Insight and the Capacity to Refuse Treatment with Electroconvulsive Therapy.

All Australian jurisdictions have statutory provisions governing the use of electroconvulsive therapy. Cases in which the patient lacks insight into their psychotic illness and need for treatment and refuses to have ECT are particularly poignant. In Re ICO [2023] QMHC 1, the Queensland Mental Health Court considered whether a patient with a treatment-resistant psychotic illness had decision-making capacity to refuse ECT. The Court also considered whether the patient had been provided with an adequate explanation of the proposed treatment including the expected benefits, risks and adverse effects of ECT. As well as deciding whether ECT was appropriate in the circumstances, the Court considered whether there were alternative treatments including another trial of the oral antipsychotic clozapine. This article reviews issues relating to lack of insight in persons with psychotic illness and relevant considerations for determining capacity to decline ECT.

[Refusal of transfusion: What is the right place for the principle of respect for autonomy?] / Refus de transfusion - quelle est la juste place du principe de respect de l'autonomie ?

Nineteen people refusing a blood transfusion in anticipation of thoracic surgery were met at the Clinical Ethics Center (AP-HP, Paris, France). The article reflects on the right place that respect for autonomy plays in medical decisions regarding (non)transfusion when medical practice would recommend it. Three patient profiles emerge: "categorical refusals", "refusals while affirming the need to live" and "refusals accompanied by doubt". Without neglecting the arguments relating to other principles of biomedical ethics (beneficence, non-maleficence, justice), the idea is to enable healthcare professionals to better assess the different situations they face and in particular those in which respect for autonomy seems essential. If the majority of people concerned by the issue are Jehovah's Witnesses, and although this religion is sometimes stigmatized, this work sheds light on the place of their wishes hold in medical decisions on (non)transfusion. Healthcare professionals could contact ethics units and ask them to carry out this same assessment in their own different.

Discharge against medical advice in rural and remote emergency departments: views of healthcare providers.

INTRODUCTION: The aim of the study was to explore, in one remote hospital, emergency department healthcare providers' experience and perceptions of the factors surrounding a patient's decision to discharge against medical advice (DAMA). The secondary objective was to gain insight into staff experiences of the current protocols for managing DAMA cases and explore their recommendations for reducing DAMA incidence. METHODS: This was a cross-sectional study involving a survey and semi-structured interviews exploring healthcare providers' (n=19) perceptions of factors perceived to be influencing DAMA, current practice for managing DAMA and recommendations for practice improvements. Health professionals (doctors, nurses, Aboriginal Health Workers) all worked in the emergency department of a remote community hospital, Queensland, Australia. Responses relating to influencing factors for DAMA were provided on a three-point rating scale from 'no influence/little influence' to 'very strong influence'. DAMA management protocol responses were a three-point rating scale from 'rarely/never' to 'always'. Semi-structured interviews were conducted after the survey and explored participants' perceptions in greater detail and current DAMA management protocol. RESULTS: Feedback from the total of 19 participants across the professions presented four prominent yet interconnected themes: patient, culture, health service and health provider, and health literacy and education-related factors. Factors that were perceived to have a strong influence on DAMA events included alcohol and drug abuse (100%), a lack of culturally sensitive healthcare services (94.7%), and family commitments or obligations (89.5%). Healthcare provider recommendations for preventing DAMA presented themes of right communication, culturally safe care (right place, right time) and the right staff to support DAMA prevention. The healthcare providers described the pivotal role the Indigenous Liaison Officer (ILO) plays and the importance of this position being filled. CONCLUSION: DAMA is a multifaceted issue, influenced by both personal and hospital system-related factors. Participants agreed that the presence of ILO and/or Aboriginal Health Workers in the emergency department may reduce DAMA occurrences for Indigenous Australians who are disproportionately represented in DAMA rates, particularly in rural and remote regions of Australia.

Cultural competences among future nurses and midwives: a case of attitudes toward Jehovah's witnesses' stance on blood transfusion.

