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1.
Pediatr Crit Care Med ; 25(5): e258-e262, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38695704

RESUMEN

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.


Asunto(s)
Unidades de Cuidado Intensivo Pediátrico , Privacidad , Cuidado Terminal , Humanos , Cuidado Terminal/ética , Cuidado Terminal/psicología , Unidades de Cuidado Intensivo Pediátrico/organización & administración , Niño , Relaciones Profesional-Familia , Familia/psicología
2.
Perspect Biol Med ; 67(1): 73-87, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38662064

RESUMEN

Most medical learned societies have endorsed both "equivalence" between all forms of withholding or withdrawing treatment and the "discontinuity" between euthanasia and practices to withhold or withdraw treatment. While the latter are morally acceptable insofar as they consist in letting the patient die, the former constitutes an illegitimate act of actively interfering with a patient's life. The moral distinction between killing and letting die has been hotly debated both conceptually and empirically, most notably by experimental philosophers, with inconclusive results. This article employs a "revisionary" intuititionist perspective to discuss the results of a clinical ethics study about intensivists' perceptions of withhold or withdraw decisions. The results show that practitioners' moral experience is at odds with both the discontinuity and equivalence theses. This outcome allows us to revisit certain concepts, such as intention and causal relationship, that are prominent in the conceptual debate. Intensivists also regard end-of-life decisions as being on a scale from least to most active, and whether they regard active forms of end-of-life decisions as ethically acceptable depends on the overarching professional values they endorse: the patient's best chances of survival, or the patient's quality of life.


Asunto(s)
Eutanasia , Principios Morales , Cuidado Terminal , Humanos , Eutanasia/ética , Cuidado Terminal/ética , Privación de Tratamiento/ética , Toma de Decisiones/ética , Intuición , Calidad de Vida , Actitud del Personal de Salud
3.
Anaesth Crit Care Pain Med ; 42(4): 101216, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36933797

RESUMEN

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.


Asunto(s)
Personal de Salud , Cuidados Paliativos , Cuidado Terminal , Humanos , Muerte , Cuidado Terminal/ética , Cuidados Paliativos/ética , Privación de Tratamiento/ética , Principios Morales , Ética
4.
J Pain Symptom Manage ; 65(2): e123-e136, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36244639

RESUMEN

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.


Asunto(s)
Eutanasia , Respeto , Suicidio Asistido , Cuidado Terminal , Humanos , Eutanasia/ética , Eutanasia/psicología , Cuidados Paliativos , Personeidad , Suicidio Asistido/ética , Suicidio Asistido/psicología , Cuidado Terminal/ética , Cuidado Terminal/psicología
5.
Esc. Anna Nery Rev. Enferm ; 26: e20220054, 2022.
Artículo en Portugués | LILACS, BDENF - Enfermería | ID: biblio-1384929

RESUMEN

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.


Asunto(s)
Humanos , Práctica Profesional/ética , Cuidado Terminal/ética , Toma de Decisiones/ética , Moral , Cuidados Paliativos al Final de la Vida/ética , Autonomía Personal , Derechos del Paciente/ética
7.
Acta bioeth ; 27(2): 173-179, oct. 2021.
Artículo en Inglés | LILACS | ID: biblio-1383264

RESUMEN

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.


Asunto(s)
Humanos , Cuidado Terminal/ética , Negativa del Paciente al Tratamiento/ética , Enfermo Terminal , República de Corea , Consentimiento Informado
9.
Clin Ter ; 172(4): 264-267, 2021 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-34247207

