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Public health and ethics: happily conjoined twins
Contents:


  1. Case study: alcohol and tobacco
  2. Health Management, Ethics and Research Module: 7. Principles of Healthcare Ethics
  3. Justice Is the Missing Link in One Health: Results of a Mixed Methods Study in an Urban City State
  4. Study Session 7 Principles of Healthcare Ethics
  5. Public Health Ethics: Global Cases, Practice, and Context | SpringerLink

Articles were chosen for inclusion in the bibliography with the aim of representing a range of work in the field rather than an exhaustive list of all relevant publications. Thus, following a scan of the retrieved articles, select publications were chosen to illustrate the main theories, principles, and frameworks discussed. Emphasis was placed on key publications frequently cited by others. A selection of recently published work was also included to illustrate current thinking in the field. Arah OA.

Case study: alcohol and tobacco

On the relationship between individual and population health. Med Health Care Philos ;12 3 This article challenges the distinction between individual and population health, which the author argues is inefficient and potentially unethical. Such discussion is important because conceptualizations of health impact how it is studied and addressed.

The principle of equity is raised as a potential concern associated with viewing population health as simply the aggregation of individuals. The interconnection between individual and population health is framed as an interaction between absolutist and relativist notions of health. Of note, this article potentially questions the need to develop a separate framework for population health ethics. Arah urges careful consideration of the aims of separating public health ethics from mainstream bioethics given the interwoven nature of individual and population health.

A relational account of public health ethics. Public Health Ethics ;1 3 Baylis et al. Public health ethics needs to go beyond identifying tensions between individual and community interests, to recognizing the complex ways in which individuals and communities are inseparable. The authors suggest core values for population health ethics that draw on two strands of theoretical work: 1 relational personhood , which views individuals not as discrete beings but as interconnected with and constituted within social, historical, and political contexts.

This relational view emphasizes relational autonomy and social justice ; 2 relational solidarity , which encourages consideration of responsibility for ourselves and our actions, a willingness to be held accountable for others, especially the most disadvantaged, and an awareness of mutual vulnerability and interdependence.

Black M, Mooney G. Equity in health care from a communitarian standpoint.

Health Management, Ethics and Research Module: 7. Principles of Healthcare Ethics

Health Care Anal ;10 2 This article argues that in order to achieve equity in health, communitarian ideals that acknowledge, respect, and foster bonds that unite communities need to be recognized and harnessed. The authors present two alternative conceptualizations of autonomy that emerge from such a view: 1 social autonomy — those who have power to assist others should help support them to alleviate disadvantage and promote autonomy.

Such a form of autonomy has a circular process whereby communities are necessary to help promote autonomy, and autonomous individuals are necessary to promote these kinds of communities; 2 community autonomy — providing communities with power and choice through involvement in decision-making. The authors argue that this form of autonomy benefits both individuals and communities through the positive impacts of self-governance, and the increased bonds and connectedness formed among community members.

Data ethics in healthcare, medicine, and public health

Braveman P, Gruskin S. Defining equity in health. J Epidemiol Community Health ;57 4 Braveman and Gruskin suggest a definition of equity intended to assist with its operationalization and measurement. This discussion builds on the previous work of Whitehead ; see below based on accumulated experience with the concept.

Equity is closely linked to distributive justice and to human rights. The authors argue that a precise definition of equity is needed because the concepts of social justice and fairness with which it is associated can be variously interpreted. Thus, they propose that equity in health is "the absence of systematic disparities in health or its social determinants between more and less disadvantaged groups". The term social advantage is used to denote attributes e. Buchanan DR. Autonomy, paternalism, and justice: ethical priorities in public health.

Am J Public Health ;98 1 In this article, Buchanan critiques the significant focus of public health ethics on paternalism and on identifying justificatory conditions for interventions that restrict individual autonomy. This focus neglects the epidemiological transition from infectious to chronic disease and the associated moral difference between controlling disease agents and controlling host behaviours. Instead, public health ethics should be grounded in theories of justice through which autonomy can be promoted rather than reduced. Autonomy is understood in the Kantian sense in that it integrates both freedom and responsibility.

