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The increasing complexity of healthcare creates numerous ethical challenges in patient care and in institutional functions and policies. During the past several decades, clinical ethics consultation services and institutional ethics committees have been developed to assist patients, medical professionals, and institutions in addressing ethical challenges. This chapter discusses the nature of clinical ethics consultation and the training of ethics consultants and committees. The authors review the experience at their institution (Mayo Clinic). Finally, the value of ethics consultation, as described in the medical literature, is reviewed. IntroductionLife, health, illness, disability, and death are at the top of human concerns, and the focus of healthcare. These concerns are fundamental components of each person’s worldview. As such, healthcare is an ethically rich endeavor, so much so that the concept of the profession of medicine is inconceivable without a clear ethical framework. Yet, each individual patient and professional holds opinions regarding the larger issues based upon factual knowledge, subjective experiences, and varying philosophic and religious presuppositions. Differences in ethical conclusions about the appropriateness of a given approach to medical intervention are therefore not uncommon, particularly in the increasingly diverse natures of our society. To complicate things further, the rapid development of powerful biotechnologies that challenge existing paradigms and are increasingly more expensive and demanding upon limited resources introduces challenges to many worldviews requiring new reflection and ethical innovation. These challenges arise at all levels of the healthcare process – from the bedside to the boardroom – and at all levels of the healthcare organization. Two developments of the last 50 years have emerged to help address these ethical questions and challenges: clinical ethics consultation (EC) and institutional ethics committees. EC focuses at the bedside, active case level, whereas institutional ethics committees focus on the institutional, practice, and policy level. This chapter will describe the goals and possible structures for EC and committees, the training and institutional resources required for these activities, a review of reported experience with EC, and a review of the published experience demonstrating the value of EC. It is important to state that the activities and structures described in this chapter are separate from Institutional Review Boards (IRBs), which focus entirely on research ethics and performance. IRBs function independently of other administrative structures of an institution and are governed by and answerable to federal authorities. EC and ethics committees deal with ethical questions beyond the purview of the IRB. Section snippetsClinical ECClinical EC (CEC), or simply EC, is defined by the American Society for Bioethics and Humanities (ASBH) as “a set of services provided by an individual or group in response to questions from patients, families, surrogates, healthcare professionals, or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in health care” (ASBH, 2011). Notably, the Joint Commission (2009) requires healthcare institutions to have some methodology for Ethics committeesEthics committees may provide support for, and/or may directly perform, clinical EC, as noted above. Ethics committees, however, usually perform other functions as well. These include establishing institutional policy and procedural guidelines for aspects of care with substantial ethical components. Examples include practices at the beginning of life, end-of-life care, institutional policy on resource allocation, and conflicts of conscience. The ethics committee, therefore, provides analysis Maintenance of ethics committees and servicesBoth EC services and ethics committees have requirements to function effectively, including knowledgeable personnel skilled in communication and mediation, adequate time to perform the respective services, and institutional support. The reported experience with ethics consultation in patients with neurologic diseasesA review of an institution’s ethics experience can provide valuable information regarding recurrent ethical issues and challenges within the institution. For example, a review of the initial 255 ECs at our institution showed that, despite advances in technology and pharmacotherapy, ethical concerns tended to focus on longstanding ethical challenges, including communication challenges, family members in conflict with each other or with the care team, or questions regarding futility or goals of Value of ethics consultationThe Joint Commission requires that healthcare institutions provide access to EC. This requirement suggests that EC is valuable to patients, providers, and institutions. How so? Webster defines “value” as “fair return or equivalent in goods, services, or money for something exchanged” (Merriam-Webster Online Dictionary, 2012). Given increasing healthcare costs and shrinking resources, policy makers, administrators, and payers demand that expenditures be justified through measurable results (Fox ConclusionEC and ethics committees are valuable assets for clinicians, patients, families, and institutions to deal with the increasingly complex environment and technologies of healthcare, and help achieve the best care for patients possible. As with other fields of medicine, clinical ethics has its own body of specialized and multidisciplinary knowledge, and ethics consultants must rigorously and continuously train to achieve and maintain competency. Medical institutions should commit necessary References (44)
Of goals and goods and floundering about: a dissensus report on clinical ethics consultationHEC Forum(2009) Ethics consultations in stroke and neurological disease: a 7-year retrospective reviewNeurocrit Care(2008) Catholic Health Care in the United States – 2012(2012) Proactive ethics consultation in the ICU: a comparison of value perceived by healthcare professionals and recipientsJ Clin Ethics(2007) Evaluating the outcomes of ethics consultationJ Clin Ethics(2006) A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stayCrit Care Med(1998) Charting the future: credentialing, privileging, quality, and evaluation in clinical ethics consultationHastings Cent Rep(2009) A national survey of US internists’ experiences with ethical dilemmas and ethics consultationJ Gen Intern Med(2004) The economics of dying. The illusion of cost savings at the end of lifeN Engl J Med(1994) Core competencies for health care ethics consultants: in search of professional status in a post-modern worldHEC Forum(2011) Evaluating outcomes in ethics consultation researchJ Clin Ethics(1996) 2020, BMC Medical Ethics 2020, Journal of Medical Ethics 2015, BMC Medical Ethics Research article Handbook of Clinical Neurology, Volume 118, 2013, pp. 133-139 Show abstractNavigate Down Patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Therefore, symptom management and palliative care approaches should be included from the beginning of the illness. Palliative care aims at improving a patient’s quality of life by alleviating suffering due to physical, psychosocial, and spiritual factors. Since no curative and only limited life-prolonging treatment options are available for most chronic neurologic disorders, a palliative care approach can help to create a treatment plan that considers all aspects of the disease. We have provided