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1.
J Adv Nurs ; 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39223032

RESUMO

OBJECTIVES: To synthesize family members' experiences and perspectives on advance care planning (ACP) in nursing homes. METHODS: The thematic synthesis is reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement. A systematic search of the APA PsycINFO, CINAHL Plus, Embase and PubMed databases is initially conducted in October 2022, and the search is updated in January 2024. Qualitative studies that presented family members' quotes regarding advance care planning in nursing homes published in a peer-reviewed journal were included. Screening and data extraction were independently performed by two reviewers, and any discrepancies were resolved with the assistance of the third author. RESULTS: A total of 1027 articles were identified, and 23 articles were included in the full-text review. Subsequently, a total of 17 studies were ultimately included, and 127 quotes were extracted and analysed. The main findings were categorized into three themes: (1) invitation to conversation and care, (2) the resident's surrogate and (3) nurses. Considering the importance of family members' roles in ACP conversations in a nursing home setting, this study provided an in-depth understanding of family members' perceptions and experiences of ACP by synthesizing qualitative studies. Family members' lack of knowledge regarding the timing and pursuits of ACP was also identified. CONCLUSION: The findings of this study provide synthesized qualitative evidence of family members' perspectives on ACP, which can inform care and treatment in nursing homes. As this study synthesizes the experiences of family members in nursing homes about ACP, the findings of this study contribute to reflecting family members' experiences and providing evidence for nursing home healthcare professionals. PATIENT OR PUBLIC CONTRIBUTION: This study reports the experiences of family members in ACP nursing homes. The findings of this study contribute to reflecting family members' experiences and building evidence for nursing home healthcare professionals.

2.
J Clin Nurs ; 33(6): 2337-2356, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38323726

RESUMO

AIM: To synthesise nurses' and physicians' experiences with withdrawing life-sustaining treatment in an intensive care unit. DESIGN: The chosen methodology is thematic synthesis. The Preferred Reporting Items for Systematic Review and Meta-Analyses and Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement. METHODS AND DATA SOURCES: A systematic search is conducted in APA PsycINFO, CINAHL Plus, EMBASE, PubMed and Web of Science following the inclusion and exclusion criteria in April 2023. Two reviewers independently screened and extracted the qualitative data. Subsequently, data analysis was conducted using thematic analysis of qualitative research. This study was not registered with any review registry due to the irrelevance of the data to health-related outcomes. RESULTS: From the 16 articles, 267 quotes were extracted and analysed. The findings of the study revealed five analytical themes: (1) tensions between interdependent collaboration and hierarchical roles; (2) tensions between dignified dying or therapeutic perspectives; (3) family members' reflections of patient's wishes; (4) tensions in family members' positions; and (5) double-sidedness of distress. CONCLUSION: This study contributes to nursing knowledge by providing a more nuanced understanding of this complex phenomenon of withdrawing life-sustaining treatment. The findings of this study have revealed significant variations globally in the practices surrounding the withdrawal of life-sustaining treatment in intensive care units, emphasising the need for further research to inform clinical practices that cater to diverse contexts. REPORTING METHOD: Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement (ENTREQ statement). PATIENT OR PUBLIC CONTRIBUTION: Since this study reported a potential collision between the patient's dignified dying and the family member's perceptions and interests, the family member's wishes should be carefully distinguished from the patient's quality of end of life in practice.


