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Seeking Worldwide Professional Consensus on the Principles of End-of-Life Care for the Critically Ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) Study
Great differences in end-of-life practices in treating the critically ill around the world warrant agreement regarding the major ethical principles. This analysis determines the extent of worldwide consensus for end-of-life practices, delineates where there is and is not consensus, and analyzes reasons for lack of consensus. Critical care societies worldwide were invited to participate. Country coordinators were identified and draft statements were developed for major end-of-life issues and translated into six languages. Multidisciplinary responses using a web-based survey assessed agreement or disagreement with definitions and statements linked to anonymous demographic information. Consensus was prospectively defined as >80% agreement. Definitions and statements not obtaining consensus were revised based on comments of respondents, and then translated and redistributed. Of the initial 1,283 responses from 32 countries, consensus was found for 66 (81%) of the 81 definitions and statements; 26 (32%) had >90% agreement. With 83 additional responses to the original questionnaire (1,366 total) and 604 responses to the revised statements, consensus could be obtained for another 11 of the 15 statements. Consensus was obtained for informed consent, withholding and withdrawing life-sustaining treatment, legal requirements, intensive care unit therapies, cardiopulmonary resuscitation, shared decision making, medical and nursing consensus, brain death, and palliative care. Consensus was obtained for 77 of 81 (95%) statements. Worldwide consensus could be developed for the majority of definitions and statements about end-of-life practices. Statements achieving consensus provide standards of practice for end-of-life care; statements without consensus identify important areas for future research.
Journal Article
An Ethics Framework for a Learning Health Care System: A Departure from Traditional Research Ethics and Clinical Ethics
Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No such framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion.
Journal Article
Missed Opportunities during Family Conferences about End-of-Life Care in the Intensive Care Unit
Improved communication with family members of critically ill patients can decrease the prolongation of dying in the intensive care unit (ICU), but few data exist to guide the conduct of this communication.
Our objective was to identify missed opportunities for physicians to provide support for or information to family during family conferences.
We identified ICU family conferences in four hospitals that included discussions about withdrawing life support or delivery of bad news. Fifty-one conferences were audiotaped, including 214 family members. Thirty-six physicians led the conferences and some physicians led more than one. We used qualitative methods to identify and categorize missed opportunities, defined as an occurrence when the physician had an opportunity to provide support or information to the family and did not.
Fifteen family conferences (29%) had missed opportunities identified. These fell into three categories: opportunities to listen and respond to family; opportunities to acknowledge and address emotions; and opportunities to pursue key principles of medical ethics and palliative care, including exploration of patient preferences, explanation of surrogate decision making, and affirmation of nonabandonment. The most commonly missed opportunities were those to listen and respond, but examples from other categories suggest value in being aware of these opportunities.
Identification of missed opportunities during ICU family conferences provides suggestions for improving communication during these conferences. Future studies are needed to demonstrate whether addressing these opportunities will improve quality of care.
Journal Article
Public perceptions of artificial intelligence in healthcare: ethical concerns and opportunities for patient-centered care
Background
In an effort to improve the quality of medical care, the philosophy of patient-centered care has become integrated into almost every aspect of the medical community. Despite its widespread acceptance, among patients and practitioners, there are concerns that rapid advancements in artificial intelligence may threaten elements of patient-centered care, such as personal relationships with care providers and patient-driven choices. This study explores the extent to which patients are confident in and comfortable with the use of these technologies when it comes to their own individual care and identifies areas that may align with or threaten elements of patient-centered care.
Methods
An exploratory, mixed-method approach was used to analyze survey data from 600 US-based adults in the State of Florida. The survey was administered through a leading market research provider (August 10–21, 2023), and responses were collected to be representative of the state’s population based on age, gender, race/ethnicity, and political affiliation.
Results
Respondents were more comfortable with the use of AI in health-related tasks that were not associated with doctor-patient relationships, such as scheduling patient appointments or follow-ups (84.2%). Fear of losing the ‘human touch’ associated with doctors was a common theme within qualitative coding, suggesting a potential conflict between the implementation of AI and patient-centered care. In addition, decision self-efficacy was associated with higher levels of comfort with AI, but there were also concerns about losing decision-making control, workforce changes, and cost concerns. A small majority of participants mentioned that AI could be useful for doctors and lead to more equitable care but only when used within limits.