Thus, autonomy is required so that individuals may freely and rationally agree to principles of justice. Buchanan emphasizes, however, that there are significant differences in understandings of justice and that effort should be devoted to building consent among the public as to what constitutes a just society. Daniels N. Cambridge: Cambridge University Press; As a follow up to Daniels' publication Just Health Care , this book includes a broad scope summarized by a fundamental question of justice : what do we owe each other to promote and protect health in a population and to assist people when they are ill or disabled?

This issue subdivides into three further questions: 1 what is the special moral importance of health? Daniels provides answers as follows: health has special moral importance because it impacts on opportunities; health inequalities are unjust when they result from an unjust distribution of socially controllable factors; meeting health needs fairly requires supplementing general guiding principles with a fair deliberative process.

Daniels argues that these answers together provide a population view of justice in health and guidance on how societies should organize to address health equitably. Equity and population health: toward a broader bioethics agenda. Hastings Cent Rep ;36 4 In this article, Daniels argues that the field of bioethics should expand its scope to consider broader institutional and policy contexts.

He asserts that such a view focuses the field on population health as a fundamental good and on the pursuit of justice and equity in health. According to Daniels, bioethics has traditionally overemphasized decontextualized clinician-patient and researcher-participant relationships, as well as emerging technologies.

Following a review of current ethical challenges in population health, he suggests a broader bioethics agenda focused on unresolved questions related to two key areas: 1 the distribution of health; 2 the development of fair policies that affect health distribution. Faden RR, Powers M. Health inequities and social justice: the moral foundations of public health.

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz ;51 2 This article advances a theory of social justice that the authors argue provides the moral basis for public health. They compare and contrast this theory to different approaches utilitarian and libertarian , as well as to other egalitarian theories of justice. Two main principles underlie Faden and Powers' theory.

First, that social justice should focus on actual states of well-being rather than merely the capacity for well-being. Second, that inequality should be reduced by focusing on systemic disadvantage that impacts many dimensions of well-being and which results in diminished futures for those affected. From this theory the authors derive two moral functions for public health: 1 improve well-being by improving health; 2 monitor systemic disadvantages and intervene to improve the well-being of vulnerable groups.

A broader liberty: J. Mill, paternalism and the public's health. Public Health ; 3 According to this principle, the only justification for the state to infringe on individual liberty is to prevent unacceptable harm to others. The authors argue that many public health interventions aim to limit the harms individuals inflict on themselves. Such interventions would not be supported by Mill, who opposes regulation of 'self-regarding' behaviour. They suggest that most arguments in favour of paternalism fail because they continue to focus on individuals.

Taking a population-level perspective, however, turns the focus to lives saved rather than individual burden. The authors argue that such public health paternalism can provide a 'broader freedom' where people have better opportunities for health, enhanced prospects for life, and a wider range of choices. Mill, JS. On Liberty. Baltimore: Penguin; In this work, Mill presents his theory of liberty , which is founded on the freedom of individuals from restraint as long they do not cause harm to others.

This includes freedom of opinion and speech, freedom of assembly, and freedom of action without interference from the state. Most relevant to population health is the elaboration by Mill of his harm principle : "the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He also argues, however, that individuals owe two things to society in return.

First, as previously stated, that they do not do harm to others. Second, that each person should bear their share of the labours or sacrifices of defending society and its members from harm. Mill JS, Bentham J. Utilitarianism and Other Essays. London: Penguin Classics; This book includes extracts from the essays of two key utilitarian theorists: Jeremy Bentham and John Stuart Mill. In general, utilitarian theories evaluate the moral worth of actions based on their contribution to overall 'utility'.

In Bentham's work Introduction to the Principles of Morals and Legislation , he discusses his principle of utility. According to this principle, the ultimate standard by which actions should be judged is the degree to which they contribute to overall happiness. Mill outlined his own theory in in Utilitarianism.

In this work, he supports the greatest happiness principle , by which actions are judged right to the extent that they promote happiness and wrong to the extent that they cause pain. While Bentham believed that utility could be calculated, Mill felt that happiness was not always quantifiable. Thus, secondary moral principles are also useful guides for everyday life. Nixon S, Forman L. Exploring synergies between human rights and public health ethics: A whole greater than the sum of its parts. In particular, human rights strengthens public health ethics by: 1 contributing definitions of the right to health and the notion of indivisibility of rights; 2 emphasizing duties of the state to progressively realize the health of citizens; 3 recognizing the protection of human rights itself as a determinant of health; 4 refocusing attention on the health and illness of marginalized individuals and populations.