Assuntos
Pesquisa Qualitativa , Suspensão de Tratamento , Humanos , Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva , Feminino , Masculino , Adulto , Médicos/psicologia
3.
BMC Nurs ; 23(1): 467, 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38982459

RESUMO

OBJECTIVES: This systematic review aimed to synthesize evidence on the ethical dilemma's nurses encounter in end-of-life care and effective palliative care practices. The objectives were to understand key ethical issues, evaluate communication and decision-making strategies, and identify approaches to support nurses and patients. METHODS: A comprehensive search of major databases was conducted according to the PRISMA guidelines. Studies directly relating to nursing ethics, challenges in end-of-life decision-making, and palliative care practices were included. The risk of bias was assessed using ROBVIS-II. Data on ethical issues, palliative interventions, and outcomes was extracted and analyzed thematically. RESULTS: 22 studies met the inclusion criteria. Key themes that emerged were: (1) Effective communication and involving patients in decision-making are essential but complex. (2) Nurses face dilemmas around balancing autonomy, beneficence and relational issues. (3) Integrating palliative care principles enhances symptom management and aligns care with patient values. (4) Education and organizational support are needed to equip nurses with skills and coping strategies. CONCLUSION: Navigating end-of-life care requires addressing interconnected ethical, communication and support needs. While studies provided insights, further research is required on cultural competence training, standardized education programs and longitudinal evaluations.

4.
Aust Crit Care ; 2024 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-39127605

RESUMO

BACKGROUND: Timely goals-of-care (GOC) discussions are essential for end-of-life planning, particularly during acute hospital admissions, where ambiguity often persists. Frailty, prevalent in the ageing population and linked to adverse outcomes, underscores the need to align treatment strategies with quality of life. Recognising frailty as a trigger for GOC discussions during rapid response calls (RRCs) is critical for efficient resource management and improving patient outcomes. METHODS: This single-centre retrospective cohort study included all hospitalised patients aged ≥65 years admitted between September 2021 and June 2023 who experienced an RRC. Frailty was assessed using the Clinical Frailty Scale (CFS) during the RRC. The primary outcome was to investigate whether frailty, specifically assessed by the CFS as screened during an RRC, could be a suitable clinical trigger for initiating GOC discussions. We also aimed to identify the proportion of patients with frailty (CFS score: ≥5) and predictors at the time of RRC, resulting in recommendations for GOC discussions. RESULTS: Among 4954 patients, 1685 (34.0%) were classified as frail (CFS score: ≥5). Recommendations increased with frailty levels (nonfrail [CFS score: 1-4]: 6.6%, mildly frail [CFS score: 5]: 19.3%, moderate-to-severely frail [CFS score: 6-9]: 32.2%; p < 0.001). Frailty independently increased the probability of GOC recommendations during an RRC (area under the receiver operating characteristic curve = 0.71). The CFS cut-off point for GOC recommendations was ≥5. The presence of frailty was associated with higher odds of receiving GOC recommendations for mildly frail (CFS score: 5; odds ratio [OR] = 2.53; 95% confidence interval: 1.96-3.27) and moderate-to-severely frail (CFS score: 6-9; OR = 4.69; 95% confidence interval: 3.81-5.78) compared to nonfrail patients. CONCLUSION: Frailty, identified during an RRC, served as a robust trigger for GOC recommendations, highlighting the importance of tailored proactive discussions before episodes of deterioration. Higher levels of frailty (CFS score: ≥5) demonstrate practical markers for aiding clinicians with proactive GOC discussions.

