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1.
J Clin Ethics ; 32(2): 127-148, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34129529

RESUMO

Clinical ethics training programs are responsible for preparing their trainees to be competent ethics consultants worthy of the trust of patients, families, surrogates, and healthcare professionals. While the American Society for Bioethics and Humanities (ASBH) offers a certification examination for healthcare ethics consultants, no tools exist for the formal evaluation of ethics trainees to assess their progress toward competency. Medical specialties accredited by the Accreditation Council for Graduate Medical Education (ACGME) use milestones to report trainees' progress along a continuum of professional development as a means of "operationalizing and implementing" medical competencies. Utilizing the Core Competencies for Healthcare Ethics Consultation and the ACGME and American Board of Pediatrics' (ABP) Pediatric Milestones Project, we developed milestones for 17 subcompetencies in clinical ethics consultation and academic bioethics. As the field of clinical ethics becomes more standardized, such tools will be needed to promote the development of robust training programs and to certify that their graduates are competent practitioners.


Assuntos
Bioética , Consultoria Ética , Certificação , Criança , Competência Clínica , Atenção à Saúde , Eticistas , Humanos , Estados Unidos
4.
Artigo em Inglês | MEDLINE | ID: mdl-39032678

RESUMO

CONTEXT: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES: To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS: We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS: Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative care and hospice (15/44, 34%). CONCLUSION: Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.

5.
J Pain Symptom Manage ; 64(3): e115-e121, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35613688

RESUMO

CONTEXT: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST process in pediatrics. OBJECTIVES: This study aims to describe interdisciplinary provider self-reported confidence, needs, and suggestions for improving the WOLST process. METHODS: A convergent parallel mixed-methods design was used. An online survey was distributed to providers involved in WOLSTs in a quaternary children's hospital between January and December 2018. The survey assessed providers' self-reported confidence in their role, in providing guidance to families about the WOLST, experiences with the WOLST process, areas for improvement, and symptom management. Kruskal-Wallis testing was used for quantitative data analysis with P values <0.05 considered significant. Analysis was performed with SPSS v27. Qualitative data were thematically analyzed using Atlas.ti.8 and NVivo. RESULTS: A total of 297 surveys were received (48% survey completion) that consisted of multiple choice, Likert-type, and yes/no questions with options for open-ended responses. Mean provider self-rated confidence was high and varied significantly between disciplines. Qualitative analysis identified four areas for refining communication: 1) between the primary team and family, 2) within the primary team, 3) between the primary team and consulting providers, and 4) logistical challenges. CONCLUSIONS: While participants' self-rated confidence was high, it varied between disciplines. Participants identified opportunities for improved communication and planning before a WOLST. Future work includes development and implementation of a best practice guideline to address gaps and standardize care delivery.


Assuntos
Hospitais Pediátricos , Cuidados Paliativos , Criança , Comunicação , Humanos , Unidades de Terapia Intensiva , Cuidados Paliativos/métodos , Inquéritos e Questionários
6.
J Pain Symptom Manage ; 62(6): 1319-1324, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33933614

RESUMO

Death by neurologic criteria is a diagnosis that has presented complexities since its inception and pediatric cases are no exception. While rare, families may request accommodation to deviate from the traditionally defined diagnostic pathway based on their beliefs, mistrust of the diagnosis, or other complex reasons. Palliative care consultation offers a unique clinical perspective to complement the work of intensivists to support families through the diagnosis and possible resolution around accommodation requests. With misinformation and high-profile cases widely visible to the public through the media, these requests require a thoughtful and informed clinical approach by all members of the interdisciplinary clinical team. Common themes in many of these cases are trauma, bias and their impact on caregivers. We use a case-based approach to explore these complexities and clinical tools.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Morte Encefálica/diagnóstico , Cuidadores , Criança , Humanos , Encaminhamento e Consulta
7.
J Pain Symptom Manage ; 62(5): 1079-1085, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33984463

RESUMO

Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric palliative care providers' effectiveness in this role, this article elucidates the clinical determination of DNC and the evolution of the ethical and legal controversies surrounding DNC. Conceptual definitions of death used in the context of DNC have been and continue to be debated amongst academicians, and children's families often have their own concept of death. Increasingly, families have brought legal cases challenging the definition of death, arguing for a right to refuse examination to diagnose DNC, and/or voicing religious objections. We describe these conceptual definitions and legal challenges then explore some potential reasons why families may dispute a determination of DNC. We conclude that working with patients, families, and healthcare providers facing DNC carries inherent and unique challenges suited to intervention by interdisciplinary palliative care teams.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Morte Encefálica/diagnóstico , Criança , Pessoal de Saúde , Humanos
8.
Pediatrics ; 147(2)2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33446508

RESUMO

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.


