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1.
Perspect Biol Med ; 67(2): 227-243, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828601

RESUMO

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.


Assuntos
Consenso , Humanos , Adolescente , Desenvolvimento do Adolescente , Pais/psicologia , Tomada de Decisões , Revelação da Verdade , Recusa do Paciente ao Tratamento , Feminino , Autonomia Pessoal , Masculino
2.
Artigo em Inglês | MEDLINE | ID: mdl-38848462

RESUMO

INTRODUCTION: Patients who leave against medical advice (AMA) face increased risks of negative health outcomes, presenting a challenge for healthcare systems. This study examines demographic and hospital course factors associated with patients leaving AMA after an upper extremity (UE) orthopaedic procedure. METHODS: We analyzed 262,912 patients who underwent UE orthopaedic procedures between 2011 and 2020, using the Healthcare Cost and Utilization Project database. We then compared demographic and hospital course factors between patients who left AMA and those who did not leave AMA. RESULTS: Of 262,912 UE orthopaedic patients, 0.45% (1,173) left AMA. Those more likely to leave AMA were aged 30 to 49 (OR, 5.953, P < 0.001), Black (OR, 1.708, P < 0.001), had Medicaid (OR, 3.436, P < 0.001), and were in the 1st to 25th income percentile (OR, 1.657, P < 0.001). Female patients were less likely to leave AMA than male patients (OR, 0.647, P < 0.001). Patients leaving AMA had longer stays (3.626 versus 2.363 days, P < 0.001) and longer recovery times (2.733 versus 1.977, P < 0.001). CONCLUSION: We found that male, Black, younger than 49 years old, Medicaid-insured, and lowest income quartile patients are more likely to leave AMA after UE orthopaedic treatment.


Assuntos
Procedimentos Ortopédicos , Extremidade Superior , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Extremidade Superior/cirurgia , Adulto , Fatores de Risco , Estados Unidos , Idoso , Medicaid , Fatores Sexuais , Tempo de Internação , Adulto Jovem , Recusa do Paciente ao Tratamento
3.
Neurosurg Rev ; 47(1): 259, 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38844722

RESUMO

raumatic brain injury (TBI) is a significant global health concern, particularly affecting young individuals, and is a leading cause of mortality and morbidity worldwide. Despite improvements in treatment infrastructure, many TBI patients choose discharge against medical advice (DAMA), often declining necessary surgical interventions. We aimed to investigate the factors that can be associated with DAMA in TBI patients that were recommended to have surgical treatment. This study was conducted at single tertiary university center (2008-2018), by retrospectively reviewing 1510 TBI patients whom visited the emergency room. We analyzed 219 TBI surgical candidates, including 50 declining surgery (refused group) and the others whom agreed and underwent decompressive surgery. Retrospective analysis covered demographic characteristics, medical history, insurance types, laboratory results, CT scan findings, and GCS scores. Statistical analyses identified factors influencing DAMA. Among surgical candidates, 169 underwent surgery, while 50 declined. Age (60.8 ± 17.5 vs. 70.5 ± 13.8 years; p < 0.001), use of anticoagulating medication (p = 0.015), and initial GCS scores (9.0 ± 4.3 vs. 5.3 ± 3.2; p < 0.001) appeared to be associated with refusal of decompressive surgery. Based on our analysis, factors influencing DAMA for decompressive surgery included age, anticoagulant use, and initial GCS scores. Contrary to general expectations and some previous studies, our analysis revealed that the patients' medical conditions had a larger impact than socioeconomic status under the Korean insurance system, which fully covers treatment for TBI. This finding provides new insights into the factors affecting DAMA and could be valuable for future administrative plans involving national insurance.


Assuntos
Lesões Encefálicas Traumáticas , Alta do Paciente , Humanos , Lesões Encefálicas Traumáticas/cirurgia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Craniectomia Descompressiva , Recusa do Paciente ao Tratamento , Descompressão Cirúrgica , Escala de Coma de Glasgow
4.
BMJ Glob Health ; 9(5)2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38760025