5.
Indian J Crit Care Med ; 28(3): 200-250, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38477011

RESUMO

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

6.
Crit Care ; 27(1): 299, 2023 07 28.
Artigo em Inglês | MEDLINE | ID: mdl-37507800

RESUMO

BACKGROUND: The Netherlands introduced an opt-out donor system in 2020. While the default in (presumed) consent cases is donation, family involvement adds a crucial layer of influence when applying this default in clinical practice. We explored how clinicians discuss patients' donor registrations of (presumed) consent in donor conversations in the first years of the opt-out system. METHODS: A qualitative embedded multiple-case study in eight Dutch hospitals. We performed a thematic analysis based on audio recordings and direct observations of donor conversations (n = 15, 7 consent and 8 presumed consent) and interviews with the clinicians involved (n = 16). RESULTS: Clinicians' personal considerations, their prior experiences with the family and contextual factors in the clinicians' profession defined their points of departure for the conversations. Four routes to discuss patients' donor registrations were constructed. In the Consent route (A), clinicians followed patients' explicit donation wishes. With presumed consent, increased uncertainty in interpreting the donation wish appeared and prompted clinicians to refer to "the law" as a conversation starter and verify patients' wishes multiple times with the family. In the Presumed consent route (B), clinicians followed the law intending to effectuate donation, which was more easily achieved when families recognised and agreed with the registration. In the Consensus route (C), clinicians provided families some participation in decision-making, while in the Family consent route (D), families were given full decisional capacity to pursue optimal grief processing. CONCLUSION: Donor conversations in an opt-out system are a complex interplay between seemingly straightforward donor registrations and clinician-family interactions. When clinicians are left with concerns regarding patients' consent or families' coping, families are given a larger role in the decision. A strict uniform application of the opt-out system is unfeasible. We suggest incorporating the four previously described routes in clinical training, stimulating discussions across cases, and encouraging public conversations about donation.


Assuntos
Obtenção de Tecidos e Órgãos , Humanos , Consentimento Presumido , Doadores de Tecidos , Pesquisa Qualitativa , Comunicação , Tomada de Decisões
7.
BMC Med Ethics ; 24(1): 20, 2023 03 08.
Artigo em Inglês | MEDLINE | ID: mdl-36890542

RESUMO

BACKGROUND: Decisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention such as the role of next of kin in decision-making. METHODS: Electronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin. RESULTS: We received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient's previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient's wishes. There were, however, large variations in the respondents' views. CONCLUSION: This survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin's views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes.


Assuntos
Planejamento Antecipado de Cuidados , Tomada de Decisões , Adulto , Humanos , Atitude , Pessoal de Saúde , Inquéritos e Questionários
8.
Palliat Support Care ; : 1-7, 2023 Oct 20.
Artigo em Inglês | MEDLINE | ID: mdl-37859416

RESUMO

OBJECTIVES: Advance care planning (ACP) interventions are supposed to affect patients' autonomy and family health-care outcomes positively. However, the clinical benefits of ACP actualization and associated contextual factors merit questioning. Therefore, this study explores the critical contextual and procedural factors related to ACP decision-making based on the actual situation of older patients with cancer encountering end-of-life care in Taiwan. METHODS: This retrospective qualitative secondary analysis used the Kipling method (5W1H) to explore further the critical contextual and procedural factors related to ACP decision-making processes. We applied thematic analysis and dual coding for 35 narratives, including 10 patients with cancer, 10 family caregivers, and 15 health-care staff, derived from a preliminary qualitative study regarding palliative care decision-making among patients with advanced cancer, their families, and health-care staff. RESULTS: We identified 6 domains detailing the contextual factors for ACP decision-making: (1) WHO (decision makers); (2) WHAT (discussion content); (3) WHEN (care plan for which disease stage); (4) WHERE (patient's situational location); (5) WHY (reasons underpinning the decisions); and (6) HOW (the way to form the decisions). SIGNIFICANCE OF RESULTS: Using the Kipling method to elaborate the contextual factors for ACP decision-making among older patients with cancer strengthens the understanding of complicated end-of-life care decision-making procedure. This study also demonstrates the dynamic and cultural complexity and the various factors considered during end-of-life care and future ACP discussion.

