Ethical decision making with end-of-life care: palliative sedation and withholding or withdrawing life-sustaining treatments.
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SUBMITTER: Olsen ML
PROVIDER: S-EPMC2947968 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Decisions of withholding or withdrawing life sustaining-treatments in emergency department are part of current practice but the decision-making process remains poorly described in the literature. STUDY OBJECTIVE:We conducted a study in two phases, the first comprising a retrospective chart review study of patients dying in the ED and the second comprising survey study of health care workers at 10 urban emergency departments in France. METHOD:In a first step, we analyzed medical records based on fifteen criteria of the decision-making process grouped into four categories: the collegiality, the traceability, the management and the communication as recommended by the international guidelines. In a second step, we conducted an auto-administrated survey to assess how the staff members (medical, paramedical) feel with the decision-making process. RESULTS:There were 273 deaths which occurred in the ED over the study period and we included 145 (53.1%) patients. The first-step analysis revealed that the traceability of the decision and the information given to patient or the relatives were the most reported points according to the recommendations. Three of the ten emergency departments had developed a written procedure. The collegial discussion and the traceability of the prognosis assessment were significantly increased in emergency department with a written procedure as well as management of pain, comfort care, and the communication with the patient or the relatives. In the second-step analysis, among the 735 staff members asked to take part in the survey, 287 (39.0%) answered. The medical and paramedical staff expressed difficult experience regarding the announcement and the communication with the patient and the relatives. CONCLUSION:The management of the decision to withhold or withdraw life-sustaining treatments must be improved in emergency departments according to the guidelines. A standard written procedure could be useful in clinical practice despite the lack of experienced difference between centers with and without procedures.
| S-EPMC7282105 | biostudies-literature
Project description:BackgroundWith paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing LST at the end of life in paediatric patients. In this study, we aimed to synthesise results from the literature on physicians' perceptions about decision-making when dealing with withholding/withdrawing life-sustaining treatments in paediatric patients.MethodsWe conducted a systematic review of empirical qualitative studies. Five electronic databases (Pubmed, Cinahl®, Embase®, Scopus®, Web of Science™) were exhaustively searched in order to identify articles published in English from inception through March 17, 2021. Analysis and synthesis were guided by the Qualitative Analysis Guide of Leuven.ResultsThirty publications met our criteria and were included for analysis. Overall, we found that physicians agreed to involve parents, and to a lesser extent, children in the decision-making process about withholding/withdrawing LST. Our analysis to identify conceptual schemes revealed that physicians divided their decision-making into three stages: (1) early preparation via advance care planning, (2) information giving and receiving, and (3) arriving at the final decision. Physicians considered advocating for the best interests of the child and of the parents as their major focus. We also identified moderating factors of decision-making, such as facilitators and barriers, specifically those related to physicians and parents that influenced physicians' decision-making.ConclusionsBy focusing on stakeholders, structure of the decision-making process, ethical values, and influencing factors, our analysis showed that physicians generally agreed to share the decision-making with parents and the child, especially for adolescents. Further research is required to better understand how to minimise the negative impact of barriers on the decision-making process (e.g., difficult involvement of children, lack of paediatric palliative care expertise, conflict with parents).
| S-EPMC9229823 | biostudies-literature
Project description:ObjectiveCaregivers of children with medical complexity (CMC) face decisions about life-sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision-making about tracheostomy placement that might apply to other LST in CMC.DesignThis qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary-care children's hospital in North Carolina. Participants were asked about their perspectives on the tracheostomy decision-making process. Data were transcribed, and coded. Using thematic content analysis, we inductively developed a tracheostomy decision-making framework and process.ResultsMany factors influenced caregivers' decisions, including children's well-being and caregivers' values, faith, knowledge, experience, emotional state, and social factors; preserving the child's life was the most important. HCPs consider many clinical and nonclinical factors; recommending tracheostomy for children with limited survival, perceived poor functioning and quality of life, and progressive conditions is ethically difficult. The framework of tracheostomy decision-making has inter-related caregiver- and HCP-level factors that influence the process. The framework contains elements not captured in a shared decision-making model, but better fits a collaborative decision-making (CDM) model. The tracheostomy CDM process that emerged from the data has two nonsequential components that HCPs could use: (1) gaining understanding and (2) holding decision-making conversations.ConclusionsCDM could be a useful model for clinicians guiding families about tracheostomy for CMC. The applicability of CDM for decision-making about other LSTs needs further exploration.
