An Agenda for the Future

Author(s):  
Jessica W. Berg ◽  
Paul S. Appelbaum ◽  
Charles W. Lidz ◽  
Lisa S. Parker

The cornerstone of our approach to informed consent is the belief that the right of patients to authorize their own medical treatment, usually called the right to autonomy in decision making, is a moral value worth promoting. When medical care is required, patients should be met by physicians’ openness and willingness to present and discuss a variety of options, with the clear understanding that patients can play a role, if they desire, in shaping the ultimate decision. Our instinctive assumption that most patients would endorse this approach was confirmed by a large-scale study sponsored by the President’s Commission (1). Patients do want to know about and have the option of influencing the nature of their medical care, even if they may not always exercise that option (2). Our society’s deepseated traditions of respect for the integrity of the individual reinforce the importance of protecting patients’ interests in the medical decisionmaking process. Legal initiatives by themselves are insufficient to accomplish these results (see Chapter 7). Endless proposals to refine the legal mechanisms by which the doctrine of informed consent is enforced are not likely to achieve their goals. The legal rules governing informed consent operate at a level of generality that makes it difficult for physicians to take them into account in dealing with patients. Some surveys have found that physicians are completely ignorant of the operative standard for disclosure in their state (1), and others have found that even when physicians are aware of the standard, they do not apply it properly (3). More significantly, however, the medical setting seems relatively impervious to regulation in this area. Physicians and administrators have control over the structure of medical care and over the content of physician-patient interactions. Regardless of the law of informed consent, if the structure of hospital and office practice provides negligible opportunities for doctor-patient communication, little disclosure or shared decision making will occur. If physicians are resistant to the moral imperatives of informed consent, tinkering with standards of disclosure is unlikely to affect their behavior.

2012 ◽  
Vol 19 (5) ◽  
pp. 619-628 ◽  
Author(s):  
Cayetano Fernández-Sola ◽  
José Granero-Molina ◽  
Gabriel Aguilera Manrique ◽  
Adelaida María Castro-Sánchez ◽  
José Manuel Hernández-Padilla ◽  
...  

Preserving dignity during the dying process requires reviewing the roles of those involved in the treatment, care methods and decision-making. This article examines the participation and responsibility assigned to nurses regarding decision-making in the final stages of life, as laid out in the Rights to and Guarantee of Dignity for the Individual During the Process of Death Act. This text has been analysed on the levels of socio-cultural practice and discourse practice, using the critical discourse analysis methodology. The results show that, although the law is another result of the social trend of patient empowerment, the responsibility of the nurses is not recognised, and they are left out of the decision-making process in the final stages of life.


Author(s):  
Ben Qara Mustafa Aisha

This study aimed to identify the international, regional and even national efforts to protect the rights and privacy of the individual from the impact of informatics, and the extent to which it succeeded in achieving this. To achieve this, the researcher used the analytical method by explaining the new technical challenges to personal data and various legal mechanisms to protect this right. The research was based on an introduction, two papers and a conclusion. The first topic was entitled "What is the privacy of informatics and the dangers it faces in the digital age", while the second topic is devoted to international and regional efforts to protect information privacy. The results of the study showed that most of the legislations, especially the Arab ones, are not able to deal with violations of personal data, and concluded that new legal rules must be enacted to protect information privacy, based on established international principles in the field of informatics.


Author(s):  
G.V. Puchkova ◽  
L.P. Bohutska

The aim. The aim of the article is to study the implementation of the principle of autonomy in the medical law of Ukraine, to determine the compliance of the medical legislation of Ukraine with the specified principle in terms of the exercising of the human right to express wishes for the provision of medical care in the future in case if a patient cannot personally express such wishes. Materials and methods. The authors have studied the European standards and practice of the European Court of Human Rights regarding the right of a person to participate in the decision-making process on the provision of medical care, scientific works of specialists in the field of medical law, dedicated to the patient's right to informed consent to medical intervention, the right to refuse treatment and ethical standards of legal regulation of relations with the participation of patients using the formal-logical method, the method of structural analysis, comparative method and legal modeling. Results. The study has found that there are gaps in the normative regulation of the patient's right to participate in the decision-making process in the provision of medical care, which carries a potential danger of violating the right to respect for private and family life, guaranteed by the Convention for the Protection of Human Rights and Fundamental Freedoms. Conclusions. It is proposed to eliminate these gaps by ratifying the Oviedo Convention by Ukraine, implementation of the institution of previously expressed wishes in the national legislation, determining the mechanism for drawing up, changing and revoking previously expressed medical directives, the designation an authorized person in case a patient is unable to independently express his or her own wishes for the provision of medical care taking into account the European experience, cultural characteristics of Ukrainian society, the state of functioning of the institutional and legal systems and the level of development of biology and medicine.


