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.

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.

A Systematic Review of Stakeholder Perspectives of Dignity and Assisted Dying.

INTRODUCTION: The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients. METHODS: Guided by the Systematic Evidence Based Approach, a systematic scoping review (SSR in SEBA) on perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted. The review hinged on the following questions: "what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?", "how is dignity conceptualised by patients with WTHD?" and "what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?" RESULTS: 6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified include 1) concepts of dignity through the lens of the Ring Theory of Personhood (RToP) including their various definitions and descriptions; 2) the relationship between dignity, WTHD and assisted dying with loss of dignity and autonomy foregrounded; 3) stakeholder perspectives for and against assisted dying including those of patient, healthcare provider and lawmaker; and 4) other dignity-conserving measures as alternatives to assisted dying. CONCLUSION: Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.

Cuidados terminais: reflexão filosófica sob a ótica da ética e da moral / Cuidados terminales: reflexión filosófica desde la perspectiva de la ética y la moral / Terminal care: philosophical reflection from ethical and moral perspectives

RESUMO Objetivo Objetivou-se refletir sobre a prática assistencial do cuidado ao paciente com doença terminal sob a ótica da ética e da moral. Método Trata-se de estudo teórico-reflexivo realizado a partir da análise crítica de textos filosóficos sobre ética e moral no contexto do desenvolvimento moral humano e das práticas de saúde. Resultados Na época dos filósofos gregos, a ética se baseava na busca pela felicidade; contudo, com o advento do cristianismo, ela passou a ser vista como um dever. Pela ótica de Kant, a ética e a moral são também um dever, um imperativo categórico, e a questão da manutenção da vida deve ser perseguida, abrindo espaço para a ocorrência de práticas de distanásia. Já para Hans Jonas, o dever dos profissionais de saúde é considerar a qualidade de vida dos pacientes mais do que da quantidade de vida, introduzindo conceitos dos cuidados paliativos. Conclusão e implicações para a prática Tais conceitos se modificaram ao longo da história, sendo necessário conhecê-los, fazer uma reflexão crítica sobre a finitude humana e repensar as condutas nesse processo.

RESUMEN Objetivo El objetivo fue reflexionar sobre la práctica del cuidado al paciente con enfermedad terminal desde una perspectiva de la ética y la moral. Método Se trata de un estudio teórico-reflexivo, basado en el análisis crítico de textos filosóficos sobre ética y moral en el contexto del desarrollo moral humano y las prácticas de salud. Resultados La ética, en la época de los filósofos griegos, se basaba en la búsqueda de la felicidad, sin embargo, con el advenimiento del cristianismo, ésta pasó a ser vista como un deber. Desde el punto de vista de Kant, la ética y la moral también son un deber, un imperativo categórico y la cuestión del mantenimiento de la vida debe ser perseguida, abriendo espacio para la ocurrencia de prácticas distanásicas. Para Hans Jonas, el deber de los profesionales de la salud es considerar la calidad de vida de los pacientes por encima de la cantidad de vida, introduciendo conceptos de cuidados paliativos. Conclusión e implicaciones para la práctica Tales conceptos han cambiado con la historia, requiriendo conocimiento y reflexión crítica sobre la finitud humana y repensar el comportamiento en este proceso.

ABSTRACT Objective To reflect on the care practice for patients with a terminal illness from ethical and moral perspectives. Method This is a theoretical-reflective study carried out from the critical analysis of philosophical texts on ethics and morals in the context of human moral development and health practices. Results At the time of Greek philosophers, ethics was based on the search for happiness. However, with the advent of Christianity, this came to be seen as a duty. According to Kant, ethics and morals are duties as well — a categorical imperative — and the life maintenance issue must be pursued, opening space for the occurrence of dysthanasia practices. From Hans Jonas' point of view, otherwise, health professionals must consider the quality of life of the patient over their life span, introducing concepts of palliative care. Conclusion and implications for the practice The above-mentioned concepts changed over time, and knowing them is necessary for critically reflecting on human finitude and rethinking practices that revolve around this process.

Barriers to Informed refusal in Korea / Obstáculos al rechazo informado en Corea / Barreiras à recusa informada na Coreia

Abstract In South Korea, the legal and cultural environment keeps terminally ill patients from making an informed refusal to a treatment the discontinuation of which can cause death. Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life allows several forms of informed refusal, but it is not enough. There is no explicit guarantee, at least under this law, of the right to refuse a treatment given during a period that has not reached an end-of-life process prescribed in the law. Dori, which the family of a terminal patient feels obligated to follow, makes them commit to doing what they believe is right as a family member without asking the patient's intention. Because it reduces the family's motivation to have a difficult talk about death and end-of-life with the patient, the patient is deprived of an opportunity to make a decision based on accurate information. In making a decision for the patient while patient is excluded, the family often ends up choosing a safe decision that puts physical survival first. In conclusion, the culture and the culturally influenced law are making it impractical for terminal patients to make an informed refusal.

