes terminales

Objetivo: Conhecer as considerações éticas relacionadas às condutas terapêuticas das equipes de saúde frente aos pacientes terminais. Metodologia: Trata-se de um estudo exploratório de natureza qualitativa. Realizado no período de dezembro de 2020, através do acesso ao Banco de Teses e Dissertações da CAPES, considerando que este, coordena o Sistema de Pós-graduação brasileiro. Resultados: Foram identificadas seis classes semânticas, de modo que a mesma formulou a seguinte distribuição de contextos temáticos: Classe 1 Paciente terminal; Classe 2 Condutas médicas; Classe 3 Manejo terapêutico; Classe 4 Protocolos clínicos e aspectos metodológicos dos estudos; Classe 5 Dependências metodológicas e Classe 6 Suporte clínico na terminalidade Dependências metodológicas. Discussão: A morte e a vida tornam-se um impasse enfrentado pelos profissionais de saúde, pois existem fatores decisivos na vida de cada paciente em situação terminal com nenhuma esperança de cura, envolvendo assim questões éticas. Conclusão: Portanto, torna-se necessário que as instâncias de saúde assegurem protocolos, treinamentos e aporte psicológicos para esses profissionais que atuam diretamente com pacientes em situações terminais de vida, para que possa haver uma ressignificação do processo de cuidado com pacientes e segurança na tomada de decisões por parte dos profissionais de saúde, e assim possa preservar a ética.

Objective: To know the ethical considerations related to the therapeutic behavior of health teams towards terminal patients. Methodology: This is an exploratory study of a qualitative nature. Carried out in January 2020, through access to the CAPES Theses and Dissertations Bank, considering that it coordinates the Brazilian Postgraduate System. Results: Six semantic classes were identified, so that it formulated the following distribution of thematic contexts: Class 1 Terminal patient; Class 2 Medical conducts; Class 3 Therapeutic management; Class 4 Clinical protocols and methodological aspects of the studies; Class 5 Methodological dependencies and Class 6 Clinical support in terminality Methodological dependencies. Discusson: Death and life become an impasse faced by health professionals, as decisive there are factors in the life of each patient in a terminal situation with no hope of cure, thus involving ethical issues. Conclusion: Therefore, it is necessary that health institutions ensure protocols, training and psychological support for these professionals who work directly with patients in terminal situations, so that there can be a new meaning for the process of patient care and safety in decision-making by health professionals, and thus can preserve ethics.

Objetivo: Conocer las consideraciones éticas relacionadas con las conductas terapéuticas de los equipos de salud frente a los pacientes terminales. Metodología: Se trata de un estudio exploratorio de carácter cualitativo. Realizado en el período de diciembre de 2020, a través del acceso al Banco de Tesis y Disertaciones de la CAPES, considerando que este, coordina el Sistema de Pós-graduación brasileño. Resultados: Se identificaron seis clases semánticas, por lo que se formuló la siguiente distribución de contextos temáticos: Clase 1 Paciente terminal; Clase 2 Conductas médicas; Clase 3 Manejo terapéutico; Clase 4 Protocolos clínicos y aspectos metodológicos de los estudios; Clase 5 Dependencias metodológicas y Clase 6 Apoyo clínico en la terminalidad Dependencias metodológicas. Discusión: La muerte y la vida se convierten en un impasse al que se enfrentan los profesionales de la salud, porque hay factores decisivos en la vida de cada paciente en situación terminal sin esperanza de curación, lo que implica cuestiones éticas. Conclusión: Por lo tanto, se hace necesario que las instancias de salud garanticen protocolos, capacitación y apoyo psicológico para estos profesionales que trabajan directamente con los pacientes en situaciones de vida terminal, para que pueda haber una resignificación del proceso de atención al paciente y seguridad en la toma de decisiones por parte de los profesionales de la salud, y así poder preservar la ética.

Ethical challenges in palliative sedation of adults: protocol for a systematic review of current clinical practice guidelines.

INTRODUCTION: This study aims to identify the full spectrum of ethical challenges of all forms of palliative sedation for adults as presented in current clinical practice guidelines (CPGs) and to determine whether CPGs specify ethical challenges of this therapy for patients with cancer and non-cancer and, if so, how exactly they do this. To the best of our knowledge, no studies have yet investigated this topic. The purpose is purely descriptive; our aim is not to make any kind of normative judgements on these challenges. Nor is our aim to assess the quality of the CPGs. METHODS AND ANALYSIS: We will perform a systematic review of CPGs on palliative sedation for adults via five electronic databases, grey literature search tools, citation tracking and contact with palliative care experts. Current CPGs accredited by an international, national or regional authority, published in English, German, French, Italian or Polish, from 2000 to the date of the search, will be subjected to content analysis at the textual, linguistic and thematic levels. ETHICS AND DISSEMINATION: This is a protocol for a systematic review and no human will be involved in this research. Therefore, ethics approval and consent to participate are not applicable to this context. This study protocol is reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis for Protocols criteria and registered on PROSPERO. Moreover, the integral version of this study protocol is published as a preprint on Research Square. The results of this study will be actively disseminated through peer-reviewed journals and books, international, national and local conference presentations, social media and media in general.

Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home. METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group. RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort. CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.

Do-not-resuscitate order in COVID-19 times: bioethics and professional ethics.

OBJECTIVE: To reflect about the do-not-resuscitation order at COVID-19 in Brazil, under bioethical focus and medical and nursing professional ethics. METHOD: Reflection study based on the principlist bioethics of Beauchamps and Childress and in professional ethics, problematizing actions, and decisions of non-resuscitation in the pandemic. RESULTS: It is important to consider the patient's clinic, appropriation of treatment goals for people with comorbidities, elderly people, with less chance of surviving to resuscitation, or less quality of life, with the palliative care team, to avoid dysthanasia, use of scarce resources and greater exposure of professionals to contamination. CONCLUSION: COVID-19 increased the vulnerabilities of professionals and patients, impacting professional decisions and conduct more widely than important values ​​such as the restriction of freedom. It propelled the population in general to rethink ethical and bioethical values ​​regarding life and death, interfering in decisions about them, supported by human dignity.

[Ethical stakes in palliative care in radiation oncology]. / Enjeux éthiques de la pratique des soins à visée palliative en oncologie radiothérapique.

In 2021, the Ethics Commission of the SFRO has chosen the issue of the practice of palliative care in radiotherapy oncology. Radiation oncology plays a central role in the care of patients with cancer in palliative phase. But behind the broad name of palliative radiotherapy, we actually find a large variety of situations involving diverse ethical issues. Radiation oncologists have the delicate task to take into account multiple factors throughout a complex decision-making process. While the question of the therapeutic indication and the technical choice allowing it to be implemented remains central, reflection cannot be limited to these decision-making and technical aspects alone. It is also a question of being able to create the conditions for a singularity focused care and to build an authentic care relationship, beyond technicity. It is through this daily ethical work, in close collaboration with patients, and under essential conditions of multidisciplinarity and multiprofessionalism, that our fundamental role as caregiver can be deployed.

Enteral Nutrition by Nasogastric Tube in Adult Patients under Palliative Care: A Systematic Review.

Nutritional management of patients under palliative care can lead to ethical issues, especially when Enteral Nutrition (EN) is prescribed by nasogastric tube (NGT). The aim of this review is to know the current status in the management of EN by NG tube in patients under palliative care, and its effect in their wellbeing and quality of life. The following databases were used: PubMed, Web of Science (WOS), Scopus, Scielo, Embase and Medline. After inclusion and exclusion criteria were applied, as well as different qualities screening, a total of three entries were used, published between 2015 and 2020. In total, 403 articles were identified initially, from which three were selected for this review. The use of NGT caused fewer diarrhea episodes and more restrictions than the group that did not use NG tubes. Furthermore, the use of tubes increased attendances to the emergency department, although there was no contrast between NGT and PEG devices. No statistical difference was found between use of tubes (NGT and PEG) or no use, with respect to the treatment of symptoms, level of comfort, and satisfaction at the end of life. Nevertheless, it improved hospital survival compared with other procedures, and differences were found in hospital stays in relation to the use of other probes or devices. Finally, there are not enough quality studies to provide evidence on improving the health status and quality of life of the use of EN through NGT in patients receiving palliative care. For this reason, decision making in this field must be carried out individually, weighing the benefits and damages that they can cause in the quality of life of the patients.

Impact of self-decision to stop cancer treatment on advanced genitourinary cancer patients.

