Boundary Crossers: How Providers Facilitate Ethnic Minority Families' Access to Dementia Services.

OBJECTIVES: Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of "boundary crossers," this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. METHODS: Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in one of seven languages and/or in English, then translated and transcribed verbatim into English. The data were analyzed thematically. RESULTS: Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families' role. DISCUSSION: In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely undervalued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services.

The ethical implications of paradoxical lucidity in persons with dementia.

This case report describes the ethical implications of paradoxical lucidity in persons with severe stage dementia. Paradoxical lucidity describes an episode of unexpected communication or connectedness in a person who is believed to be noncommunicative due to a progressive and pathological process that causes dementia. A caregiver who witnesses an event of paradoxical lucidity may experience it as ethically and emotionally transformative. We provide an ethical framework for addressing this event in clinical practice. The framework addresses clinician interactions with the patient, caregiver, and family to improve understanding of paradoxical lucidity and to enhance patient care, caregiver well-being, and decision-making. Participants for this case study consented to having the case published. Participant names are changed to protect confidentiality.

Fragilidades e vivências de enfermeiros na abordagem a famí­lia do doador de órgãos e tecidos / Fragilities and experiences of nurses in the approach to the family of the organ and tissue donor

Objetivo: Desvelar as fragilidades e a vivência de enfermeiros na abordagem de família do doador de órgãos e tecidos. Método: Pesquisa de abordagem qualitativa com análise de conteúdo de Bardin, realizada com sete enfermeiros em um hospital de médio porte no interior de São Paulo, Brasil. Resultado: Os dados obtidos foram agrupados em três categorias centrais: Conhecimento dos enfermeiros no contexto da abordagem familiar do potencial doador de órgãos e tecidos; Fragilidades vivenciadas por enfermeiros no contexto da comunicação de más notícias para familiares do potencial doador de órgãos e tecidos e Experiências de enfermeiros diante do diagnóstico de morte encefálica e dos fatores determinantes para obtenção de órgãos e tecidos. Conclusão: As experiências dos enfermeiros frente, às fragilidades encontradas e vivenciadas na abordagem familiar de potencial doador de órgãos, são caracterizadas por conflitos e situações que expõem o profissional a uma atmosfera de sentimentos de acolhimento e de empatia.(AU)

Objective: To unveil the weaknesses and the experience of nurses in approaching the organ and tissue donor family. Method: Qualitative research with content analysis by Bardin, carried out with seven nurses in a medium-sized hospital in the interior of São Paulo, Brazil. Results: The data obtained were grouped into three central categories: Nurses' knowledge in the context of the family approach to the potential organ and tissue donor; Weaknesses experienced by nurses in the context of communicating bad news to family members of the potential organ and tissue donor and Nurses' experiences in the face of brain death diagnosis and the determining factors for obtaining organs and tissues. Conclusion: The nurses' experiences in face of the weaknesses found and experienced in the family approach of potential organ donors, are characterized by conflicts and situations that expose the professional to an atmosphere of feelings of welcome and empathy.(AU)

Objetivo: Dar a conocer las debilidades y la experiencia de las enfermeras en el acercamiento a la familia del donante de órganos y tejidos. Método: Investigación cualitativa con análisis de contenido de Bardin, realizada con siete enfermeras en un hospital de mediano tamaño del interior de São Paulo, Brasil. Resultado: Los datos obtenidos se agruparon en tres categorías centrales: Conocimiento del enfermero en el contexto del abordaje familiar del potencial donante de órganos y tejidos; Debilidades vividas por enfermeras en el contexto de comunicar malas noticias a familiares del potencial donante de órganos y tejidos y Experiencias de enfermeras ante el diagnóstico de muerte encefálica y los determinantes para la obtención de órganos y tejidos. Conclusión: Las vivencias de las enfermeras ante las debilidades encontradas y vividas en el abordaje familiar de los potenciales donantes de órganos, se caracterizan por conflictos y situaciones que exponen al profesional a un clima de sentimientos de acogida y empatía.(AU)

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.

Disagreement About Surgical Intervention in Trisomy 18.

In this case, we explore physician conflict with performing surgery (tracheostomy) for long-term ventilation in a term infant with trisomy 18 and respiratory failure. Experts in neonatal-perinatal medicine, pediatric bioethics, and pediatric palliative care have provided comments on this case. An additional commentary was written by the parent of another infant with trisomy 18, who is also a medical provider (physical therapist).

Perspectives on Telephone and Video Communication in the Intensive Care Unit during COVID-19.