Resumen: En Corea del Sur, el entorno legal y cultural impide a los pacientes terminales rechazar con conocimiento de causa un tratamiento cuya interrupción puede causar la muerte. La Ley de Decisiones sobre el Tratamiento de Mantenimiento de la Vida para Pacientes en Hospicio y Cuidados Paliativos o al Final de la Vida permite varias formas de rechazo informado, pero no es suficiente. No se garantiza explícitamente, al menos en esta ley, el derecho a rechazar un tratamiento administrado durante un periodo que no ha llegado a un proceso de final de vida prescrito en la ley. La ley Dori, que la familia de un paciente terminal se siente obligada a seguir, les hace comprometerse a hacer lo que creen correcto como familiares, sin preguntar la intención del paciente. Dado que reduce la motivación de la familia para tener una charla difícil sobre la muerte y el final de la vida con el paciente, éste se ve privado de la oportunidad de tomar una decisión basada en información precisa. Al tomar una decisión por el paciente mientras se le excluye, la familia suele acabar eligiendo una decisión segura que antepone la supervivencia física. En conclusión, la ley, influenciada por la cultura, está haciendo que sea poco práctico para los pacientes terminales hacer un rechazo informado.

Resumo Na Coreia do Sul, o ambiente legal e cultural mantém pacientes com doença terminal à parte de fazer uma recusa informada a um tratamento cuja descontinuação pode causar morte. O Ato sobre Decisões a respeito de Tratamento de Suporte à Vida para Pacientes em Lares de Idosos e Cuidados Paliativos ou ao Fim da Vida permite diversas formas de recusa informada mas não é suficiente. Não há uma garantia explícita, pelo menos sob esta lei, do direito de recusar um dado tratamento durante um período que não alcançou um processo de fim-da-vida prescrito na lei. Dori, que a família de um paciente terminal sente-se obrigada a seguir, faz com que eles se comprometam a fazer o que eles acreditam ser certo como um membro da família, sem perguntar a intenção do paciente. Na medida em que isto reduz a motivação da família em ter uma conversa difícil sobre morte e fim-da-vida com o paciente, o paciente é privado de uma oportunidade de tomar uma decisão baseada em informação precisa. Ao tomar uma decisão pelo paciente enquanto ele é excluído, a família frequentemente termina escolhendo uma decisão segura que coloca a sobrevivência física em primeiro lugar. Em conclusão, a cultura e a lei influenciada pela cultura estão tornando impraticável para pacientes terminais fazer uma recusa informada.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

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.

British laypeople's attitudes towards gradual sedation, sedation to unconsciousness and euthanasia at the end of life.

BACKGROUND: Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called "terminal anaesthesia", TA). However, the general public's views about sedation in EOLC are not known. We sought to investigate the general public's views to inform policy and practice in the UK. METHODS: We performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia. FINDINGS: Of the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were. INTERPRETATION: These novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

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.

Rapid review of decision-making for place of care and death in older people: lessons for COVID-19.

INTRODUCTION: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. AIMS: To explore key factors that influence PoC and PoD decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. METHODS: Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. RESULTS: 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. CONCLUSIONS: The process and outcomes of decision-making for older people are affected by many factors-all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.

Temporal Trends and Sex Differences in Intensity of Healthcare at the End of Life in Adults With Heart Failure.

Background Patients with chronic disease prefer an adequately supported death at home, but often die in the hospital. We assessed temporal trends and sex differences in healthcare intensity and location of death among decedents with heart failure. Methods and Results This was a retrospective cohort study of adults with heart failure who died between April 1, 2004 and March 31, 2017 in Ontario, Canada. We used population-based administrative databases to assess healthcare utilization during the last 6 months of life and applied multilevel multivariable logistic regression to assess whether sex was independently associated with location of death. Among 396 024 decedents with heart failure, mean (SD) age was 81.8 (10.7) years, 51.5% were women, and 53.4% had in-hospital deaths. From 2004 to 2016, there was an increase in patients receiving mechanical ventilation (15.1%-19.6%), hemodialysis (5.2%-6.8%), and cardiac revascularization (1.7%-2.3%). Relative to men, women spent fewer days in a hospital (mean, 16.4 versus 18.3; mean difference, 1.9; 95% CI, 1.7-2.0; P<0.001) and in an intensive care unit (mean, 2.1 versus 3.0; mean difference, 0.9; 95% CI, 0.8-0.9; P<0.001); and less commonly received mechanical ventilation (15.5% versus 20.8%; P<0.001); hemodialysis (4.8% versus 7.7%; P<0.001); or cardiac catheterization (2.8% versus 4.6%; P<0.001). Female sex was independently associated with lower odds of in-hospital death (odds ratio, 0.88; 95% CI, 0.87-0.89). Mean (SD) 6-month direct healthcare cost was greater for in-hospital ($52 349 [$55 649]) than out-of-hospital ($35 998 [$31 900]) death. Conclusions Among decedents with heart failure, invasive care in the last 6 months increased in prevalence over time but was less common in women, who had lower odds of dying in a hospital.