BACKGROUND: Transcultural nursing recognises the significance of cultural backgrounds in providing patients with quality care. This study investigates the opinions of master's students in nursing and midwifery regarding the attitudes of Jehovah's Witnesses towards refusing blood transfusions. METHODS: 349 master's students in nursing and midwifery participated in a quantitative study and were surveyed via the Web to evaluate their awareness of the stance of Jehovah's Witnesses on blood transfusions and the ethical and legal dilemmas associated with caring for Jehovah's Witness (JW) patients. RESULTS: The study yielded three significant findings. It unequivocally demonstrates that nursing and midwifery students possess inadequate knowledge regarding Jehovah's Witnesses' stance on blood transfusions and their acceptance of specific blood products and medical procedures. Despite being cognisant of the ethical and legal dilemmas of caring for JW patients, students lack an understanding of patients' autonomy to reject blood transfusions and their need for bloodless medicine. Students also articulated educational needs regarding cultural competencies regarding the Jehovah's Witnesses' beliefs on blood transfusions and non-blood management techniques. CONCLUSIONS: Healthcare professionals need the knowledge and skills necessary to provide holistic, patient-centred and culturally sensitive care. This study emphasises the urgent need for university curricula and nursing postgraduate training to include modules on transcultural nursing and strategies for minimising blood loss.

[Refusal of care by the elderly]. / Le refus de soins en gériatrie.

Refusal of care is a frequent occurrence in geriatric medicine, especially among people with neurocognitive diseases, particularly in the advanced stages. These refusals of care are a daily burden, not only for the patients themselves, but also for their carers and caregivers. Although they can be prevented, the absence of a single, simple strategy for overcoming them is a real challenge for professionals and carers alike. Their management calls for an approach that is essentially non-pharmacological, always interdisciplinary, humanistic and ethically grounded.

Practice pattern and risk of not receiving planned surgery after neoadjuvant chemoradiotherapy for locally advanced oesophageal squamous cell carcinoma.

OBJECTIVES: Unlike the initial plan, some patients with oesophageal squamous cell carcinoma cannot or do not receive surgery after neoadjuvant chemoradiotherapy (nCRT). This study aimed to report the epidemiology of patients not receiving surgery after nCRT and to evaluate the potential risk of refusing surgery. METHODS: We analysed patients with clinical stage T3-T4aN0M0 or T1-T4aN1-N3M0 oesophageal squamous cell carcinoma who underwent nCRT as an initial treatment intent between January 2005 and March 2020. Patients not receiving surgery were categorized using predefined criteria. To evaluate the risk of refusing surgery, a propensity-matched comparison with those who received surgery was performed. Recurrence-free (RFS) and overall survival (OS) was compared between groups, according to clinical response to nCRT. RESULTS: Among the study population (n = 715), 105 patients (14.7%) eventually failed to reach surgery. There were three major patterns of not receiving surgery: disease progression before surgery (n = 25), functional deterioration at reassessment (n = 47), and patient's refusal without contraindications (n = 33). After propensity-score matching, the RFS curves of the surgery group and the refusal group were significantly different (P < 0.001), while OS curves were not significantly different (P = 0.069). In patients who achieved clinical complete response on re-evaluation, no significant difference in the RFS curves (P = 0.382) and in the OS curves (P = 0.290) was observed between the surgery group and the refusal group. However, among patients who showed partial response or stable disease on re-evaluation, the RFS and OS curves of the refusal group were overall significantly inferior compared to those of the surgery group (both P < 0.001). The 5-year RFS rates were 10.3% for the refusal group and 48.2% for the surgery group, and the 5-year OS rates were 8.2% for the refusal group and 46.1% for the surgery group. CONCLUSIONS: Patient's refusal remains one of the major obstacles in completing the trimodality therapy for oesophageal squamous cell carcinoma. Refusing surgery when offered may jeopardize oncological outcome, particularly in those with residual disease on re-evaluation after nCRT. These results provide significant implications for consulting patients who are reluctant to oesophagectomy after nCRT.

Treatment abandonment in children with Wilms tumor at a national referral hospital in Uganda.