2011 ◽  
Vol 60 (4) ◽  
Author(s):  
Elena Ferioli ◽  
Mario Picozzi

La richiesta di istituire biobanche oggi diventa sempre più impellente. Una biobanca è una struttura dove si raccolgono per un tempo lungo materiale biologico e dati di natura biomedica correlati al campione, che può provenire sia da pazienti che da cittadini. Da un lato si riconosce il ruolo che le biobanche possono avere sia nell’acquisire nuove conoscenze sia nel favorire nuovi trattamenti di diagnosi e cura, dall’altro è necessario riflettere sulle delicate e complesse questioni giuridiche ed etiche ad esse sottese. Il presente contributo, dopo aver fatto chiarezza sulla definizione e sui requisiti tecnici necessari per l’istituzione di una biobanca, si sofferma ad analizzare le principali questioni etico-giuridiche: a chi appartiene il tessuto e chi beneficia dei risultati ottenuti? Quale consenso informato è adeguato per protocolli sperimentali non prevedibili al momento del prelievo del tessuto? Come può essere garantita la riservatezza dei dati, anche in funzione dell’analisi genetica? Gli argomenti vengono analizzati a partire dalla letteratura internazionale, mostrando le diverse posizioni. In tema di proprietà del tessuto e di proprietà intellettuale dei risultati si evidenzia come sta emergendo una concezione solidaristica, in cui materiale e informazioni sono da considerarsi risorse a disposizione dell’intera collettività, che ne affida alla biobanca la gestione. Il modello di consenso informato che sembra prevalere è quello definito “ampliato”, di cui si evidenziano pregi e difetti, nell’ottica di un bilanciamento tra autonomia del soggetto, interesse della collettività ed esigenze della ricerca. La questione della riservatezza impone di riflettere sia sul diritto alla privacy sia sulla possibilità di utilizzo del dato per finalità di ricerca. Data la complessità delle questioni emerse, si ritiene che necessariamente la fiducia del paziente/cittadino verso la comunità scientifica giochi un ruolo fondamentale. Il Comitato di etica, a cui vanno assicurate competenze e risorse adeguate, diventa lo strumento di garanzia indispensabile per una gestione eticamente accettabile della biobanca. ---------- Today the request to create biobanks is more and more urgent. A biobank is a structure where biological specimens and related biomedical data, obtained from patients and/or citizens , are stored over time. On one hand, we acknowledge the role that biobanks may have in acquiring new knowledge and fostering new treatments for diagnosis and therapy, on the other we need to reflect upon the delicate and complex legal and ethical issues that biobanks rise. This paper, after defining the concept of biobank and the technical requirements needed to establish one, analyzes some major ethical and legal issues: Who owns the tissues and who can benefit from potential results? Which kind of informed consent is the most appropriate for experimental protocols not yet predictable at the time of tissue collection? How can data confidentiality be guaranteed also in relation to genetic analysis? The topics are analyzed with reference to the international literature, comparing different perspectives. Regarding the ownership of biological samples and the intellectual property rights of the potential research outputs based on the data, the recent literature introduces a new concept of solidarity which consider all samples and information at full disposal of the entire community and which indicates the biobank as the manager of the archive. The model of “broad” informed consent seems to prevail: we indicate its points of strength and weakness, considering a necessary balance among the individual autonomy, the collective interest and the research requirements. Finally, regarding the confidentiality of all data, we need to reflect upon the right to privacy along with the possibility to use the available data for research purpose. Considering the complexity of these issues, we believe that the patient’s trust towards the scientific community is the main matter. The Ethics Committee, to whom adequate resources and expertise must be granted, becomes the assurer entity for an ethically acceptable management of a biobank.


Author(s):  
Anna Rathmell

In contemporary medicine, the traditional paternalistic model of healthcare has largely been replaced with a model which focuses on patient autonomy and the right of patients to have as much control as possible over decisions relating to their medical care. In English law, this has led to the concept of informed consent and the right of patients to withdraw their consent at any time, even if they have previously given consent or signed a consent form.