9.
Prehosp Emerg Care ; 26(2): 223-232, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33320725

RESUMO

Background: End-of-life treatment decisions present special challenges for prehospital emergency providers. Paramedics regularly make value-laden choices that transcend technical judgment and professional skill, affecting the type of care, how and to whom it is provided. Changes in prehospital emergency care over the last decade have created new moral challenges for prehospital emergency providers; these changes have also accentuated the need for paramedics to make rapid and reasoned ethical judgments. Objective: The purpose of the study was to explore the decision-making process that occurs when prehospital emergency teams respond to an end-of-life call with a focus on how state authorized documents such as a Non-Hospital Do Not Resuscitate (NHDNR) or Medical/Physician's Orders for Life-Sustaining Treatment (MOLST/POLST) or lack thereof inform decision-making. This paper presents the specific circumstances that informed the need for intervention from Online Medical Direction (OLMD) framed in the perspectives and words of the prehospital providers seeking that assistance. Methods: This study involved in-depth in-person interviews with 50 providers to elicit participants' experiences in their own words using a semi-structured interview instrument. Interviews were audio recorded and transcribed with permission. Results: Five themes emerged that illuminated how and when OLMD was involved in emergency end-of-life decisions: Termination of Resuscitation (TOR); Family Revoked DNR; Missing Documents; No Documents and No CPR; and Unusual Situations. Participants illustrated how the decision to terminate efforts was best-supported when it was made by collaboration between the on-scene provider and OLMD. Participants described ethical dilemmas when families asked them to initiate CPR in the presence of DNR orders and cognitive dissonance when CPR has been initiated but a valid DNR/MOLST is subsequently located. Conclusions: The study findings demonstrate the invaluable contribution of OLMD for complex end-of-life care decisions by prehospital providers, especially when there are difficult legal, ethical, and logistical questions. OLMD provides far more than technical support.


Assuntos
Serviços Médicos de Emergência , Assistência Terminal , Pessoal Técnico de Saúde , Morte , Humanos , Ordens quanto à Conduta (Ética Médica)
10.
BMC Med Ethics ; 23(1): 12, 2022 02 16.
Artigo em Inglês | MEDLINE | ID: mdl-35172834

RESUMO

BACKGROUND: Decisions about limitations of life sustaining treatments (LST) are made for end-of-life patients in intensive care units (ICUs). The aim of this research was to explore the professional and ethical attitudes and experiences of medical professionals on treatment of end-of-life patients in ICUs in the Republic of Croatia. METHODS: A cross-sectional study was conducted among physicians and nurses working in surgical, medical, neurological, and multidisciplinary ICUs in the total of 9 hospitals throughout Croatia using a questionnaire with closed and open type questions. Exploratory factor analysis was conducted to reduce data to a smaller set of summary variables. Mann-Whitney U test was used to analyse the differences between two groups and Kruskal-Wallis tests were used to analyse the differences between more than two groups. RESULTS: Less than third of participants (29.2%) stated they were included in the decision-making process, and physicians are much more included than nurses (p < 0.001). Sixty two percent of participants stated that the decision-making process took place between physicians. Eighteen percent of participants stated that 'do-not-attempt cardiopulmonary resuscitations' orders were frequently made in their ICUs. A decision to withdraw inotropes and antibiotics was frequently made as stated by 22.4% and 19.9% of participants, respectively. Withholding/withdrawing of LST were ethically acceptable to 64.2% of participants. Thirty seven percent of participants thought there was a significant difference between withholding and withdrawing LST from an ethical standpoint. Seventy-nine percent of participants stated that a verbal or written decision made by a capable patient should be respected. Physicians were more inclined to respect patient's wishes then nurses with high school education (p = 0.038). Nurses were more included in the decision-making process in neurological than in surgical, medical, or multidisciplinary ICUs (p < 0.001, p = 0.005, p = 0.023 respectively). Male participants in comparison to female (p = 0.002), and physicians in comparison to nurses with high school and college education (p < 0.001) displayed more liberal attitudes about LST limitation. CONCLUSIONS: DNACPR orders are not commonly made in Croatian ICUs, even though limitations of LST were found ethically acceptable by most of the participants. Attitudes of paternalistic and conservative nature were expected considering Croatia's geographical location in Southern Europe.