Rawls J. Justice as fairness: political not metaphysical. Phil Pub Affairs ; In this article, Rawls revisits his theory of 'justice as fairness' originally presented in his work, A Theory of Justice. Justice as fairness is presented as an alternative theoretical approach to utilitarianism. The aim of this theory is to reconcile the tension between liberty and equality. To aid in this analysis, Rawls posits the 'veil of ignorance' behind which one knows nothing of their position in society or natural abilities.

He argues that the rational choice from this perspective is to create a society based on fairness, and that this fairness rests on creating just institutions. Thus, he offers two principles of justice: 1 liberty principle — the equal right of all people to basic rights and liberties comparable to those of all people; 2 social and economic inequalities may exist, but for them to be considered just they must provide the greatest benefit to the most disadvantaged the difference principle , and be attached to offices and positions for which everyone has a fair equality of opportunity.

Robert JS. Systems bioethics. Am J Bioeth Apr;7 4 In this article Robert presents an approach to ethical analysis that builds on insights from systems biology. He argues that viewing ethical issues as dynamic, interactive systems helps to frame them within their social and political contexts. The process of moral landscaping surveys the diverse values, interests, and opinions regarding an issue and promotes interdisciplinary, cross-sectoral discussions.

These discussions help understand the different components of the system that need to be jointly considered. A second process suggested by Robert is that of moral architecture , which he defines as creating and maintaining spaces for reflection, deliberation, negotiation, and compromise. Such a process serves the goal of maintaining moral accountability to others, a fundamental component of civil society.

Schrecker T. Denaturalizing scarcity: a strategy of enquiry for public health ethics. Bull World Health Organ ;86 8 This article proposes 'denaturalizing scarcity' as a strategy to inform public health ethics enquiry. This strategy challenges the assumption that health-related resource scarcities are natural. Rather, we must analyze these scarcities to determine whether decisions within the control of society have permitted the resource scarcity to exist.

Schrecker provides two lines of reasoning to support such a strategy. First, priority should be given to meeting basic health needs, particularly due to the moral arbitrariness of birth into a particular country or social group. Second, there are multiple causal connections that link rich and poor, and moral responsibility has been argued to follow causal responsibility. Thus, denaturalizing scarcity is an alternative to mainstream health ethics, which usually accepts scarcity as a given. Instead, this strategy poses the question of why some settings are resource poor while others are not.

Sen A. Inequality reexamined. Oxford: Oxford University Press; In this work, Sen outlines his capabilities approach to social justice.

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He presents "equality of what? Sen argues for an approach that focuses on freedoms and capabilities.


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That is, a person's capabilities and freedom to achieve functionings that they have reason to value. Sen also distinguishes his approach to justice from that of John Rawls ; see above. He critiques Rawls' focus on the holding of 'primary goods' e. Sen argues that a capabilities approach to justice has profound implications for the way in which economic inequalities, poverty, and class and gender inequalities are understood and addressed. Weed DL. Precaution, prevention, and public health ethics. J Med Philos ;29 3 Weed summarizes the evolution of the precautionary principle and its variety of potential definitions.

In general, these definitions emphasize that we cannot always wait for scientific certainty before acting to prevent harm to the public. Embedded in this principle is the notion that action is taken earlier than it normally would be without precaution. Weed considers, then, how this may be expected to impact public health decision-making.

He argues that public health has always involved weighing costs and benefits in real-life situations and that standards of evidence are variably applied by public health practitioners. Thus, he suggests that prior to resetting standards of evidence to fit with the precautionary principle, the field should study how causal inferences are currently made in public health practice, their theoretical foundations, and the ethical implications of their use.

Whitehead M. The concepts and principles of equity and health. Health Promot Int ;6 3 This article, based on a series of documents produced by the World Health Organization, seeks to clarify what is meant by the concept of equity. Inequity is defined as "differences which are unnecessary and avoidable but, in addition, are also considered unfair and unjust".

Thus, not all inequalities contain the moral and ethical dimensions associated with the term 'inequity'. To determine if health differences are unfair and unjust, they must be contextualized within society at large. China presented the Confucian tradition of medical ethics while Italy underlined the need of justice and the protection of individual rights in DNA databases and furthermore ethical problems of susceptibility testing and synthetic biology.