Conclusion
The application of AI in medical care is rapidly advancing, but oversight, regulation, and guidance addressing critical aspects of patient-centered care are lacking. While there is no evidence that AI will undermine patient-physician relationships at this time, there is concern on the part of patients regarding the application of AI within medical care and specifically as it relates to their interaction with physicians. Medical guidance on incorporating AI while adhering to the principles of patient-centered care is needed to clarify how AI will augment medical care.
Journal Article
Finishing our story : preparing for the end of life
\"Death is the destiny we all share, and this will not change. Yet the way we die, which had remained the same for many generations, has changed drastically in a relatively short time for those in developed countries with access to healthcare. For generations, if people were lucky enough to reach old age, not having died in infancy or childhood, in childbirth, in war, or by accident, they would take to bed, surrounded by loved ones who cared for them, and fade into death. Most likely, they would have seen their parents and grandparents die the same way, and so this manner of dying would be familiar: it was part of the natural cycle of life. Now less than 25 per cent of Americans die at home, having reached much older ages than people would have dreamed of in past generations, often after surviving many illnesses and even diseases that would have been terminal for their grandparents. We are fortunate to live (and die) today, supported by myriad scientific, medical, and technological advancements, however we also face new problems as a result of the new way in which we die. We can no longer anticipate a peaceful waning at home with family. We know our lives will likely end in hospitals likely after we have endured grueling treatments to prolong life. We have to decide what decisions we want our loved ones, or care-givers, to make when we cannot choose for ourselves. We have to think about whether in any circumstances we would seek physician-assisted death. We know we face other questions as well, but we may not even know where to start. In the face of these decisions, we can feel daunted and afraid. The best remedy is information and planning. In this book, Gregory Eastwood - a physician who has cared for dying patients, served as an ethics consultant, and taught end of life issues to medical and other health profession students - draws from his substantial experience with patients and families to provide the information that will help us think clearly about the choices and issues we will face at the end of our own lives, and when faced with the deaths of our loved ones. With sensitivity and profound insight, Eastwood guides us through all the important questions about death and dying in straightforward, clear language, enhanced by real-life stories. Throughout, he shows us how we can take ownership of the way we want to die, when we must die, and feel more in control as death approaches. \"-- Provided by publisher.
Book
End-of-life care in Moroccan ICUs: ethical challenges, practices, and perspectives of intensivists
Background
End-of-life (EOL) care practices, particularly the withholding and withdrawing (W/W) of life-sustaining treatments (LSTs), remain underexplored in North Africa. This study examined factors that influence EOL practices in Morocco.
Methods
A nationwide online survey was conducted over one month (from July to August 2023) among Moroccan intensivists, assessing their perspectives on W/W LSTs, decision-making processes, and influencing factors, including ethical, cultural, and religious considerations. Univariable analyses were performed to screen for potential associations, followed by multivariable logistic regression to identify factors independently associated with W/W decisions.
Results
Of 351 invited intensivists, 151 completed the survey, yielding a 41% response rate. The mean age of respondents was 47 ± 9 years, and 84% were male. Most interpreted EOL care as providing palliative care (74%) or ensuring a dignified death (59%), while only 23% explicitly associated it with the cessation of life-sustaining treatment. Nearly 40% reported never having made withholding or withdrawing (W/W) decisions, and 88% made fewer than one such decision per week. While 59% considered withholding LSTs ethically acceptable, only 5% supported both withholding and withdrawing. The most frequently cited barriers were the absence of a legal framework (75%), sociocultural constraints (44%), and discomfort discussing EOL issues with families (58%). Patient wishes were considered in fewer than half of cases, whereas family preferences predominated in 66%. Documentation of W/W decisions was uncommon (27%), and formal institutional protocols were largely absent (94.5%). In multivariable analysis, practicing in a public hospital (odds ratio [OR] = 3.16,
p
= 0.005) and believing that Islam permits W/W decisions (OR = 3.49,
p
= 0.006) were independently associated with a higher likelihood of making such decisions.
Conclusion
Moroccan intensivists face major ethical and practical challenges in EOL care, including legal ambiguity, lack of protocols, limited patient involvement, and difficulty communicating with families. The findings highlight the urgent need for legislative reforms, standardized protocols, and improved education to support ethical, culturally sensitive, and patient-centred EOL practices.
Journal Article