Assuntos
Tomada de Decisões , Unidades de Terapia Intensiva , Atitude do Pessoal de Saúde , Croácia , Estudos Transversais , Morte , Feminino , Humanos , Masculino
11.
BMC Palliat Care ; 21(1): 167, 2022 Sep 28.
Artigo em Inglês | MEDLINE | ID: mdl-36167565

RESUMO

BACKGROUND: The advance directive represents patients' health care choices and fosters patients' autonomy. Nevertheless, understanding patients' wishes based on the information provided in advance directives remains a challenge for health care providers. Based on the ethical premises of positive obligation to autonomy, an advanced directive that is disease-centred and details potential problems and complications of the disease should help health care providers correctly understand patients' wishes. To test this hypothesis, a pilot-study was conducted to investigate whether physicians could make the correct end-of-life decision for their patients when patients used a disease-centred advance directive compared to a common advance directive.  MATERIAL AND METHODS: A randomised, controlled, prospective pilot study was designed that included patients with non-small cell lung cancer (NSCLC) stage VI from the Department of Haematology and Medical Oncology, University Medical Centre, Goettingen. Patients were randomised into intervention and control groups. The control group received a common advance directive, and the intervention group received a disease-centred advance directive. Both groups filled out their advance directives and returned them. Subsequently, patients were asked to complete nine medical scenarios with different treatment decisions. For each scenario the patients had to decide whether they wanted to receive treatment on a 5-point Likert scale. Four physicians were given the same scenarios and asked to decide on the treatment according to the patients' wishes as stated in their advance directives. The answers by patients and physicians were then compared to establish whether physicians had made the correct assumptions. RESULTS: Recruitment was stopped prior to reaching anticipated sample target. 15 patients with stage IV NSCLC completed the study, 9 patients were randomised into the control group and 6 patients in the intervention group. A total of 135 decisions were evaluated. The concordance between physicians' and patients' answers, was 0.83 (95%-CI 0.71-0.91) in the intervention group, compared to 0.60 (95%-CI 0.48-0.70) in the control group, and the difference between the two groups was statistically significant (p = 0.005). CONCLUSION: This pilot study shows that disease-centred advance directives help physicians understand their NSCLC patients' wishes more precisely and make treatment choices according to these wishes. TRIAL REGISTRATION: The study is registered at the German Clinical Trial Register (no. DRKS00017580, registration date 27/08/2019).


Assuntos
Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Médicos , Diretivas Antecipadas , Carcinoma Pulmonar de Células não Pequenas/terapia , Morte , Humanos , Neoplasias Pulmonares/terapia , Projetos Piloto , Estudos Prospectivos
12.
BMC Palliat Care ; 21(1): 202, 2022 Nov 22.
Artigo em Inglês | MEDLINE | ID: mdl-36419147

RESUMO

BACKGROUND: Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. METHODS/DESIGN: This study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith's critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. DISCUSSION: This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care.


Assuntos
Demência , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Assistência de Longa Duração , Morte , Pesquisa Qualitativa , Demência/terapia
13.
BMC Med Ethics ; 23(1): 13, 2022 02 17.
Artigo em Inglês | MEDLINE | ID: mdl-35172812