Medical ethics - Mexico, South Arabia and Israel joined the debate about bioethics and Internet, bioethical demand for clinical pharmacokinetic and physician dependence on diagnostic aid. Israel, South Africa and Australia reminded the historical lesson of the Pernkopf Anatomy Atlas, debating furthermore medical futility and the need of an ethical code on the limits of intimacy and touch in complementary medicine.

Italy, China and Czech Republic talked about understanding of euthanasia by medical students, the right of a child on chronic ventilation to ask for home care, scientometrical studies on hot topics and research structures of Chinese medical ethics and pictorial art as a way of communication with an Alzeihmer patient.

Justice Is the Missing Link in One Health: Results of a Mixed Methods Study in an Urban City State

Poland, Israel, Italy, Netherlands discussed about when can family physician refuse to treat a patient, physician-patient communication during the endovascular and percutaneous therapeutic procedures, prenatal diagnosis, ethical education through professional courses and, the treatment of patients belonging to mythical cults. Argentina, UK and Philippines shared palliative care better than psychiatry in rape, the difficulties in patients with burn aftereffects, health policy and clinical governance related to regional differences in cancer survival of patients.

Indonesia, Poland, Croatia, Italy and China talked about ethical aspects in treating diabetes mellitus, conscientious objection in emergency contraception and hospital ethical committees. Medical deontology- Ethics, bioethics and medical deontology were the focus of the debate. In particular, after the historical development of medical deontological codes. Balance between Deontology and Legislation- Informed consent and advance directives for treatment, bioethical and clinical point of view about consent of minor, conscientious objection and, autonomy of professional practice and constraints of healthcare organizations were explained and debated.

Obstetrics and Gynaecologists from Croatia, Italy, USA asked themselves when does human life begin and talked about genetic diagnosis in preimplantation, prenatal diagnosis, planned home birth, the role of foetal therapy, private or public cord blood banking, evolving ethical challenges of HIV in obstetrics and gynaecology. The issues debated were trans- nationalization on the technique of assisted human reproduction, the legal position of sperm donors assisting single women to reproduce, the legal concept of filiation in Assisted Human Reproduction and having a child after death.

Human dignity and assisted reproduction, the rights of the unborn child, freedom and fears in oocytes freezing were also discussed. Beginning of life- The main topics of this workshop were a psychoanalytic approach in the intersection of the logics of filiation, an historical review and an actual debate on human embryo between res and person, political and judicial influences in Italian law on assisted reproduction technologies, bioethical issues at the beginning of life and female citizenship and, among parental responsibility and responsible parenthood the defence of children in Italian law medically assisted procreation.

Genetics was, as usual, another rich source of plenty ethical problems: data protection and their reuse, preimplantational genetic diagnosis and its acceptable applications, moral challenges of predictive information, next generation sequencing. USA, Spain, Brazil, Italy, Germany, Israel, Iceland, UK, Austria, France were debating about general and specific subjects such as recent research in epigenetic, ethical approach and responsibility in workplace drug testing, information on risk genes in breast cancer and bioethical issues of personal genomic through arts.

Confidentiality and privacy — Israel, Australia, Brazil and, Italy were talking about. Paediatrician odontology was deeply discussed, not only in traumatology ground but especially in child abuse. In fact one presentation described dental caries in children as a possible marker of child abuse by neglect, underlining the need of specific related guideline.

Dentistry and disability were discussed, too. Italian and Israeli Nurses debated about the possibility to refuse treatments to terrorists and also about autonomy and responsibility of their work in therapeutic obstinacy. These are only some of ethical dilemmas in nursing education and research. Nigeria, Italy, Azerbaijan underlined the importance and shared experiences among ethics knowledge of health workers, in particular of nurses.

Speech therapists talked about youth offending and speech and language therapy, complex patients, the role of speech and language therapist in senile age.