Assuntos
Analgésicos Opioides/uso terapêutico , Linfoma/terapia , Transtornos Relacionados ao Uso de Opioides/terapia , Manejo da Dor/ética , Cuidados Paliativos/ética , Desvio de Medicamentos sob Prescrição/prevenção & controle , Assistência Terminal/ética , Adolescente , Cuidadores , Feminino , Humanos , Linfoma/complicações , Transtornos Relacionados ao Uso de Opioides/complicações , Manejo da Dor/métodos , Cuidados Paliativos/métodos , Equipe de Assistência ao Paciente/ética , Assistência Centrada no Paciente/ética , Assistência Centrada no Paciente/métodos , Relações Profissional-Família/ética , Assistência Terminal/métodos
9.
AMA J Ethics ; 22(5): E372-379, 2020 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-32449652

RESUMO

Shared decision making (SDM) is used in adult and pediatric practice for both its ethical and its practical benefits. However, its use is complicated with adolescents whose emerging and relational autonomy is distinct from that of adults, who make decisions independently, and children, whose parents make decisions for them. This hypothetical case scenario and commentary provide clinicians with a practical and stepwise approach to SDM with adolescents as well as guidance when SDM breaks down.


Assuntos
Saúde do Adolescente , Participação do Paciente , Adolescente , Adulto , Criança , Tomada de Decisões , Tomada de Decisão Compartilhada , Humanos , Pais
10.
CA Cancer J Clin ; 53(3): 141-69, 2003.
Artigo em Inglês | MEDLINE | ID: mdl-12809408

RESUMO

In 2003, the American Cancer Society updated its guidelines for early detection of breast cancer based on recommendations from a formal review of evidence and a recent workshop. The new screening recommendations address screening mammography, physical examination, screening older women and women with comorbid conditions, screening women at high risk, and new screening technologies.


Assuntos
Neoplasias da Mama/diagnóstico , Programas de Rastreamento/normas , Adulto , Idoso , Neoplasias da Mama/epidemiologia , Diagnóstico por Imagem , Feminino , Humanos , Mamografia , Programas de Rastreamento/métodos , Pessoa de Meia-Idade , Exame Físico , Fatores de Risco
11.
CA Cancer J Clin ; 53(5): 268-91, 2003.
Artigo em Inglês | MEDLINE | ID: mdl-14570227

RESUMO

Cancer survivors are often highly motivated to seek information about food choices, physical activity, dietary supplement use, and complementary nutritional therapies to improve their treatment outcomes, quality of life, and survival. To address these concerns, the American Cancer Society (ACS) convened a group of experts in nutrition, physical activity, and cancer to evaluate the scientific evidence and best clinical practices related to optimal nutrition and physical activity after the diagnosis of cancer. This report summarizes their findings and is intended to present health care providers with the best possible information on which to help cancer survivors and their families make informed choices related to nutrition and physical activity. The report discusses nutrition and physical activity issues during the phases of cancer treatment and recovery, living after recovery from treatment, and living with advanced cancer; selected nutritional and physical activity issues such as body weight, food choices, and complementary and alternative nutritional options; and selected issues related to breast, colorectal, lung, prostate, head and neck, and upper gastrointestinal cancers. In addition, handouts containing commonly asked questions and answers and a resource list are provided for survivors and families. Tables that grade the scientific evidence for benefit versus harm related to nutrition and physical activity for breast, colorectal, lung, and prostate cancers are also included for this growing body of knowledge to provide guidance for informed decision making and to identify areas for future research.


Assuntos
Exercício Físico/fisiologia , Neoplasias/terapia , Fenômenos Fisiológicos da Nutrição , Sobreviventes , Consumo de Bebidas Alcoólicas , Peso Corporal/fisiologia , Terapias Complementares , Carboidratos da Dieta/administração & dosagem , Gorduras na Dieta/administração & dosagem , Proteínas Alimentares/administração & dosagem , Suplementos Nutricionais , Comportamento Alimentar/fisiologia , Manipulação de Alimentos/métodos , Doenças Transmitidas por Alimentos/prevenção & controle , Frutas , Humanos , Neoplasias/fisiopatologia , Apoio Nutricional , Qualidade de Vida , Verduras
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