RESUMEN

ABSTRACT: In the modern era, when prolonging life is not an option, the end-of-life discussions are unavoidably influenced by Neuroethics. Despite this, it is interestingly evident how the sentiments of a terminal patient of 1885 and a physician of 2020, are still comparable. This paper pre-sents the arguments behind the so-called "Therapeutic Misconception" and the aim of palliative care to provide dying patients support. It is essential to address priorities of informed consent, signed before any remedy is provided. A key component of the newest Neuroscience research is the analysis of motivation and free will. So, it is necessary to comprehend if the patient struggles to feel at peace with these aspects of his "right to die": Is he free to choose or is he influenced by the doctors? Is this confusion an example of "Therapeutic Misconception"? Is his Informed Consent totally "Informed"? In order to broaden our understanding, we account for many critical situations, such as the mentally impaired Psychiatric patients or the famous Italian case of Eluana Englaro. In addition, we suggested some current approaches such as Artificial Intelligence, useful in preserving some cognitive functions the patient may have lost. Furthermore, research in this field is very critical and in some Catholic countries like Italy, people faced difficulties accepting the idea of the "Anticipated directives". In general, whatever the mental status and whatever the terminal state, the patients seem still far from handling their own auto-determination and their Consent, even if the ultimate goal is to die with dignity.


Asunto(s)
Consentimiento Informado/ética , Consentimiento Informado/legislación & jurisprudencia , Derechos del Paciente/ética , Derechos del Paciente/legislación & jurisprudencia , Derecho a Morir/ética , Derecho a Morir/legislación & jurisprudencia , Cuidado Terminal/ética , Cuidado Terminal/legislación & jurisprudencia , Adulto , Historia del Siglo XIX , Historia del Siglo XXI , Humanos , Consentimiento Informado/historia , Consentimiento Informado/psicología , Italia , Masculino , Derechos del Paciente/historia , Autonomía Personal , Médicos/ética , Médicos/psicología , Derecho a Morir/historia , Federación de Rusia , Cuidado Terminal/historia , Cuidado Terminal/psicología
11.
PLoS One ; 16(7): e0254148, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34270612

RESUMEN

BACKGROUND: A unique window of opportunity currently exists to generate ethical and practical considerations presented by interventional HIV cure-related research at the end-of-life (EOL). Because participants would enroll in these studies for almost completely altruistic reasons, they are owed the highest ethical standards, safeguards, and protections. This qualitative empirical ethics study sought to identify ethical and practical considerations for interventional HIV cure-related research at the EOL. METHODS AND FINDINGS: We conducted 20 in-depth interviews and three virtual focus groups (N = 36) with four key stakeholder groups in the United States: 1) bioethicists, 2) people with HIV, 3) HIV care providers, and 4) HIV cure researchers. This study produced six key themes to guide the ethical implementation of interventional HIV cure-related research at the EOL: 1) all stakeholder groups supported this research conditioned upon a clearly delineated respect for participant contribution and autonomy, participant understanding and comprehension of the risks associated with the specific intervention(s) to be tested, and broad community support for testing of the proposed intervention(s); 2) to ensure acceptable benefit-risk profiles, researchers should focus on limiting the risks of unintended effects and minimizing undue pain and suffering at the EOL; 3) only well-vetted interventions that are supported by solid pre-clinical data should be tested in the EOL translational research model; 4) the informed consent process must be robust and include process consent; 5) research protocols should be flexible and adopt a patient/participant centered approach to minimize burdens and ensure their overall comfort and safety; and 6) a participant's next-of-kin/loved ones should be a major focus of EOL research but only if the participant consents to such involvement. CONCLUSIONS: To our knowledge, this empirical ethics study generated the first ethical and practical considerations for interventional HIV cure-related research at the EOL. The ethical complexities of such research must be considered now. We must navigate this ethical conundrum so that we are good stewards of the participants' extremely altruistic gifts by maximizing the impact and social value of this research. We hope that this study will serve as the foundation for future research and discussion on this topic.


Asunto(s)
Ensayos Clínicos como Asunto/ética , Infecciones por VIH/terapia , Cuidado Terminal/ética , Anciano , Altruismo , Ensayos Clínicos como Asunto/normas , Femenino , Grupos Focales , Humanos , Consentimiento Informado , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Proyectos de Investigación/normas , Cuidado Terminal/métodos , Estados Unidos
12.
J Am Heart Assoc ; 10(15): e020949, 2021 08 03.
Artículo en Inglés | MEDLINE | ID: mdl-34308687

RESUMEN

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.