Study Session 7 Principles of Healthcare Ethics

Communication, bioethics and paediatrician palliative care, disorders of consciousness and awareness in severe acquired brain injury were debated, too. Psychiatrists from Israel, Canada, USA, Italy, Portugal, Pakistan, Germany, Belgium, South Africa, Brazil discussed about long acting injections anti-psychotic, legal representation of impaired patients, massive psychic trauma and resilience, impaired informed consent in research, experiencing seclusion, compulsory psychiatric hospitalization of minors and not only, autistic patients, mental health within prison system, primary targets in reformed psychiatric services, methylphenidate for cognitive enhancement, ethical codes, assessment of parenting competence, childhood trauma in the breakdown of family relationship, autonomy of the will of mentally ill patient, ECT treatment in involuntary mentally ill patients, the relationship between euthanasia and depression particularly in Holocaust survivors, desire for children and parenthood in mental health service users.

Italian, Turkish and Serbian cardiovascular surgeons expressed their need of bioethical training and the requirement of new rules for the outcome of new technologies. In particular they were presenting cases on abdominal aortic aneurysms in elderly people and diabetic patients with peripheral arteriopaty under bioethics lens. Italian pharmacists-promoters of good health were another topic of the session. Bioethics and the law- Brazil debated the right to disobey law based on moral, religious or philosophical convictions and its interface with bioethics, Ukraine described global and local dimensions of bioethics and health law, Poland talked about bioethical regulation in a pluralistic society.

China underlined joint development of bioethics and disciplinary building of health law while Croatia explained the legal status of embryo in the context of stem cell research. The experience of ethics committees in politics in Switzerland, of volunteerism pro-social behaviour in Czech Republic, of the need of sensitiveness for laws and rules especially related to disabled people in Italy, of media ethics in Macedonian journalism, of stimulating inter-professional ethical reflection in youth work in Netherlands and of ethics and evolution in UK were successfully shared.

Particular issues were a Swiss media project for the vulnerable, the New Zealand consideration of dictatorship as social fault lines, Israel law students screening as target of social change, USA securing the moral compass of children with autism in developing countries and, Taiwan post-graduate training program for the assessment of medical professionalism. Health care systems ethics experiences and proposal as ethical dimension to contemporary health care reform, decision-making reform, vertical health programmes, insurance medicine, personalised medicine were shared among USA, Belgium, Switzerland, Bulgaria, Australia, Turkey, Indonesia, Germany, Georgia.

Balance between deontology and legislation session remarked the autonomy of professional practice and constraints of healthcare organizations. In professional risks session there were remarked the ethics of safety and biological monitoring of worker respecting the principle of humanization of medicine and the dignity of the person, the overall protection aimed at reintegration of person-injured worker, the centrality of the person in the correct medicine approach retirement, the professional responsibility of the medical-legal evaluation process in social security and the bio-psychosocial approach to the person with disabilities to work.

Public Health Ethics: Global Cases, Practice, and Context | SpringerLink

Risk management and quality —An Italian experience of implementation of telemedicine in the transfusion medicine service, the ethical evaluation as a way to prevent medical errors, the raising awareness of error reporting were the main points of the discussions among Spain, Italy, Cyprus, Israel.

Reflections and perspectives of social security medicine session included the relief of suffering in the history of medicine and of the invalidity pension insurance, psychiatric morbidity in the elderly, cancers, biological therapy and disability, bioethics and social security medicine resources and, gene therapy and neuro-technologies in neurological patient. Furthermore teaching bioethics in medical schools, the role of citizens in genetic research, the role of international stakeholders in genetic research, and anatomical specimens of human origin on display were discussed, too.

Evaluating teaching and professional ethics, sharing their own experiences not only among interdisciplinary courses for law and medicine students or post-graduates, reflections and thoughts of teachers about ethics in science but, for example, trying to investigate ethical behaviour in temporal perspective. In the culturally relevant bioethics for Asia Pacific session the need to develop cultural relevant bioethics for Asia, bioethics from the Vedic tradition, the experience of local ethics committees, and bioethics education in medical schools through novel methods were the issues of the discussion.

India, Sri Lanka, Indonesia, Fiji shared own experiences from bioethics curriculum in medical education to evaluation and accreditation of bioethics education, from conflict between the advancement of knowledge and institutional ethics to the coming new era of change for the Pacific. A Japanese consensus building method, African ethics in bioethics curriculum, a Brazilian educational model, the Nigerian experience of integration between medical law and ethics into medical training and practice were the main issues of one session.