ABSTRACT: Decision-making to stop cancer treatment in patients with advanced cancer is stressful, and it significantly influences subsequent end-of-life palliative treatment. However, little is known about the extent to which the patient's self-decisions influenced the prognostic period. This study focused on the patient's self-decision and investigated the impact of the self-decision to stop cancer treatment on their post-cancer treatment survival period and place of death.We retrospectively analyzed 167 cases of advanced genitourinary cancer patients (kidney cancer: 42; bladder cancer: 68; prostate cancer: 57) treated at the University of Fukui Hospital (UFH), who later died because of cancer. Of these, 100 patients decided to stop cancer treatment by themselves (self-decision group), while the families of the remaining 67 patients (family's decision group) decided to stop treatment on their behalf because the patient's decision-making ability was already impaired. Differences in the post-cancer-treatment survival period and place of death between the 2 groups were examined. The association between place of death and survival period was also analyzed.The median survival period after terminating cancer treatment was approximately 6 times longer in the self-decision group (145.5 days in self-decision group vs 23.0 days in family's decision group, P < .001). Proportions for places of death were as follows: among the self-decision group, 42.0% of patients died at UFH, 45.0% at other medical institutions, and 13.0% at home; among the family's decision group, 62.7% died at UFH, 32.8% at other medical institutions, and 4.5% at home. The proportion of patients who died at UFH was significantly higher among the family's decision group (P = .011). The median survival period was significantly shorter for patients who died at UFH (UFH: 30.0 days; other institutions/home: 161.0 days; P < .001).Significantly longer post-cancer-treatment survival period and higher home death rate were observed among patients whose cancer treatment was terminated based on their self-decision. Our results provide clinical evidence, especially in terms of prognostic period and place of death that support the importance of discussing bad news, such as stopping cancer treatment with patients.

Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals.

BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently revised national Framework for Practice from the British Association of Perinatal Medicine. METHODS: The online survey requested participants indicate the lowest gestation at which they would be willing to offer active treatment and the highest gestation at which they would withhold active treatment of an EPI at parental request (their lower and upper thresholds). Relative risks were used to compare respondents' views based on profession and neonatal unit designation. Further questions explored respondents' conceptual understanding of viability. RESULTS: 336 respondents included 167 consultants, 127 registrars/fellows and 42 advanced neonatal nurse practitioners (ANNPs). Respondents reported a median grey zone for neonatal resuscitation between 22+1 and 24+0 weeks' gestation. Registrars/fellows were more likely to select a lower threshold at 22+0 weeks compared with consultants (Relative Risk (RR)=1.37 (95% CI 1.07 to 1.74)) and ANNPs (RR=2.68 (95% CI 1.42 to 5.06)). Those working in neonatal intensive care units compared with other units were also more likely to offer active treatment at 22+0 weeks (RR=1.86 (95% CI 1.18 to 2.94)). Most participants understood a fetus/newborn to be 'viable' if it was possible to survive, regardless of disability, with medical interventions accessible to the treating team. CONCLUSION: Compared with previous studies, we found a shift in the reported lower threshold for resuscitation in the UK, with greater acceptance of active treatment for infants <23 weeks' gestation.

Providing Ethical and Humane Care to Hospitalized, Incarcerated Patients With COVID-19.

The COVID-19 pandemic is devastating the health of hundreds of thousands of people who live and work in U.S. jails and prisons. Due to dozens of large outbreaks in correctional facilities, tens of thousands of seriously ill incarcerated people are receiving medical care in the community hospital setting. Yet community clinicians often have little knowledge of the basic rights and ethical principles governing care of seriously ill incarcerated patients. Such patients are legally entitled to make their own medical decisions just like non-incarcerated patients, and retain rights to appoint surrogate decision makers and make advance care plans. Wardens, correctional officers, and prison health care professionals should not make medical decisions for incarcerated patients and should not be asked to do so. Dying incarcerated patients should be offered goodbye visits with their loved ones, and patients from federal prisons are legally entitled to them. Community health care professionals may need to advocate for this medically vulnerable hospitalized patient population to receive ethically appropriate, humane care when under their care in community hospitals. If ethical care is being obstructed, community health care professionals should contact the prison's warden and medical director to explain their concerns and ask questions. If necessary, community clinicians should involve a hospital's ethics committee, leadership, and legal counsel. Correctional medicine experts and legal advocates for incarcerated people can also help community clinicians safeguard the rights of incarcerated patients.

Opioid Management in the Dying Child With Addiction.

The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient's goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed.

Ethical considerations in neurology during the COVID-19 pandemic.

Coronavirus disease 2019 (COVID-19) pandemic has struck many countries and caused a great number of infected cases and death. Healthcare system across all countries is dealing with the increasing medical, social, and legal issues caused by the COVID-19 pandemic, and the standards of care are being altered. Admittedly, neurology units have been influenced greatly since the first days, as aggressive policies adopted by many hospitals caused eventual shut down of numerous neurologic wards. Considering these drastic alterations, traditional ethical principles have to be integrated with state-of-the-art ethical considerations. This review will consider different ethical aspects of care in neurologic patients during COVID-19 and how this challenging situation has affected standards of care in these patients.