Rationale: During the coronavirus disease (COVID-19) pandemic, many intensive care units (ICUs) have shifted communication with patients' families toward chiefly telehealth methods (phone and video) to reduce COVID-19 transmission. Family and clinician perspectives about phone and video communication in the ICU during the COVID-19 pandemic are not yet well understood. Increased knowledge about clinicians' and families' experiences with telehealth may help to improve the quality of remote interactions with families during periods of hospital visitor restrictions during COVID-19.Objectives: To explore experiences, perspectives, and attitudes of family members and ICU clinicians about phone and video interactions during COVID-19 hospital visitor restrictions.Methods: We conducted a qualitative interviewing study with an intentional sample of 21 family members and 14 treating clinicians of cardiothoracic and neurologic ICU patients at an academic medical center in April 2020. Semistructured qualitative interviews were conducted with each participant. We used content analysis to develop a codebook and analyze interview transcripts. We specifically explored themes of effectiveness, benefits and limitations, communication strategies, and discordant perspectives between families and clinicians related to remote discussions.Results: Respondents viewed phone and video communication as somewhat effective but inferior to in-person communication. Both clinicians and families believed phone calls were useful for information sharing and brief updates, whereas video calls were preferable for aligning clinician and family perspectives. Clinicians and families expressed discordant views on multiple topics-for example, clinicians worried they were unsuccessful in conveying empathy remotely, whereas families believed empathy was conveyed successfully via phone and video. Communication strategies suggested by families and clinicians for remote interactions include identifying a family point person to receive updates, frequently checking family understanding, positioning the camera on video calls to help family see the patient and their clinical setting, and offering time for the family and patient to interact without clinicians participating.Conclusions: Telehealth communication between families and clinicians of ICU patients appears to be a somewhat effective alternative when in-person communication is not possible. Use of communication strategies specific to phone and video can improve clinician and family experiences with telehealth.

Obstinación terapéutica y su límite con la ética: ¿cuándo detenerse? / Therapeutic effort limit, when do we stop?

Obstinacy or therapeutic cruelty is a medical practice based on the application of extraordinary and disproportionate methods of life support in terminally ill or irrecoverable patients. It is not without risks and can cause physical, psychological and social damage, which is why this practice is not ethically acceptable. It violates the four principles of bioethics: non-maleficence, beneficence, justice and autonomy. The reasons that lead to therapeutic obstinacy are: 1) lack of a definitive diagnosis; 2) false expectation of improvement of the patient; 3) disagreement (between doctors and family or between doctors themselves) with respect the patient's situation; 4) difficulty in communicating with the patient and his/her family; 5) compliance with unrealistic or futile treatments; 6) cultural or spiritual barriers and 7) medical-legal aspects. Limitation of therapeutic effort (LTE) is a deliberate or thoughtful decision about the non-implementation or withdrawal of therapeutic measures that will not provide significant benefit to the patient. But, refusing a treatment, must not imply the artificial acceleration of the death process. Chile does not contemplate euthanasia or assisted suicide in its legislation. Criteria used to justify the limitation of the therapeutic effort are: 1) futility of the treatment (futility); 2) declared wishes of the patient; 3) quality of life and 4) economic cost. The Healthcare Ethics Committee of the Hospital de Urgencia Asistencia Pública has prepared a LET Clinical Guide, proposing a decision-making flow chart that takes in account the autonomy of the patient, the opinion of the medical team, patient and family. In case of disagreement, the Healthcare Ethics Committee's may be requested to issue a pronouncement.

La obstinación o ensañamiento terapéutico es una práctica médica basada en la aplicación de métodos extraordinarios y desproporcionados de soporte vital en enfermos terminales o irrecuperables. No está exenta de riesgos y puede producir daño físico, psicológico y social, motivo por el cual no es aceptable desde el punto de vista ético. Viola los cuatro principios de la bioética: no maleficencia, beneficencia, justicia y autonomía. Las razones que conducen a la obstinación terapéutica son: 1) la falta de un diagnóstico definitivo; 2) la falsa expectativa en el mejoramiento del paciente; 3) el desacuerdo (entre médicos y familia o entre los médicos mismos) con la situación del paciente; 4) la dificultad para comunicarse con el paciente y con la familia; 5) la conformidad con tratamientos poco realistas o fútiles; 6) barreras culturales o espirituales y 7) aspectos médico legales. La limitación del esfuerzo terapéutico (LET) es una decisión deliberada o meditada sobre la no implementación o la retirada de medidas terapéuticas que no aportarán un beneficio significativo al paciente. Pero, rechazar un tratamiento no puede implicar la aceleración artificial del proceso de la muerte. Chile no contempla en su legislación la eutanasia ni el suicidio asistido. Criterios utilizados para justificar o no, la limitación del esfuerzo terapéutico: 1) la inutilidad del tratamiento (futilidad); 2) los deseos expresos del paciente; 3) la calidad de vida y 4) el costo económico. El Comité de Ética Asistencial del Hospital de Urgencia Asistencia Pública, ha elaborado una Guía Clínica de LET. Propone un flujograma de toma de decisiones que considera la autonomía del paciente, la postura tanto del equipo médico, del paciente y su familia y en caso de no acuerdo, del comité de Ética Asistencial.