A Finland model tool of bioethics education in clinical research, the UK experience in teaching bioethics through videos, Japanese movies and dramas related to bioethics, the South African experience of humanising medical ethics in medical schools and, in particular, attitude of Lithuanian teachers on abortion were debated in another session. Indonesia and Bulgaria gave their own contributions about teaching bioethics in medical schools. Australia described bioscience ethics education and in particular human reproductive biology, Brazil presented principles of eco-bioethics in medical schools, Serbia talked about bioethics education on vulnerable people, Israel proposed the methodology of emotional intelligence while USA related on a disability bioethics curriculum.

Bioethics education of midwiferies in Indonesia, nursing ethics medical students in Mali, education in nursing in Japan, problems in effective ethics education of medical professionals in Bulgaria and, mutual learning in health professions in Italy were debated, too. Audio-visual tools , like cinema, television and cinematic narrative are really useful for bioethics teaching and research as Argentina and Colombia showed in their presentations. Digital society and emergent rights session explained new chances and differences, between innovation, knowledge and the dark side of technologies.

Forensic Medicine —Nigeria and Slovakia shared in this session general problems of their own countries concerning forensic medicine and, in particular, the development of molecular pathology infrastructure in Nigeria. Environmental Bioethics and in particular echo-bioethics, bio-culture, control on GMO food, marketization of water, proposal of reurbanization, effects of benzene exposure were debated by Nigeria, Azerbaijan, Canada, Italy, Brazil, USA.

In the field of Research oral presentations concerned the case of anthrax experiments in Israel Defence Forces, clinical ethics committees in Spain, the usage of bio-markers in Italian clinical settings, Kenyan Kilifi Health and Demographic Surveillance System follow up of refusals to participate in research, the involvement of children in nontherapeutic research in Switzerland, an experience of clinical study with medical device in Italy, the protection of human subjects in USA with Research Participant and Family Advocate, the legitimacy of race as variable in South Africa.

Organ transplantation - opt-out organ procurement policies in USA and arguments to improve procurement, the Spanish transplant procurement management, therapeutic transplantation of cadaveric tissues after judicial autopsy in Italy were some of the subjects of one workshop. In another workshop the discussions concerned transplantation pathway organisation, people opinions and expectations, a sociological model of donation and, in particular, ethical issues in the transplantation of uterus. Organ transplant, ethics and the law session presented, first of all, the principle of autonomy and of justice on organ transplantation and a deep ethical and juridical analysis, own experiences of Singapore, China, Israel and Ukraine were successfully shared.

Bioethics and Religion was the common field for Germany, Israel, USA, Poland, Brazil to talk about bioethics between science and religion, Christian anthropology and the new model of human perfection, the new law on religious circumcision in Germany, Jewish perspectives on distributive justice and economic consideration in medical care, coping with religious pluralism in public bioethics discourse.

There was a specific session about Islamic Bioethics. Israel, Czech Republic and Italy were discussing about assisted procreation and abortion, the employment of advanced technologies in gender issues and the integration of children with Down syndrome under the influence of Muslim culture. In other sessions there were presentations from Pakistan and UK about bioethics applied from the Islamic religion and Islam and palliative care. Ethical decision making —Italy, South Africa, Albania, Austria, Israel were dealing about very different issues such as intuition in clinical reasoning, the regulation of surrogate motherhood in South Africa, training activities of ethics and health communication in Albania.

There were also proposals of a multi-methodological model in clinical ethics and of a narrative approach in clinical ethics consultation. End of life - The discussion focused on technological delay of death, disorders of consciousness and brain death, from cardiac to brain death ascertain, the right to self-determination of terminally ill patients and, advance directives for medical treatment.

The living will between self-determination of the person and physician autonomy according to the Italian Acts, the role of the fiduciary in the end of life decision was debated, too. Risk of overtreatments and therapeutic obstinacy with its legal aspects, paying attention to futile treatment in neonatology, therapeutic obstinacy in geriatrics and extraordinary life-saving measures in ICU and as a consequence, going to the damage of therapeutic fury and the life-prolonging measures legislation of foreign countries were important points of the workshops.

Death and dying sessions debated on Romanian advance directive reality, gypsy women perspectives on end of life decisions in Spain, the Greek conception of good death, criminal offense of assisted suicide in Croatia and, the role of the family in end-of-life choices in Italy.