RESUMO

BACKGROUND: There has been no in-depth research of public attitudes on withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide and physician assisted suicide in Croatia. The aim of this study was to examine these attitudes and their correlation with sociodemographic characteristics, religion, political orientation, tolerance of personal choice, trust in physicians, health status, experiences with death and caring for the seriously ill, and attitudes towards death and dying. METHODS: A cross-sectional study was conducted on a three-stage random sample of adult citizens of the Republic of Croatia, stratified by regions, counties, and locations within those counties (N = 1203). In addition to descriptive statistics, ANOVA and Chi-square tests were used to determine differences, and factor analysis (component model, varimax rotation and GK dimensionality reduction criterion), correlation analysis (Bivariate correlation, Pearson's coefficient) and multiple regression analysis for data analysis. RESULTS: 38.1% of the respondents agree with granting the wishes of dying people experiencing extreme and unbearable suffering, and withholding life-prolonging treatment, and 37.8% agree with respecting the wishes of such people, and withdrawing life-prolonging treatment. 77% of respondents think that withholding and withdrawing procedures should be regulated by law because of the fear of abuse. Opinions about the practice and regulation of euthanasia are divided. Those who are younger and middle-aged, with higher levels of education, living in big cities, and who have a more liberal worldview are more open to euthanasia. Assisted suicide is not considered to be an acceptable practice, with only 18.6% of respondents agreeing with it. However, 40.1% think that physician assisted suicide should be legalised. 51.6% would support the dying person's autonomous decisions regarding end-of-life procedures. CONCLUSIONS: The study found low levels of acceptance of withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide and physician assisted suicide in Croatia. In addition, it found evidence that age, level of education, political orientation, and place of residence have an impact on people's views on euthanasia. There is a need for further research into attitudes on different end-of-life practices in Croatia.


Assuntos
Eutanásia , Suicídio Assistido , Adulto , Atitude , Croácia , Estudos Transversais , Morte , Humanos , Pessoa de Meia-Idade , Inquéritos e Questionários
14.
BMC Med Ethics ; 23(1): 100, 2022 10 06.
Artigo em Inglês | MEDLINE | ID: mdl-36203173

RESUMO

BACKGROUND: The terminal illness of late-stage (advanced) Alzheimer's and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. While advance directives can be patients' last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding. AIM: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are  implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests "Cease assisted feeding" but the incapacitated patient apparently expresses the desire to "Continue assisted feeding." Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives. CONCLUSION: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients' wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care?


Assuntos
Demência , Diretivas Antecipadas , Humanos , Paternalismo , Autonomia Pessoal , Procurador
15.
Palliat Support Care ; : 1-7, 2022 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-35899414

RESUMO

OBJECTIVES: Voluntary assisted dying (VAD) was legalized in Victoria, Australia, in June 2019. Victoria was the first jurisdiction in the world to require doctors to undertake training before providing VAD. This study examines data from doctors who completed the mandatory training in the first 2 years of the VAD system's operation (up to 30 June 2021). It describes the doctors who are undertaking VAD training, their post-training attitudes toward VAD participation, and their experiences of the mandatory training. METHODS: Through the online training, doctors completed a short demographic survey and undertook formal assessment of knowledge (90% pass mark). They also were invited to complete an optional survey evaluating the training. RESULTS: In total, 289 doctors passed the training, most commonly males (56%) aged 36-65 years (82%) from an urban location (72%). Most were more than 10 years post fellowship (68%) and practising as general practitioners (51%) or medical oncologists (16%). The training most commonly took 6 h (range 2 h to over 9 h). Most doctors passed the assessment at the first (65%) or second (19%) attempt. Almost all participants (97%) found the training helpful or very helpful and most reported being confident or very confident in their knowledge (93%) and application (88%) of the VAD legislation. SIGNIFICANCE OF RESULTS: Doctors reported the training was helpful and improved their confidence in knowing the law and applying it in clinical practice. The profile of trained doctors (particularly their location and specialty) suggests continued growth of participating doctors is needed to facilitate patient access to VAD. It is important that this safeguard does not discourage doctors' participation.

16.
J Law Med ; 29(3): 811-828, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36056667

RESUMO

Unlawful assisted dying practices have been reported in Australia for decades. Voluntary assisted dying (VAD) is now lawful in Victoria and Western Australia in limited circumstances and will soon be lawful in a further four Australian States. This article examines nine cases involving unlawful assisted dying practices in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) in 2019. It explores whether, if that Act had been in operation at the relevant time, these patients would have been eligible to request VAD, having regard to their decision-making capacity and their disease, illness or medical condition. Many of these patients would not have been eligible to request VAD had the legislation been operational, primarily because they lacked decision-making capacity. As VAD is lawful only in a narrow set of circumstances, unlawful assisted deaths may continue to occur in those States where voluntary assisted dying is legal.