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.

Aspectos bioéticos dos cuidados em saúde às pessoas idosas ao fim da vida / Bioethical aspects of health care provided to older adults at the end of their lives / Aspectos bioéticos de los cuidados de salud a adultos mayores en el final de la vida

Objetivo: analisar a produção científica nacional e internacional, buscando as interfaces existentes entre os princípios bioéticos e os cuidados em saúde prestados ao fim da vida às pessoas idosas. Método: revisão integrativa, cuja busca ocorreu entre outubro e novembro de 2019 nas bases de dados Medline via Pubmed, Lilacs e Scopus com os descritores: "Palliative Care", "Aged" e "Bioethics" de 2014-2019. Resultados: a partir dos artigos selecionados, emergiram as seguintes categorias: condutas terapêuticas frente aos cuidados ao fim da vida; tomada de decisão nos cuidados ao fim da vida; e desafios nos cuidados ao fim da vida. Conclusão: destaca-se a relevância dos profissionais manterem o compromisso com a pessoa idosa e sua família de forma a considerar suas subjetividades e preferências e os instrumentalizar para que os cuidados sejam pautados em princípios bioéticos, para assim proporcionar um processo de morte e de morrer com dignidade.

Objective: to examine the Brazilian and international scientific production for connections between bioethical principles and the health care provided to older adults at the end of their lives. Method: between October and November 2019 this integrative review searched the Medline (Pubmed), Lilacs, and Scopus databases using the descriptors: "Palliative Care", "Aged", and "Bioethics" for the period 2014-2019. Results: the following categories emerged from the selected articles: therapeutic conducted with regard to end-of-life care; decision making on end-of-life care; and challenges in end-of-life care. Conclusion: of particular importance is for health professionals to uphold their commitment to older adults and their families, consider their subjectivities and preferences, and empower and equip them so that care is guided by bioethical principles in order to assure a dignified process of dying and death.

Objetivo: examinar la producción científica brasileña e internacional en busca de conexiones entre los principios bioéticos y la atención médica brindada a los adultos mayores al final de sus vidas. Método: entre octubre y noviembre de 2019, esta revisión integradora buscó en las bases de datos Medline (Pubmed), Lilacs y Scopus utilizando los descriptores: "Cuidados paliativos", "Envejecido" y "Bioética" para el período 2014-2019. Resultados: las siguientes categorías surgieron de los artículos seleccionados: terapéutico realizado con respecto a la atención al final de la vida; toma de decisiones sobre la atención al final de la vida; y desafíos en la atención al final de la vida. Conclusión: es de particular importancia que los profesionales de la salud mantengan su compromiso con los adultos mayores y sus familias, consideren sus subjetividades y preferencias, y los empoderen y equipen para que la atención se guíe por principios bioéticos para asegurar un proceso digno de muerte y muerte.

Nurses' Role in Providing Comprehensive Communication, Prognostication, and Palliative Care During the COVID-19 Pandemic.

This article presents the case of a mother of young children who has terminal stage IV cancer with whom providers had not discussed goals of care and prognostication. Communications about prognostication and goals of care are commonly initiated by physicians. Adolescents and young and middle-age adults with complex chronic or terminal illness often are not provided with timely, clear, complete information or palliative care support. Early palliative care for chronically ill patients facilitates discussions of prognostication and goals of care, in addition to providing symptom management. Such discussions do not diminish hope but rather allow patients to adjust hope to attain an optimal quality of life. Nurses can become active, confident advocates for patients with terminal illness of any age, and they are well positioned to assess patients and engage in goals of care and end-of-life conversations. It is especially important that palliative care nurses promote and maintain these early and comprehensive discussions during the COVID-19 pandemic because this population is at a high risk of complications from the coronavirus.

Critical care nurses' communication experiences with patients and families in an intensive care unit: A qualitative study.

This study evaluated the communication experiences of critical care nurses while caring for patients in an intensive care unit setting. We have collected qualitative data from 16 critical care nurses working in the intensive care unit of a tertiary hospital in Seoul, Korea, through two focus-group discussions and four in-depth individual interviews. All interviews were recorded and transcribed verbatim, and data were analyzed using the Colaizzi's method. Three themes of nurses' communication experiences were identified: facing unexpected communication difficulties, learning through trial and error, and recognizing communication experiences as being essential for care. Nurses recognized that communication is essential for quality care. Our findings indicate that critical care nurses should continuously aim to improve their existing skills regarding communication with patients and their care givers and acquire new communication skills to aid patient care.