| S-EPMC9825978 | biostudies-literature
Project description:BackgroundDecisions of withholding or withdrawing life-sustaining treatment are frequent in emergency departments (ED) and patients are often unable to communicate their wishes concerning end of life desires.ObjectiveTo evaluate the participation of general practitioners (GPs) during the decision-making process of withholding or withdrawing life-sustaining treatments in ED.DesignProspective observational multicenter study.PatientsWe included patients for whom a decision of withdrawing or withholding life-sustaining treatments was made in ED. For each patient, we enrolled one general practitioner.Main measuresGPs were interviewed about their perception of end of life patient's management and the communication with ED and families.Key resultsThere were 109 potential patient participants. We obtained answers from 54 (49.5%) of the patient's associated GPs. Only 4 (7.4%) GPs were involved during the decision-making process of withholding or withdrawing life-sustaining treatments. Among GPs, 29 (53.7%) were contacted by family after the decision, most often to talk about their difficult experience with the decision. A majority (94%) believed their involvements in these decisions were important and 68% wished to "always" participate in end of life decisions despite the fact that they usually don't participate in these decisions. Finally, 66% of GPs believed that management of end of life in the emergency department was a failure and should be anticipated.ConclusionsGPs would like to be more involved and barriers to GP involvement need to be overcome. We do not have any outcome data to suggest that routine involvement of GPs in all end of life patients improves their outcomes. Moreover, it requires major system and process-based changes to involve all primary care physicians in ED decision-making.Nih trial registry numberNCT02844972.
| S-EPMC6957665 | biostudies-literature
Project description:PurposeThis cross-sectional study investigated the status of life-sustaining treatment (LST) practices and identified characteristics and factors influencing decision-making practices.Materials and methodsThe National Agency for Management of Life-sustaining Treatment retains records provided by doctors regarding patients subject to LST implementation. A total of 71,327 patients receiving LST were identified. We analyzed all nationally reported data between February 2018 and October 2019. Indicators such as the proportion of deaths, records for decision to terminate LST, implementation of LST records, and registration of Advance Statements on LST were analyzed.ResultsA total of 67,252 (94.3%) end-of life decisions were implemented in South Korea. The proportion of deaths preceded by a LST plan, non-self-determination LST decision, and any advance statements was 33.5% (23,891/71,327), 66.5% (47,436/71,327), and 1.2% (890/71,327), respectively. The logistic regression model revealed that self-determination to terminate LST was more frequent for men than for women and higher for those aged 30-69. Disability (odds ratio [OR], 0.59; 95% confidence interval [CI], 0.56 to 0.61), living in non-metropolitan areas (OR, 0.84; 95% CI, 0.81 to 0.86), and disease comorbidity was independently associated with a low level of self-determination.ConclusionAfter the implementation of the new LST Act, about a third of patients in end-of-life process made decisions regarding their medical LST. However, family members still play a major role in LST decisions where the patient's intention cannot be verified. Decisions related to LST are predominantly made when death is imminent. Thus, it is necessary to increase awareness of end-of-life LST decision-making among medical staff and the public.
| S-EPMC8053857 | biostudies-literature
Project description:BackgroundThe use of policies in medical treatment reimbursement decisions, in which only future patients are affected, prompts a moral dilemma: is there an ethical difference between withdrawing and withholding treatment?DesignThrough a preregistered behavioral experiment involving 1,067 participants, we tested variations in public attitudes concerning withdrawing and withholding treatments at both the bedside and policy levels.ResultsIn line with our first hypothesis, participants were more supportive of rationing decisions presented as withholding treatments compared with withdrawing treatments. Contrary to our second prestated hypothesis, participants were more supportive of decisions to withdraw treatment made at the bedside level compared with similar decisions made at the policy level.ImplicationsOur findings provide behavioral insights that help explain the common use of policies affecting only future patients in medical reimbursement decisions, despite normative concerns of such policies. In addition, our results may have implications for communication strategies when making decisions regarding treatment reimbursement.HighlightsWe explore public' attitudes toward withdrawing and withholding treatments and how the decision level (bedside or policy level) matters.People were more supportive of withholding medical treatment than of withdrawing equivalent treatment.People were more supportive of treatment withdrawal made at the bedside than at the policy level.Our findings help clarify why common-use policies, which impact only future patients in medical reimbursement decision, are implemented despite the normative concerns associted with thesepolicies.
| S-EPMC11346081 | biostudies-literature
Project description:ObjectivesTo develop a consensus framework that can guide the process of decision-making on continuing or limiting life-sustaining treatments in ICU patients, using evidence-based items, supported by caregivers, patients, and surrogate decision makers from multiple countries.DesignA three-round web-based international Delphi consensus study with a priori consensus definition was conducted with experts from 13 countries. Participants reviewed items of the decision-making process on a seven-point Likert scale or with open-ended questions. Questions concerned terminology, content, and timing of decision-making steps. The summarized results (including mean scores) and expert suggestions were presented in the subsequent round for review.SettingWeb-based surveys of international participants representing ICU physicians, nurses, former ICU patients, and surrogate decision makers.PatientsNot applicable.InterventionsNot applicable.Measurements and main resultsIn three rounds, respectively, 28, 28, and 27 (of 33 invited) physicians together with 12, 10, and seven (of 19 invited) nurses participated. Patients and surrogates were involved in round one and 12 of 27 responded. Caregivers were mostly working in university affiliated hospitals in Northern Europe. During the Delphi process, most items were modified in order to reach consensus. Seven items lacked consensus after three rounds. The final consensus framework comprises the content and timing of four elements; three elements focused on caregiver-surrogate communication (admission meeting, follow-up meeting, goals-of-care meeting); and one element (weekly time-out meeting) focused on assessing preferences, prognosis, and proportionality of ICU treatment among professionals.ConclusionsPhysicians, nurses, patients, and surrogates generated a consensus-based framework to guide the process of decision-making on continuing or limiting life-sustaining treatments in the ICU. Early, frequent, and scheduled family meetings combined with a repeated multidisciplinary time-out meeting may support decisions in relation to patient preferences, prognosis, and proportionality.
