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1.
Anaesth Crit Care Pain Med ; 42(4): 101216, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36933797

RESUMO

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.


Assuntos
Pessoal de Saúde , Cuidados Paliativos , Assistência Terminal , Humanos , Morte , Assistência Terminal/ética , Cuidados Paliativos/ética , Suspensão de Tratamento/ética , Princípios Morais , Ética
2.
J Pain Symptom Manage ; 65(2): e123-e136, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36244639

RESUMO

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.


Assuntos
Eutanásia , Respeito , Suicídio Assistido , Assistência Terminal , Humanos , Eutanásia/ética , Eutanásia/psicologia , Cuidados Paliativos , Pessoalidade , Suicídio Assistido/ética , Suicídio Assistido/psicologia , Assistência Terminal/ética , Assistência Terminal/psicologia
3.
Esc. Anna Nery Rev. Enferm ; 26: e20220054, 2022.
Artigo em Português | LILACS, BDENF - Enfermagem | ID: biblio-1384929

RESUMO

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.


Assuntos
Humanos , Prática Profissional/ética , Assistência Terminal/ética , Tomada de Decisões/ética , Moral , Cuidados Paliativos na Terminalidade da Vida/ética , Autonomia Pessoal , Direitos do Paciente/ética
5.
Acta bioeth ; 27(2): 173-179, oct. 2021.
Artigo em Inglês | LILACS | ID: biblio-1383264

RESUMO

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.


Assuntos
Humanos , Assistência Terminal/ética , Recusa do Paciente ao Tratamento/ética , Doente Terminal , República da Coreia , Consentimento Livre e Esclarecido
7.
Clin Ter ; 172(4): 264-267, 2021 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-34247207

RESUMO

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.


Assuntos
Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/legislação & jurisprudência , Direitos do Paciente/ética , Direitos do Paciente/legislação & jurisprudência , Direito a Morrer/ética , Direito a Morrer/legislação & jurisprudência , Assistência Terminal/ética , Assistência Terminal/legislação & jurisprudência , Adulto , História do Século XIX , História do Século XXI , Humanos , Consentimento Livre e Esclarecido/história , Consentimento Livre e Esclarecido/psicologia , Itália , Masculino , Direitos do Paciente/história , Autonomia Pessoal , Médicos/ética , Médicos/psicologia , Direito a Morrer/história , Federação Russa , Assistência Terminal/história , Assistência Terminal/psicologia
8.
J Am Heart Assoc ; 10(15): e020949, 2021 08 03.
Artigo em Inglês | MEDLINE | ID: mdl-34308687

RESUMO

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.


Assuntos
Cuidadores/psicologia , Insuficiência Cardíaca , Coração Auxiliar , Qualidade de Vida , Percepção Social , Assistência Terminal , Planejamento Antecipado de Cuidados/organização & administração , Atitude do Pessoal de Saúde , Feminino , Necessidades e Demandas de Serviços de Saúde , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/terapia , Coração Auxiliar/ética , Coração Auxiliar/psicologia , Cuidados Paliativos na Terminalidade da Vida/ética , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/normas , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente/normas , Pesquisa Qualitativa , Melhoria de Qualidade , Assistência Terminal/ética , Assistência Terminal/psicologia , Assistência Terminal/normas , Estados Unidos , Suspensão de Tratamento/ética
10.
PLoS One ; 16(7): e0254148, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34270612

RESUMO

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.


Assuntos
Ensaios Clínicos como Assunto/ética , Infecções por HIV/terapia , Assistência Terminal/ética , Idoso , Altruísmo , Ensaios Clínicos como Assunto/normas , Feminino , Grupos Focais , Humanos , Consentimento Livre e Esclarecido , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Projetos de Pesquisa/normas , Assistência Terminal/métodos , Estados Unidos
11.
Bioethics ; 35(6): 589-595, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33950525

RESUMO

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.


Assuntos
COVID-19/mortalidade , Relações Familiares , Família , Instituição de Longa Permanência para Idosos/ética , Casas de Saúde/ética , Pandemias , Assistência Terminal/ética , Planejamento Antecipado de Cuidados , Idoso , Idoso de 80 Anos ou mais , COVID-19/prevenção & controle , Surtos de Doenças , Ética , Humanos , Distanciamento Físico , SARS-CoV-2
12.
Medicine (Baltimore) ; 100(14): e25397, 2021 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-33832133

RESUMO

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.


Assuntos
Família/psicologia , Doente Terminal/psicologia , Neoplasias Urogenitais/mortalidade , Neoplasias Urogenitais/terapia , Suspensão de Tratamento/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Estudos de Casos e Controles , Tomada de Decisões/fisiologia , Feminino , Humanos , Japão/epidemiologia , Neoplasias Renais/epidemiologia , Neoplasias Renais/mortalidade , Neoplasias Renais/psicologia , Neoplasias Renais/terapia , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/ética , Cuidados Paliativos/psicologia , Prognóstico , Neoplasias da Próstata/epidemiologia , Neoplasias da Próstata/mortalidade , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/terapia , Estudos Retrospectivos , Taxa de Sobrevida/tendências , Assistência Terminal/ética , Assistência Terminal/psicologia , Neoplasias da Bexiga Urinária/epidemiologia , Neoplasias da Bexiga Urinária/mortalidade , Neoplasias da Bexiga Urinária/psicologia , Neoplasias da Bexiga Urinária/terapia , Neoplasias Urogenitais/patologia , Neoplasias Urogenitais/psicologia
13.
Acad Med ; 96(7): 1057-1070, 2021 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-33830949

RESUMO

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.