The effects of nonconventional palliative and end-of-life care during COVID-19 pandemic on mental health-Junior doctors' perspective.

The COVID-19 pandemic has changed the way doctors approach palliative and end-of-life care, which has undoubtedly affected the mental health of patients, families, and health care professionals. Given these circumstances, doctors working on the front line are vulnerable to moral injury and compassion fatigue. This is a reflection of 2 junior doctors experiencing firsthand demands of caring for patients during the outbreak. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery.

During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.

Effect of Intensivist Communication in a Simulated Setting on Interpretation of Prognosis Among Family Members of Patients at High Risk of Intensive Care Unit Admission: A Randomized Trial.

Importance: Discordance about prognosis between a patient's health care decision-making surrogate and the treating intensivist is common in the intensive care unit (ICU). Empowering families, friends, and caregivers of patients who are critically ill to make informed decisions about care is important, but it is unclear how best to communicate prognostic information to surrogates when a patient is expected to die. Objective: To determine whether family members, who are often health care decision-making surrogates, interpret intensivists as being more optimistic when questions about prognosis in the ICU are answered indirectly. Design, Setting, and Participants: This web-based randomized trial was conducted between September 27, 2019, and October 17, 2019, among a national sample of adult children, spouses, partners, or siblings of people with chronic obstructive pulmonary disease who were receiving long-term oxygen therapy. Participants were shown video vignettes depicting an intensivist answering a standardized question about the prognosis of a patient at high risk of death on day 3 of ICU admission. Participants were excluded if they had worked as a physician, nurse, or advanced health care practitioner. Data were analyzed from October 18, 2019, to November 12, 2019. Interventions: Participants were randomized to view 1 of 4 intensivist communication styles in response to the question "What do you think is most likely to happen?": (1) a direct response (control), (2) an indirect response comparing the patient's condition with that of other patients, (3) an indirect response describing the patient's deteriorating physiological condition, or (4) redirection to a discussion of the patient's values and goals. Main Outcomes and Measures: Participant responses to 2 questions: (1) "If you had to guess, what do you think the doctor thinks is the chance that your loved one will survive this hospitalization?" and (2) "What do you think are the chances that your loved one will survive this hospitalization?" answered using a 0% to 100% probability scale. Results: Among 302 participants (median [interquartile range] age, 49 [38-59] years; 204 [68%] women) included in the trial, 165 (55%) were adult children of the individual with chronic obstructive pulmonary disease; 77 participants were randomized to view a direct response, 77 participants were randomized to view an indirect response referencing other patients, 68 participants were randomized to view an indirect response referencing physiological condition, and 80 participants were randomized to view a redirection response. Compared with participants who viewed a direct response, participants who viewed an indirect response referencing other patients (ß = 10 [95% CI, 1-19]; P = .03), physiological condition (ß = 10 [95% CI, 0-19]; P = .04), or redirection to a discussion of the patient's values and goals (ß = 19 [95% CI, 10-28]; P < .001) perceived the intensivist to have a significantly more optimistic prognostic estimate. Conclusions and Relevance: These findings suggest that family members interpret indirect or redirection responses to questions about prognosis in the ICU setting as more optimistic than direct responses. Trial Registration: ClinicalTrials.gov Identifier: NCT04239209.

A Team-Based Early Action Protocol to Address Ethical Concerns in the Intensive Care Unit.

BACKGROUND: Ethical conflicts complicate clinical practice and often compromise communication and teamwork among patients, families, and clinicians. As ethical conflicts escalate, patient and family distress and dissatisfaction with care increase and trust in clinicians erodes, reducing care quality and patient safety. OBJECTIVE: To investigate the effectiveness of a proactive, team-based ethics protocol used routinely to discuss ethics-related concerns, goals of care, and additional supports for patients and families. METHODS: In a pre-post intervention study in 6 intensive care units (ICUs) at 3 academic medical centers, the electronic medical records of 1649 patients representing 1712 ICU admissions were studied. Number and timing of family conferences, code discussions with the patient or surrogate, and ethics consultations; palliative care, social work, and chaplain referrals; and ICU length of stay were measured. Preintervention outcomes were compared with outcomes 3 and 6 months after the intervention via multivariate logistic regression controlled for patient variables. RESULTS: The odds of receiving a family conference and a chaplain visit were significantly higher after the intervention than at baseline. The number of palliative care consultations and code discussions increased slightly at 3 and 6 months. Social work consultations increased only at 6 months. Ethics consultations increased at both postintervention time points. Length of ICU stay did not change. CONCLUSIONS: When health care teams were encouraged to communicate routinely about goals of care, more patients received needed support and communication barriers were reduced.