| S-EPMC7161724 | biostudies-literature
Project description:Background/objectivesPhysician Orders for Life-Sustaining Treatment (POLST) is recommended as a preferred practice for advance care planning with seriously ill patients. Decision aids can assist patients in advance care planning, but there are limited studies on their use for POLST decisions. We hypothesized that after viewing a POLST video, decision aid participants would demonstrate increased knowledge and satisfaction and decreased decisional conflict.DesignPre-and postintervention with no control group.Setting/participantsFifty community-dwelling adults aged 65 and older asked to complete a POLST based on a hypothetical condition.InterventionsVideo decision aid for Sections A and B of the POLST form.MeasurementsPre- and postintervention participant knowledge, decisional satisfaction, decisional conflict, and acceptability of video decision aid.ResultsUse of the video decision aid increased knowledge scores from 11.24 ± 2.77 to 14.32 ± 2.89, P < .001, improved decisional satisfaction 10.14 ± 3.73 to 8.70 ± 3.00, P = .001, and decreased decisional conflict 12 ± 9.42 to 8.15 ± 9.13, P < .001. All participants reported that they were comfortable using the video decision aid, that they would recommend it to others, and that it clarified POLST decisions.ConclusionsParticipants endorsed the use of a POLST video decision aid, which increased their knowledge of POLST form options and satisfaction with their decisions, and decreased their decisional conflict in POLST completion. This pilot study provides preliminary support for the use of video decision aids for POLST decision-making. Future research should evaluate a decision aid for the entire POLST form and identify patient preferences for implementing POLST decision aids into clinical practice.
| S-EPMC7720244 | biostudies-literature
Project description:Ethical evaluation of projects involving animal testing is mandatory within the EU and other countries. However, the evaluation process has been subject to criticism, e.g., that the committees are not balanced or democratic enough and that the utilitarian weighting of harm and benefit that is normally prescribed is difficult to carry out in practice. In this study, members of Swedish Animal Ethics Committees (AECs) completed a survey aiming to further investigate the decision-making process. We found that researchers and animal laypersons make significantly different ethical judgments, and hold disparate views on which ethical aspects are the most relevant. Researchers were significantly more content than laypersons with the functioning of the committees, indicating that the ethical model used suited their preferences better. We argue that in order to secure a democratic and proper ethical evaluation, the expectations of a scientific discourse must be acknowledged, while giving room for different viewpoints. Further, to fulfil the purpose of the project evaluations and meet public concern, the functions of the different AEC member categories need to be clarified. We suggest that one way of achieving a more thorough, balanced and inclusive ethical evaluation is to allow for more than one model of ethical reasoning.
| S-EPMC6210494 | biostudies-literature
Project description:Evidence from well-designed clinical trials may guide clinicians, reduce regional variation, and lead to improved outcomes. Many physicians choose to ignore evidence-based practice guidelines. Using unproven therapies outside of a randomized trial slows recruitment in clinical trials that could yield information on clinical and economic efficacy. Using acute stroke therapy as an illustration, we present an ethical hierarchy for therapeutic decision making during medical emergencies. First, physicians should offer standard care. If no standard care option exists, the physician should consider enrollment in a randomized clinical trial. If no trial is appropriate, the physician should consider a nonrandomized registry, or consensus-based guidelines. Finally, only after considering the first 3 options, the physician should use best judgment based on previous personal experience and any published case series or anecdotes. Given the paucity of quality randomized clinical trial data for most medical decisions, the "best judgment" option will be used most frequently. Nevertheless, such a hierarchy is needed because of the limited time during medical emergencies for consideration of general principles of clinical decision making. There should be general agreement in advance as to the hierarchy to follow in selecting treatment for critically ill patients. Were more clinicians to follow this hierarchy, and choose to participate in clinical trials, the generation of new knowledge would accelerate, yielding rigorous data supporting or refuting the efficacy and safety of new interventions more quickly, thus benefiting far more patients over time.
| S-EPMC2875330 | biostudies-literature