Asunto(s)
Cuidadores/psicología , Insuficiencia Cardíaca , Corazón Auxiliar , Calidad de Vida , Percepción Social , Cuidado Terminal , Planificación Anticipada de Atención/organización & administración , Actitud del Personal de Salud , Femenino , Necesidades y Demandas de Servicios de Salud , Insuficiencia Cardíaca/epidemiología , Insuficiencia Cardíaca/psicología , Insuficiencia Cardíaca/terapia , Corazón Auxiliar/ética , Corazón Auxiliar/psicología , Cuidados Paliativos al Final de la Vida/ética , Cuidados Paliativos al Final de la Vida/psicología , Cuidados Paliativos al Final de la Vida/normas , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Grupo de Atención al Paciente/normas , Investigación Cualitativa , Mejoramiento de la Calidad , Cuidado Terminal/ética , Cuidado Terminal/psicología , Cuidado Terminal/normas , Estados Unidos , Privación de Tratamiento/ética
13.
Bioethics ; 35(6): 589-595, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33950525

RESUMEN

This paper applies a relational and familial ethic to address concerns relating to nursing home deaths and advance care planning during Covid-19 and beyond. The deaths of our elderly in nursing homes during this pandemic have been made more complicated by the restriction of visitors even at the end of life, a time when families would normally be present. While we must be vigilant about preventing unnecessary deaths caused by coronavirus outbreaks in nursing homes, some deaths of our elders are inevitable. Thus, it is essential that advanced care planning occurs in a way that upholds the familial and relational aspects of elders' lives that often matter to them the most. We invoke concepts from feminist ethicists like Hilde Lindemann and Eva Kittay and introduce Avery Weisman and Thomas Hackett's concept of "appropriate death" to suggest better ways of planning for those deaths of our elderly that cannot be avoided. Our hope is to allow for deaths that are as meaningful as possible for both the elderly and the family members who survive them.


Asunto(s)
COVID-19/mortalidad , Relaciones Familiares , Familia , Hogares para Ancianos/ética , Casas de Salud/ética , Pandemias , Cuidado Terminal/ética , Planificación Anticipada de Atención , Anciano , Anciano de 80 o más Años , COVID-19/prevención & control , Brotes de Enfermedades , Ética , Humanos , Distanciamiento Físico , SARS-CoV-2
14.
Acad Med ; 96(7): 1057-1070, 2021 07 01.
Artículo en Inglés | MEDLINE | ID: mdl-33830949

RESUMEN

PURPOSE: To investigate the current state and quality of compassion education interventions offered to health care providers during training or practice, determine how the components of each education intervention map onto the domains of an empirically based clinical model of compassion, and identify the most common approaches to compassion education. METHOD: The MEDLINE, Embase, CINAHL Plus with Full Text, Sociological Abstracts, Web of Science, ERIC, and Education Research Complete databases were searched from inception to March 2020 in this systematic review. Studies that evaluated a compassion education intervention for health care providers or those in training to enhance compassion toward patients and/or families were included. A narrative synthesis of the included studies was performed. The components of each intervention were mapped onto the domains of compassion described in the Patient Compassion Model. RESULTS: One hundred eight peer-reviewed publications describing 103 interventions were included. Modalities ranged from establishing curricula and interventions in clinical settings to programs that used humanities-based reflective practices, clinical simulation, role modeling, and contemplative practices, with many education interventions adopting a multimodal approach. Most interventions mapped to the virtuous response domain of the Patient Compassion Model; very few mapped to the other domains of this model. CONCLUSIONS: Most interventions were limited as they focused on a single domain of compassion; did not adequately define compassion; were assessed exclusively by self-report; were devoid of a comparator/control group; and did not evaluate retention, sustainability, and translation to clinical practice over time. The authors suggest that compassion education interventions be grounded in an empirically based definition of compassion; use a competency-based approach; employ multimodal teaching methods that address the requisite attitudes, skills, behaviors, and knowledge within the multiple domains of compassion; evaluate learning over time; and incorporate patient, preceptor, and peer evaluations.