Assuntos
Suicídio Assistido , Humanos , Vitória , Austrália Ocidental
17.
J Law Med ; 29(3): 783-810, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36056666

RESUMO

This article undertakes the first comprehensive mapping exercise of the legal regulation of voluntary assisted dying (VAD) in Victoria. Despite the detailed nature of the Voluntary Assisted Dying Act 2017 (Vic), this analysis reveals that VAD is also regulated by a diverse array of other law: a further 20 pieces of legislation and 27 broad areas of law. In some instances, this legal regulation beyond the principal VAD legislation is significant for how the VAD system operates in practice. The article then identifies the implications of this mapping exercise for the coherence of the law, focusing in particular on the domains of consistency, comprehensiveness, and completeness. Findings include identifying areas of significant incoherence and the implications of this for law reformers, policymakers, and users of the law, including patients, families, health practitioners, and health service providers.


Assuntos
Transtornos Mentais , Suicídio Assistido , Humanos
18.
Omega (Westport) ; : 302228211066690, 2022 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-35045751

RESUMO

"Do Not Resuscitate" (DNR) order is one of the challenging issues encountered in end of life care. This study aimed to determine the effect of education about DNR on the views of senior nursing students. Students, who selected elective course of palliative care and received education about DNR formed the intervention group (n = 106) while the students who did not select the lesson were in the control group (n = 107). Data were collected using a questionnaire. It revealed that the students who had education about DNR agreed with the positive statements about DNR more than the control group. Also, intervention group students had a high agreement DNR should be a part of vocational training for health professionals. It is important and necessary to focus on the special role of nurses when a DNR order is given, and nursing education raised the awareness and views about DNR according to the data from this study.

19.
Palliat Med ; 35(10): 1889-1896, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34423712

RESUMO

BACKGROUND: For a patient's legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. AIM: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. DESIGN: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. SETTING/PARTICIPANTS: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. RESULTS: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. CONCLUSION: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Austrália , Direitos Civis , Morte , Tomada de Decisões , Humanos
20.
Acta Anaesthesiol Scand ; 65(8): 1102-1108, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33964009

RESUMO

BACKGROUND: There is increasing evidence that the individual physician is the main factor influencing variability in end-of-life decision-making in intensive care units. End-of-life decisions are complex and should be adapted to each patient. Physician-related variability is problematic as it may result in unequal assessments that affect patient outcomes. The primary aim of this study was to investigate factors contributing to physician-related variability in end-of-life decision-making. METHOD: This is a qualitative substudy of a previously conducted study. In-depth thematic analysis of semistructured interviews with 19 critical care specialists from five different Swedish intensive care units was performed. Interviews took place between 1 February 2017 and 31 May 2017. RESULTS: Factors influencing physician-related variability consisted of different assessment of patient preferences, as well as intensivists' personality and values. Personality was expressed mainly through pace and determination in the decision-making process. Personal prejudices appeared in decisions, but few respondents had personally witnessed this. Avoidance of criticism and conflicts as well as individual strategies for emotional coping were other factors that influenced physician-related variability. Many respondents feared criticism for making their assessments, and the challenging nature of end-of-life decision-making lead to avoidance as well as emotional stress. CONCLUSION: Variability in end-of-life decision-making is an important topic that needs further investigation. It is imperative that such variability be acknowledged and addressed in a more formal and transparent manner. The ethical issues faced by intensivists have recently been compounded by the devastating impact of the COVID-19 pandemic, demonstrating in profound terms the importance of the topic.


Assuntos
COVID-19 , Tomada de Decisões , Pandemias , Médicos , Assistência Terminal , Atitude do Pessoal de Saúde , Cuidados Críticos , Morte , Humanos , Unidades de Terapia Intensiva , SARS-CoV-2
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