INTRODUCTION: The incidence of pediatric Wilms' tumor (WT) is high in Africa, though patients abandon treatment after initial diagnosis. We sought to identify factors associated with WT treatment abandonment in Uganda. METHODS: A cohort study of patients < 18 years with WT in a Ugandan national referral hospital examined clinical and treatment outcomes data, comparing children whose families adhered to and abandoned treatment. Abandonment was defined as the inability to complete neoadjuvant chemotherapy and surgery for patients with unilateral WT and definitive chemotherapy for patients with bilateral WT. Patient factors were assessed via bivariate logistic regression. RESULTS: 137 WT patients were included from 2012 to 2017. The mean age was 3.9 years, 71% (n = 98) were stage III or higher. After diagnosis, 86% (n = 118) started neoadjuvant chemotherapy, 59% (n = 82) completed neoadjuvant therapy, and 55% (n = 75) adhered to treatment through surgery. Treatment abandonment was associated with poor chemotherapy response (odds ratio [OR] 4.70, 95% confidence interval [CI] 1.30-17.0) and tumor size > 25 cm (OR 2.67, 95% CI 1.05-6.81). CONCLUSIONS: Children with WT in Uganda frequently abandon care during neoadjuvant therapy, particularly those with large tumors with poor response. Further investigation into the factors that influence treatment abandonment and a deeper understanding of tumor biology are needed to improve treatment adherence of children with WT in Uganda.

When medical assistance in dying is not a last resort option: survey of the Canadian public.

OBJECTIVES: What are the Canadian public's understanding of and views toward medical assistance in dying (MAID) in persons refusing recommended treatment or lacking access to standard treatment or resources? DESIGN/SETTING: An online survey assessed knowledge of and support for Canadian MAID law, and views about four specific scenarios in a two (medical or psychiatric) by two (treatment refusal or lack of access) design. PARTICIPANTS: A quota sample (N=2140) matched to the 2021 Canadian census by age, gender, income, education and province. MAIN OUTCOMES: Participants' level of support for MAID in general and in the four specific scenarios. RESULTS: Only 12.1% correctly answered ≥4 of 5 knowledge questions about the MAID law; only 19.2% knew terminal illness is not required and 20.2% knew treatment refusal is compatible with eligibility. 73.3% of participants expressed support for the MAID law in general, matching a nationally representative poll that used the same question. 40.4% of respondents supported MAID for mental illnesses. Support for MAID in the scenarios depicting refusal or lack of access to treatment ranged from 23.2% (lack of access in medical condition) to 32.0% (treatment refusal in medical illness). Older age, more education, higher income, lower religious attendance or being white was associated with greater support for MAID in general but was either negatively associated or not associated with support for MAID in the four refusal or lack of access scenarios. CONCLUSIONS: Most Canadians support the current MAID law but appear unaware that MAID cases they do not support are compatible with that law. The lower support for MAID in the four scenarios cuts across sociodemographics. The gap between current policy and public opinion warrants further study. For jurisdictions debating MAID, opinion surveys may need to go beyond assessing general attitudes, and target knowledge and views regarding implications of legalisation.

Area Socioeconomic Status is Associated with Refusal of Recommended Surgery in Patients with Metastatic Bone and Joint Disease.

BACKGROUND: This study sought to identify associations between the Yost Index, a geocoded area neighborhood socioeconomic status (nSES) score, and race/ethnicity with patient refusal of recommended surgery for metastatic bone disease. METHODS: Patients with metastatic bone disease were extracted from the Surveillance, Epidemiology, and End Results database. The Yost Index was geocoded using factor analysis and categorized into quintiles using census tract-level American Community Service (ACS) 5-year estimates and seven nSES measures. Multivariable logistic regression models calculated odds ratios (ORs) of refusal of recommended surgery and 95% confidence intervals (CIs), adjusting for clinical covariates. RESULTS: A total of 138,257 patients were included, of which 14,943 (10.8%) were recommended for surgical resection. Patients in the lowest nSES quintile had 57% higher odds of refusing surgical treatment than those in the highest quintile (aOR = 1.57, 95% CI 1.30-1.91, p < 0.001). Patients in the lowest nSES quintile also had a 31.2% higher age-adjusted incidence rate of not being recommended for surgery compared with those in the highest quintile (186.4 vs. 142.1 per 1 million, p < 0.001). Black patients had 34% higher odds of refusing treatment compared with White patients (aOR = 1.34, 95% CI 1.14-1.58, p = 0.003). Advanced age, unmarried status, and patients with aggressive cancer subtypes were associated with higher odds of refusing surgery (p < 0.001). CONCLUSIONS: nSES and race/ethnicity are independent predictors of a patient refusing surgery for metastatic cancer to bone, even after adjusting for various clinical covariates. Effective strategies for addressing these inequalities and improving the access and quality of care of patients with a lower nSES and minority backgrounds are needed.