RESUMO

INTRODUCTION: Efforts to improve oxygen access have focused mainly on the supply side, but it is important to understand demand barriers, such as oxygen refusal among caregivers. We therefore aimed to understand caregiver, community and healthcare provider (HCP) perspectives and experiences of medical oxygen treatments and how these shape oxygen acceptance among caregivers of sick children in Lagos and Jigawa states, which are two contrasting settings in Nigeria. METHODS: Between April 2022 and January 2023, we conducted an exploratory qualitative study using reflexive thematic analysis, involving semistructured interviews with caregivers (Jigawa=18 and Lagos=7), HCPs (Jigawa=7 and Lagos=6) and community group discussions (Jigawa=4 and Lagos=5). We used an inductive-deductive approach to identify codes and themes through an iterative process using the theoretical framework of acceptability and the normalisation process theory as the analytic lens. RESULTS: Medical oxygen prescription was associated with tension, characterised by fear of death, hopelessness about a child's survival and financial distress. These were driven by community narratives around oxygen, past negative experiences and contextual differences between both settings. Caregiver acceptance of medical oxygen was a sense-making process from apprehension and scepticism about their child's survival chances to positioning prescribed oxygen as an 'appropriate' or 'needed' intervention. Achieving this transition occurred through various means, such as trust in HCPs, a perceived sense of urgency for care, previous positive experience of oxygen use and a symbolic perception of oxygen as a technology. Misconceptions and pervasive negative narratives were acknowledged in Jigawa, while in Lagos, the cost was a major reason for oxygen refusal. CONCLUSION: Non-acceptance of medical oxygen treatment for sick children is modifiable in the Nigerian context, with the root causes of refusal being contextually specific. Therefore, a one-size-fits-all policy is unlikely to work. Financial constraints and community attitudes should be addressed in addition to improving client-provider interactions.


Assuntos
Cuidadores , Oxigenoterapia , Pesquisa Qualitativa , Humanos , Nigéria , Cuidadores/psicologia , Masculino , Feminino , Adulto , Criança , Recusa do Paciente ao Tratamento , Pré-Escolar , Lactente , Pessoa de Meia-Idade
5.
Support Care Cancer ; 32(6): 361, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38753165

RESUMO

PURPOSE: Significant proportions of patients either refuse or discontinue radiotherapy, even in the curative setting, leading to poor clinical outcomes. This study explores patient perceptions that underlie decisions to refuse/discontinue radiotherapy at a cancer care facility in northern Sri Lanka. METHODS: An exploratory descriptive qualitative study was carried out among 14 purposively selected patients with cancer who refused/discontinued radiotherapy. In-depth semi-structured interviews were transcribed in Tamil, translated into English, coded, and thematically analyzed. RESULTS: All participants referred to radiotherapy as "current" with several understanding the procedure to involve electricity, heat, or hot vapour. Many pointed to gaps in information provided by healthcare providers, who were perceived to focus on side effects without explaining the procedure. In the absence of these crucial details, patients relied on family members and acquaintances for information, often based on second or third-hand accounts of experiences with radiotherapy. Many felt pressured by family to refuse radiation, feared radiation, or felt ashamed to ask questions, while for others COVID-19 was an impediment. All but three participants regretted their decision, claiming they would recommend radiation to patients with cancer, especially when it is offered with curative intent. CONCLUSION: Patients with cancer who refused/discontinued radiation therapy have significant information needs. While human resource deficits need to be addressed in low-resource settings like northern Sri Lanka, providing better supportive cancer care could improve clinical outcomes and save healthcare resources that would otherwise be wasted on patient preparation for radiotherapy.


Assuntos
Neoplasias , Pesquisa Qualitativa , Recusa do Paciente ao Tratamento , Humanos , Sri Lanka , Neoplasias/radioterapia , Neoplasias/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Recusa do Paciente ao Tratamento/psicologia , Radioterapia/métodos , Radioterapia/psicologia , COVID-19 , Entrevistas como Assunto
6.
BMC Med Ethics ; 25(1): 56, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38755596

RESUMO

In case of an emergency, health insurance in Germany provides easy access to medical care in emergency departments. Over 100,000 people do not have health insurance for various reasons. They are repeatedly refused treatment in emergency rooms as their right to care outside of regular insurance is often unknown or ignored.


Assuntos
Serviço Hospitalar de Emergência , Seguro Saúde , Recusa do Paciente ao Tratamento , Humanos , Alemanha , Acessibilidade aos Serviços de Saúde , Pessoas sem Cobertura de Seguro de Saúde
7.
Support Care Cancer ; 32(6): 353, 2024 May 15.
Artigo em Inglês | MEDLINE | ID: mdl-38748187

RESUMO

PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.


Assuntos
Motivação , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , Cuidados Paliativos/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , França , Neoplasias/psicologia , Neoplasias/terapia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso de 80 Anos ou mais , Adulto , Recusa do Paciente ao Tratamento/psicologia , Ensaios Clínicos como Assunto/psicologia , Qualidade de Vida , Método Duplo-Cego , Pesquisa Qualitativa
19.
Am J Bioeth ; 24(5): 53-55, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38635441
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