Assuntos
Bases de Dados Factuais/estatística & dados numéricos , Intervenção Educacional Precoce/métodos , Empatia/ética , Pessoal de Saúde/educação , Autorrelato/estatística & dados numéricos , Atitude do Pessoal de Saúde , Estudos de Casos e Controles , Competência Clínica/estatística & dados numéricos , Currículo/tendências , Escolaridade , Humanos , Conhecimento , Liderança , Aprendizagem/fisiologia , Revisão da Pesquisa por Pares/métodos , Treinamento por Simulação/métodos , Assistência Terminal/ética
14.
PLoS One ; 16(3): e0247193, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33770083

RESUMO

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.


Assuntos
Eutanásia/ética , Cuidados Paliativos na Terminalidade da Vida/ética , Assistência Terminal/ética , Adulto , Idoso , Atitude Frente a Saúde/etnologia , Morte , Ética Médica , Feminino , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Suicídio Assistido/ética , Inquéritos e Questionários , Inconsciência , Reino Unido/etnologia
16.
BMC Neurol ; 21(1): 133, 2021 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-33752631

RESUMO

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.


Assuntos
Lesões Encefálicas/complicações , Transtornos da Consciência/reabilitação , Reabilitação Neurológica , Sistema de Registros , Assistência Terminal/ética , Estado de Consciência , Transtornos da Consciência/etiologia , Família/psicologia , Pessoal de Saúde/psicologia , Humanos , Países Baixos , Estudos Prospectivos , Inquéritos e Questionários , Assistência Terminal/psicologia
17.
Am J Hosp Palliat Care ; 38(6): 731-733, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33563003

RESUMO

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.


Assuntos
COVID-19/enfermagem , Cuidados Paliativos/ética , Prisioneiros/estatística & dados numéricos , Prisões/organização & administração , Assistência Terminal/ética , Atitude do Pessoal de Saúde , Humanos , Prisioneiros/psicologia , Estados Unidos , Populações Vulneráveis/estatística & dados numéricos
18.
Int Nurs Rev ; 68(2): 181-188, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33615479

RESUMO

AIM: To identify factors underlying ethical conflict occurring during the current COVID-19 pandemic in the critical care setting. BACKGROUND: During the first wave of the COVID-19 outbreak, Spanish and Italian intensive care units were overwhelmed by the demand for admissions. This fact revealed a crucial problem of shortage of health resources and rendered that decision-making was highly complex. SOURCES OF EVIDENCE: Applying a nominal group technique this manuscript identifies a series of factors that may have played a role in the emergence of the ethical conflicts in critical care units during the COVID-19 pandemic, considering ethical principles and responsibilities included in the International Council of Nurses Code of Ethics. The five factors identified were the availability of resources; the protection of healthcare workers; the circumstances surrounding decision-making, end-of-life care, and communication. DISCUSSION: The impact of COVID-19 on health care will be long-lasting and nurses are playing a central role in overcoming this crisis. Identifying these five factors and the conflicts that have arisen during the COVID-19 pandemic can help to guide future policies and research. CONCLUSIONS: Understanding these five factors and recognizing the conflicts, they may create can help to focus our efforts on minimizing the impact of the ethical consequences of a crisis of this magnitude and on developing new plans and guidelines for future pandemics. IMPLICATIONS FOR NURSING PRACTICE AND POLICY: Learning more about these factors can help nurses, other health professionals, and policymakers to focus their efforts on minimizing the impact of the ethical consequences of a crisis of this scale. This will enable changes in organizational policies, improvement in clinical competencies, and development of the scope of practice.


Assuntos
COVID-19/terapia , Tomada de Decisões/ética , Ética Institucional , Unidades de Terapia Intensiva/ética , Pneumonia Viral/terapia , Assistência Terminal/ética , COVID-19/epidemiologia , Humanos , Itália/epidemiologia , Pandemias , Pneumonia Viral/epidemiologia , Pneumonia Viral/virologia , SARS-CoV-2 , Espanha/epidemiologia
20.
J Crit Care ; 62: 185-189, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33421686

RESUMO

PURPOSE: The purpose is to explore triggers for moral distress, constraints preventing physicians from doing the right thing and ensuing consequences in making decisions for patients approaching end of life in intensive care. MATERIALS AND METHODS: The qualitative study was undertaken in a tertiary referral intensive care unit in Northern Ireland in the United Kingdom. Drawing upon patient case studies of decisions about non escalation and/or withdrawal of life support, we undertook indepth interviews with senior and junior physicians. Interviews were transcribed verbatim and narratively analysed. RESULTS: Eighteen senior and junior physicians involved in 21 patient case studies were interviewed. Analysis determined two predominant themes: key moral distress triggers; and strategies and consequences. Junior residents reported most instances of moral distress, triggered by perceived futility, lack of continuity, protracted decisions and failure to ensure 'good death'. Senior physicians' triggers included constraint of clinical autonomy. Moral distress was far reaching, affecting personal life, working relationships and career choice. CONCLUSION: This study is the first to explore physicians' moral distress in end-of-life decisions in intensive care via a narrative inquiry approach using case studies. Results have implications for the education, recruitment and retention of physicians, relevant in the Covid 19 pandemic.


Assuntos
Tomada de Decisões , Princípios Morais , Médicos/psicologia , Angústia Psicológica , Assistência Terminal/ética , Suspensão de Tratamento , Adulto , Idoso , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , Irlanda do Norte , Pesquisa Qualitativa , Reino Unido
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