[Map of ethics conflicts in chronic patient's hospitalization]. / Mapa de conflictos éticos en hospitalización de pacientes crónicos.

The identification, priorization and anticipation of the ethics conflicts, allow the Healthcare Ethics Committees (HEC) a better approach to them, as well as the adoption of measures to prevent its appearance and/or its mitigation. For this purpose, we set ourselves the objective of knowing what they are in the present, how important they are, and what would be the future scenario to face. An qualitative structure research was made whit two focal groups whit the participation of nurses, nurse auxiliary and doctors from the hospitalization area, they also answer a future ethics conflicts Decalogue. The results were tested after by their importance level (Relevance-Frequency-Consistency). The medium age of the participants was 34,7 +- 15,4, whit a medium experience at work of 11,7 +- 15,4 years. A total of 40 ethics conflicts was identify grouped in 5 risk areas: professional, assistance, social, organizational and legal. From there 21 results the more important, between them we find patient abandonment, inexistence of internal performance protocols, patient and relatives false expectations waiting for non-assistance care, unnecessary care at the end of the life, lack of rules for family / caregivers, and ignorance of legality. The more important ethical dilemmas for the future identified by the personal will be patients in abandonment, the lack of sociohealth resources, conflicts with family / caregivers situation and lack of information for decision making at the end of the life. The ethical conflicts between the personal from a chronic patients hospital and the relatives/caregivers was identifying, the most important were prioritized, and futures were anticipated. In these scenarios, we highlight abandonment as the most important. A map of ethics conflicts is a good tool to identify risk areas for ethics conflicts, we see the difference between the ethics conflicts found in other kind of hospitals. The map of ethics conflicts need to be update periodically to keep the validity.

Ethical aspects in the care of a child with infantile spinal muscular atrophy (SMA).

The pediatrician has a privileged relationship with a child with infantile spinal muscular atrophy (SMA). At all times, he/she must be the child's mentor, promoting a comprehensive approach and support in order to ensure the best possible solution for the patient's autonomy. In all circumstances, an ethical stance is essential. After a reminder on the notions of ethics of care, we will address various ethical questions encountered through three critical situations during the care of a child with infantile spinal muscular atrophy: the announcement of the diagnosis, the transmission of information on innovative therapies, and palliative care and end-of-life support. © 2020 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.

To comfort always: Are we ignoring this duty in Covid protocols?

COVID-19 is an amplifier of serious physical suffering and emotional trauma, which together could be all-consuming. It is important for health systems to go beyond methods of prevention and treatment, and focus on the palliation of suffering, and to systematically integrate palliative care into Covid-19 management.

Further, in cases where the triage process indicates poor chances of survival, it is particularly important to respect autonomy by honest and sensitive disclosure of prognosis, and to jointly arrive at goals of care. Hooking every dying person to a ventilator would violate the ethical principles of beneficence and non-maleficence. It is also important to ensure at least electronic communication between the patient and family members.

Keywords: Covid-19, palliative care, end of life care, isolation, quarantine, intensive care, ethics of intubation, consent

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[Humanize Death in a Time of Sanitary Crisis: Accompanied Die, Farewell and Receive Spiritual Care]. / Humanizar la Muerte en Tiempos de Crisis Sanitaria: Morir Acompañado, Despedirse y Recibir Atención Espiritual.

The crisis in the health system caused by COVID-19 has left some important humanitarian deficits on how to care for the sick in their last days of life. The humanization of the dying process has been affected in three fundamental aspects, each of which constitutes a medical and ethical duty necessary. In this study, I analyze why dying accompanied, with the possibility of saying goodbye and receiving spiritual assistance, constitutes a specific triad of care and natural obligations that should not be overlooked - even in times of health crisis - if we do not want to see human dignity violated and violated some fundamental rights derived from it.

"The Hopkins Mongol Case": The Dawn of the Bioethics Movement.

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.