Author(s):  
Jessica W. Berg ◽  
Paul S. Appelbaum ◽  
Charles W. Lidz ◽  
Lisa S. Parker

In the preceding chapter we spoke of the requirement for informed consent in absolute terms, as something that was an invariable component of medical decision making. Over the years, courts have come to recognize that there are a number of situations in which physicians are permitted to render treatment without patients’ informed consent. Even under the earlier simple consent requirement, consent to treatment was not required in all situations. There are different kinds of situations in which requiring disclosure and obtaining consent could be detrimental to the patient, such as in an emergency or when the disclosure itself would harm the patient, and therefore in these situations informed consent is not required. Patients may also waive, or give up, the right to be informed and/or to consent. Here the concern is not with promoting health values but with promoting autonomy. Informed consent may also be dispensed with in a fourth set of cases, those of legally required treatment, in which the harm from requiring informed consent is not necessarily to the patient (or the patient alone) but to other important societal interests (e.g., civil commitment of the dangerous mentally ill—see Chapter 11—or forced treatment of patients with infectious disease). In addition, informed consent requirements are modified when a patient is incompetent (see Chapter 5). Each of these exceptions contains the potential for undermining the values sought to be implemented by the informed consent doctrine: self-determination and informed decision making. Exceptions that are too broadly defined and applied are a threat to these values. On the other hand, these exceptions are an important vehicle for the interjection into the decisionmaking process of another set of values, society’s interest in promoting the health of individuals. When judiciously defined and applied, the exceptions accord health-related values their due. However, the exceptions can be, and sometimes have been, defined so broadly as to dilute, if not dissolve, the fundamental duties imposed by the doctrine and to undermine its essential purpose of assuring patient participation in medical decision making (1).


PEDIATRICS ◽  
1975 ◽  
Vol 55 (3) ◽  
pp. 370-370
Author(s):  
Susan Andreasen

Recently, while attending a course concerned with Humanities in Medicine I had the pleasure of meeting the 10-year-old daughter of one of the participants. The young lady was party to several of our informal discussions on informed consent and children. She was pleased to hear that a Pediatric Bill of Rights existed but she was most displeased when she read the contents. For the Bill of Rights proposed by the National Association of Childrens Hospitals and Related Institutions1 supports the right of minors to obtain medical care without parental consent if a conflict exists. Susan, objected to this being called the "Pediatric" Bill of Rights for it had little to do with what children would propose. Consequently, she composed a true Pediatric Bill of Rights as follows: 1. Any person regardless of age has the right to refuse pedeatric care. 2. Any person regardless of age has the right to pick there own pedeatrision, if there a girl they can pick a girl, if if there a boy they can pick a boy. 3. Any person regardless of age has the right to not take there medicen if they dont want to. 4. Any person regardless of age has the right not to wear those paperthings at the doctors office. 5. Any person regardless of age has the right not to get weighed at the doctors office.


2017 ◽  
Vol 86 (3) ◽  
pp. 240
Author(s):  
Ievgen Tsema ◽  
Igor Khomenko ◽  
Vitalii Shapovalov ◽  
Georgii Makarov ◽  
Roman Palytsia ◽  
...  

This article presents a clinical case of successful multilevel treatment the combined gunshot wound of liver with the mechanism of hydrodynamic shock using «damage control» tactic. The patient received a combined thoraco‑abdominal injured as a result of warfare on the east of Ukraine. The blind fragmental penetrating trauma of the chest cavity led to the rupture of the right dome of diaphragm and liver (S3–S6) by the mechanism of hydrodynamic kick (fragments the wreckage and input/output openings in the abdominal cavity were not found). The «damage control» tactic was implemented as follows. On the second level of medical care the rupture of the liver parenchyma eliminated by repeated firmwares with omentopexy. The post‑traumatic period proceeded with the several consecutive complications: cutting the liver sutures, the arrosive bleeding from the right hepatic artery and the irreversible ischemia of the liver S5-S6. These complications were liquidated gradually on the IV level of medical care by the transpupillary choledochal stenting, vascular suture and the imposition of a typical anatomical resection of liver S5–6. Successful treatment of patients with the severe fragmental gunshot thoraco‑abdominal injuries should be based on a clear understanding of the stages of traumatic disease and expected complications of parallel conduct medical evacuation, using «damage control» tactic on the all levels of medical care.


1987 ◽  
Vol 16 (2) ◽  
pp. 127-133 ◽  
Author(s):  
Barry Wisdom ◽  
Dennis Patzig

The success of merit systems is closely linked to the establishment of key expectations in the minds of employees concerning the relationship between pay and performance. Results of a national survey suggest that different expectations are being formed in the public versus the private sectors. The role organizational climate plays in this finding and in the individual employee's decision making process regarding effort expended at work is modeled and discussed. Suggestions for fostering merit success are also addressed.


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