Asunto(s)
Bases de Datos Factuales/estadística & datos numéricos , Intervención Educativa Precoz/métodos , Empatía/ética , Personal de Salud/educación , Autoinforme/estadística & datos numéricos , Actitud del Personal de Salud , Estudios de Casos y Controles , Competencia Clínica/estadística & datos numéricos , Curriculum/tendencias , Escolaridad , Humanos , Conocimiento , Liderazgo , Aprendizaje/fisiología , Revisión de la Investigación por Pares/métodos , Entrenamiento Simulado/métodos , Cuidado Terminal/ética
15.
Medicine (Baltimore) ; 100(14): e25397, 2021 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-33832133

RESUMEN

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.


Asunto(s)
Familia/psicología , Enfermo Terminal/psicología , Neoplasias Urogenitales/mortalidad , Neoplasias Urogenitales/terapia , Privación de Tratamiento/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Actitud Frente a la Muerte , Estudios de Casos y Controles , Toma de Decisiones/fisiología , Femenino , Humanos , Japón/epidemiología , Neoplasias Renales/epidemiología , Neoplasias Renales/mortalidad , Neoplasias Renales/psicología , Neoplasias Renales/terapia , Masculino , Persona de Mediana Edad , Cuidados Paliativos/ética , Cuidados Paliativos/psicología , Pronóstico , Neoplasias de la Próstata/epidemiología , Neoplasias de la Próstata/mortalidad , Neoplasias de la Próstata/psicología , Neoplasias de la Próstata/terapia , Estudios Retrospectivos , Tasa de Supervivencia/tendencias , Cuidado Terminal/ética , Cuidado Terminal/psicología , Neoplasias de la Vejiga Urinaria/epidemiología , Neoplasias de la Vejiga Urinaria/mortalidad , Neoplasias de la Vejiga Urinaria/psicología , Neoplasias de la Vejiga Urinaria/terapia , Neoplasias Urogenitales/patología , Neoplasias Urogenitales/psicología
16.
PLoS One ; 16(3): e0247193, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33770083

RESUMEN

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.


Asunto(s)
Eutanasia/ética , Cuidados Paliativos al Final de la Vida/ética , Cuidado Terminal/ética , Adulto , Anciano , Actitud Frente a la Salud/etnología , Muerte , Ética Médica , Femenino , Conocimientos, Actitudes y Práctica en Salud/etnología , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/psicología , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Suicidio Asistido/ética , Encuestas y Cuestionarios , Inconsciencia , Reino Unido/etnología
18.
BMC Neurol ; 21(1): 133, 2021 Mar 22.
Artículo en Inglés | MEDLINE | ID: mdl-33752631

RESUMEN

BACKGROUND: Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands a better understanding of the impact of PDOC on patients, their families and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals. METHODS: Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients' family members and healthcare professionals involved in PDOC care. Families' and healthcare professionals' views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups. DISCUSSION: To our knowledge, this is the first nationwide study exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.


Asunto(s)
Lesiones Encefálicas/complicaciones , Trastornos de la Conciencia/rehabilitación , Rehabilitación Neurológica , Sistema de Registros , Cuidado Terminal/ética , Estado de Conciencia , Trastornos de la Conciencia/etiología , Familia/psicología , Personal de Salud/psicología , Humanos , Países Bajos , Estudios Prospectivos , Encuestas y Cuestionarios , Cuidado Terminal/psicología
20.
Am J Hosp Palliat Care ; 38(6): 731-733, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-33563003

RESUMEN

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.


Asunto(s)
COVID-19/enfermería , Cuidados Paliativos/ética , Prisioneros/estadística & datos numéricos , Prisiones/organización & administración , Cuidado Terminal/ética , Actitud del Personal de Salud , Humanos , Prisioneros/psicología , Estados Unidos , Poblaciones Vulnerables/estadística & datos numéricos
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