Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of the English Mental Capacity Act 2005 and using (...) time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness. The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process. (shrink)

BackgroundHealthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity.MethodsWe conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including (...) support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death.ResultsSupport for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics.ConclusionsFindings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered. (shrink)

Despite significant advances in medicine, death remains a certainty for every living human being. End-of-life care decision-making is not made easier in a multi-cultural and multi-religious society like Malaysia. As such, planning for one's death by making Advance Decisions can be immensely valuable as it can help healthcare providers in Malaysia to understand better the preferences and wishes of their patients. However, compared to other countries, there is currently no specific legislation on any form of Advance Decisions in Malaysia despite (...) many doctors voicing a need for them. Unlike the Mental Capacity Act 2005 in the UK, the Malaysian Mental Health Act 2001 does not cover all instances of incapacity and only applies to those who suffer from a mental disorder as defined in the Act. In the absence of legislation, one could look to ethical guidelines, especially from the Malaysian Medical Council, but find that this can sometimes be problematic. It is argued that a concerted effort involving all relevant parties is required to develop a pragmatic and viable Advance Decisions frameworkl in Malaysia. (shrink)

Background Physicians play a fundamental role in the care of patients at the end of life that includes knowing how to accompany patients, alleviate their suffering and inform them about their situation. However, in reality, doctors are part of this society that is reticent to face death and lack the proper education to manage it in their clinical practice. The objective of this study was to explore the residents’ concepts of death and related aspects, their reactions and actions in situations (...) pertaining to death in their practice, and their perceptions about existing and necessary training conditions. Methods A qualitative approach was used to examine these points in depth based on interviews conducted with seven oncology residents. Results Participants do not have a clear concept of death and, although it is seen as a common phenomenon, they consider it an enemy to beat. The situations to which respondents react more frequently with frustration and sadness after the death of patients were when they felt emotionally involved, if they identify with the patient, in cases of pediatric patients and with patients who refuse treatment. To deal with death, participants raise barriers and attempt to become insensitive. Although residents in this study recognize the importance of training to learn how to better deal with death, it seems they are not fully invested in reaching more of it. Conclusions Participants face death in a daily basis without the necessary training, which appears to impact them more than they are willing to accept. They do not achieve their goals managing situations regarding death as well as they assume they do. Despite recognizing the need of more training and support for better coping with death, they prefer to continue to learn from their experience. Trial registration Not applicable. (shrink)

ObjectiveTo increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.SettingThree tertiary hospitals in metropolitan Brisbane, Australia.DesignQualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic (...) analysis.ResultsDoctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.ConclusionsDoctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making. (shrink)

Do not attempt cardiopulmonary resuscitation decisions (DNACPR) are considered good medical practice for those dying at the end of natural life. They avoid intrusive and inappropriate intervention. Historically, informing patients of these decisions was discretionary to avoid undue distress. Recent legal rulings have altered clinical guidance: disclosure is now all but obligatory. The basis for these legal judgments was respect for the patient’s autonomy as an expression of their human rights. Through critical analysis, this paper explores other bioethical considerations and (...) the potential harms if they are ignored. Arguably, disclosure of DNACPR status on its own will do little to improve patient experience. A focus on good communication with those identified as approaching end-of-life will facilitate personalized care. Discussions around DNACPR may still occur, but only if likely to be beneficial and at a patient-appropriate pace (not dictated by the need to activate the decision). (shrink)

The main goal of intensive care medicine is helping patients survive acute threats to their lives, while preserving and restoring life quality. Because of medical advancements, it is now possible to sustain life to an extent that would previously have been difficult to imagine. However, the goals of medicine are not to preserve organ function or physiological activity but to treat and improve the health of a person as a whole. When dealing with medical futilities, physicians and other members of (...) the care team should be aware of some ethical principles. Knowing these principles could make decision-making easier, especially in cases where legal guidelines are insufficient or lacking. Understanding of these principles can relieve the pressure that healthcare professionals feel when they have to deal with medical futility. Efforts should be made to promote an ethics of care, which means caring for patients even after further invasive treatment has been deemed to be futile. Treatments that improve patients’ comfort and minimize suffering of both patients and their families are equally as important as those aimed at saving patients’ lives. (shrink)