palliative care approaches for the most common neurodegenerative disorders like dementia, multiple sclerosis, Parkinson’s disease, and amyotrophic lateral sclerosis. A palliative approach to neurologic disorders does not simply mean limiting treatment and focusing on pain. Instead, the whole unit of care, consisting of the patient, relatives, and caregivers, should be perceived with all their needs. Research article Handbook of Clinical Neurology, Volume 118, 2013, pp. 265-276 Show abstractNavigate Down The field of neurogenetics is moving so rapidly that new discoveries are announced almost weekly. The tools available for the diagnosis of neurogenetic disorders have become powerful and complex, and raise new ethical dilemmas that did not exist just a few years ago. In addition to previous concerns about presymptomatic genetic testing and carrier testing, the widening availability of next-generation sequencing raises concerns about the reporting of incidental findings of unclear significance. Genetically targeted therapies have now been proven to be efficacious for a few neurogenetic diseases, and it is likely that gene therapies and cell-based therapies will soon be applied to other neurologic disorders. These therapies are generally quite expensive compared to other treatments. Given the cost constraints that will be needed in the healthcare system in the United States and other countries, and the likelihood that new genetically targeted therapies will be introduced, society will face difficult questions regarding its obligations to fund expensive therapies both for large populations and for small numbers of patients with rare diseases. Potential conflicts of interest involving both individuals and institutions will need ongoing vigilance. Scientific advances will continue to raise consequential ethical questions in the field of neurogenetics. Research article Handbook of Clinical Neurology, Volume 118, 2013, pp. 225-231 Show abstractNavigate Down Acute and chronic peripheral and/or central disorders of the voluntary motor system can produce profound paresis or paralysis, at times with ophthalmoplegia, while preserving consciousness and language function. Although at times appearing to be unconscious, these patients are awake and alert but unable to communicate, manipulate their environment, or participate in medical decision-making. Clinicians caring for these patients are ethically tasked with recognizing this clinical reality, enacting measures to facilitate communication, and abiding by ethical and legal principles that support autonomous patient-centered decision-making. This chapter reviews the various disorders that may cause this state while using three exemplary disorders – locked-in syndrome, caused by an anterior pontine lesion; high cervical spinal cord lesion; and amyotrophic lateral sclerosis – to discuss the management of these patients. Research article Care of the dying neurologic patientHandbook of Clinical Neurology, Volume 118, 2013, pp. 141-145 Show abstractNavigate Down The causes of death in patients with neurodegenerative diseases are important information for patients and relatives because misleading information causes additional burdens. Early and frank discussion about disease progression, the causes of death, and end-of-life decisions might support the patient’s and family’s acceptance of the dying process and also helps physicians to frame treatment goals more explicitly. These goals include the place of death as well as medication administered at the end of life. The Liverpool Care Pathway provides a useful tool to standardize the care at the end of life that contributes to individual decisions and care plans. The prescription of medication at the end of life in various neurodegenerative diseases differs from treatment during the earlier phases of the diseases, not only because of swallowing difficulties but also in terms of symptom control. Research article The ethics of surgically invasive neuroscience researchHandbook of Clinical Neurology, Volume 118, 2013, pp. 315-321 Show abstractNavigate Down A clear understanding of distinctions and definitions is necessary before determining which types of surgically invasive neuroscience research should be permitted and how the experimental protocols can properly be undertaken. A failure to clarify the ethical distinctions in invasive neuroscience research hinders attempts at ethical analysis and guidance. At least four main distinctions need to be addressed: “invasiveness” as an important moral characteristic; special brain–mind-related risks; research participant selection; and ideologic interpretation of human function. Harm and not invasiveness is the metric by which to measure the ethical permissibility of research. Because of a class of harms to minds and selves, special attention should be paid to value considerations. These considerations need to be addressed by researchers, funders, and review boards to create proper safeguards from conception of research through final application of results. Research article Neuroethical issues in clinical neuroscience researchHandbook of Clinical Neurology, Volume 118, 2013, pp. 335-343 Show abstractNavigate Down In this chapter, we use the special features of neuroimaging to illustrate research ethics issues for the clinical neurologic sciences, and focus on one particularly compelling case: studies involving first-episode schizophrenic treatment-naïve individuals (FESTNIs) (). FESTNIs are scanned prior to the administration of medication in order to control for the confounding effects of treatment. By concentrating on this program of research, we capture the distinctive ethical challenges associated with neuroimaging research overall, and foreground the issues particular to neuroimaging research involving FESTNIs that have yet to receive sufficient attention in the literature. We highlight assessment of risks and burdens, including risks associated with treatment delays and incidental findings; assessment of benefit, including direct benefit, social value, and scientific quality; subject selection; justice questions related to responsiveness and poststudy access; and, finally, issues related to consent and capacity. Who should be members of ethics committee?* In accordance with NHMRC National Statement on Ethical Conduct in Human Research (2007), the minimum membership of a Human Research Ethics Committee is eight members comprises: 1) a chairperson; 2) a layman; 3) a laywoman, 4) a person with knowledge of, and current experience in, the professional care, counselling or ...
What is the main role of an ethics committee?Ethics committees review research proposals involving human participants and their data to ensure that they agree with local and international ethical guidelines. They also monitor studies once they begin and—if necessary—may take part in follow-up actions after the end of the research.
What are the 3 functions of the ethics committee?The three primary functions commonly cited for an ethics committee are education, policy development and review, and case analysis. Each of these functions are important in the contribution of an ethics committee to end-of-life decision-making.
What is an ethics committee mcq?2. What is an ethics committee? People who like to talk a lot. A group of people who think about hypothetical research. A group of experienced people who will consider a research proposal and the degree to which ethical issues have been considered appropriately.
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