Teenage Development and Parental Authority: applying consensus recommendations to adolescent care.

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.

Factors influencing discharge against medical advice (DAMA) in traumatic brain injury patients requiring decompressive surgery: a comprehensive analysis.

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.

Risk Factors for Leaving Against Medical Advice in Patients Admitted for Upper Extremity Orthopedic Procedures.

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.

Ethical and practical considerations of pediatric refusal in clinical anesthesia: An educational review.

Children commonly refuse induction of anesthesia. Anesthesia providers must then decide whether to honor the child's dissent or to proceed over objection. In some circumstances, a forced induction involves restraining the child, incurring both practical and ethical harms to the patient-provider encounter. This educational review explores the practical dilemma encountered when a child dissents to induction of anesthesia. In the course of exploring this dilemma, dissent and associated terms are defined and compared, and the prominent ethical underpinnings regarding pediatric decision-making are described to clarify dissent as an ethical and practical concept. Important legal and professional standards are summarized, and practice trends are discussed to depict the current state of practice, including novel approaches to honoring pediatric dissent for elective surgeries. This information is then used to invite providers to consider where they ethically situate themselves within a legally and professionally defined space of acceptable practice. Finally, these considerations are synthesized to discuss important nuances regarding pediatric refusal, and some key questions are presented for clinicians to ponder as they consider their practice of choosing whether to honor pediatric dissent at induction.

'Let him die in peace': understanding caregiver's refusal of medical oxygen treatment for children in Nigeria.

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.

Refusal of patients: care for people without health insurance in German emergency departments.

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.

Qualitative evaluation of motives for acceptance or refusal of early palliative care in patients included in early-phase clinical trials in a French comprehensive cancer center: the PALPHA study.

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.

"Current", "heated rods", and "hot vapour": why patients refuse radiotherapy as a treatment modality for cancer in northern Sri Lanka.

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.

Leaving emergency departments without completing treatment among First Nations and non-First Nations patients in Alberta: a mixed-methods study.

BACKGROUND: Our previous research showed that, in Alberta, Canada, a higher proportion of visits to emergency departments and urgent care centres by First Nations patients ended in the patient leaving without being seen or against medical advice, compared with visits by non-First Nations patients. We sought to analyze whether these differences persisted after controlling for patient demographic and visit characteristics, and to explore reasons for leaving care. METHODS: We conducted a mixed-methods study, including a population-based retrospective cohort study for the period of April 2012 to March 2017 using provincial administrative data. We used multivariable logistic regression models to control for demographics, visit characteristics, and facility types. We evaluated models for subgroups of visits with pre-selected illnesses. We also conducted qualitative, in-person sharing circles, a focus group, and 1-on-1 telephone interviews with health directors, emergency care providers, and First Nations patients from 2019 to 2022, during which we reviewed the quantitative results of the cohort study and asked participants to comment on them. We descriptively categorized qualitative data related to reasons that First Nations patients leave care. RESULTS: Our quantitative analysis included 11 686 287 emergency department visits, of which 1 099 424 (9.4%) were by First Nations patients. Visits by First Nations patients were more likely to end with them leaving without being seen or against medical advice than those by non-First Nations patients (odds ratio 1.96, 95% confidence interval 1.94-1.98). Factors such as diagnosis, visit acuity, geography, or patient demographics other than First Nations status did not explain this finding. First Nations status was associated with greater odds of leaving without being seen or against medical advice in 9 of 10 disease categories or specific diagnoses. In our qualitative analysis, 64 participants discussed First Nations patients' experiences of racism, stereotyping, communication issues, transportation barriers, long waits, and being made to wait longer than others as reasons for leaving. INTERPRETATION: Emergency department visits by First Nations patients were more likely to end with them leaving without being seen or against medical advice than those by non-First Nations patients. As leaving early may delay needed care or interfere with continuity of care, providers and departments should work with local First Nations to develop and adopt strategies to retain First Nations patients in care.