Rui Nunes

BackgroundAdvance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people’s attitudes towards ADs.MethodsAn online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a –form—which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale—was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023.ResultsA total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence.ConclusionThe results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens’ autonomy in end-of-life care planning.

Background The field of bioethics examines the moral and ethical dilemmas that arise in the biological sciences, healthcare, and medical practices. There has been a rise in medical negligence cases, complaints against healthcare workers, and public dissatisfaction with healthcare professionals, according to reports from the Indian Medical Council and other healthcare associations. We intend to assess the level of knowledge, attitude, and practice of bioethics among the registered healthcare professionals (HCPs) of Maharashtra, India. Methods A State-level online survey was conducted among the registered HCPs (n = 2143) casing all five regions of the Maharashtra state using a pre-tested self-administered questionnaire. The responses were expressed as mean, and proportions with their standard deviation and 95% CI respectively. Binary logistic regression and a multivariate logistic model were used to determine factors associated with knowledge, attitude, and practice of bioethics. Results Of the 2143 registered HCPs in Maharashtra included in this study, most of them (65.2%) had adequate knowledge of bioethics. Adequate knowledge was associated with lower age, profession (nurses and dentists), employment in the private sector, HCPS at Marathwada and Pune, and higher educational attainment. About 3 in 5 HCPs (59.4%) had a favorable attitude towards the ethical practice of bioethics, and was associated with profession, place of work, region of practice, and work experience. The distribution of unethical bioethics practices among 10 items was proportionally high, and only 34.4% reported good/fair practice. The common unethical practices in the state were allowing patients to be examined by interns, and not informing them about professional misconduct to the regulatory bodies. Conclusion Most HCPs had adequate knowledge of bioethics, which is encouraging and would favor the laying foundation for forming a good bioethics framework. Only 3/5 HCPs demonstrated a favorable attitude, and the observed unethical practice is alarmingly common. A serious consideration to evaluate the compliance level of bioethics practice periodically and measures to educate, sensitize, and train bioethics among HCPs in Maharashtra is warranted.

Data on advance directives in Brazil are lacking. This study aims to assess the understanding of oncologists regarding advance directives and the frequency with which they discuss advance directives and advance care planning with their patients in Brazil. This is an observational, descriptive and cross-sectional study, conducted with cclinical oncologists associated with the Brazilian Society of Clinical Oncology. Participants were invited to answer a questionnaire prepared by the authors. In total, 72 physicians answered the questionnaire, of which 73% were under 45 years old and 56% worked in oncology for less than 10 years. Regarding the limits of intervention and end-of-life care during treatment, 54.2% of respondents reported not discussing it. Although 67% of oncologists know the term advance directives, they do not develop them with their patients and 57.2% do not perform advance care planning. Most oncologists in this study do not set advance care planning and advance directives for most patients.

Background Infertility is an increasingly prevalent disease in society and is considered by the World Health Organization to be a public health problem. An important ethical issue arises from the clarification of reproductive rights in a fair and equal way. The objective of this study was to deepen and update the knowledge and discussion about the difficulty of accessing infertility treatments in Brazil. Methods A cross-sectional observational study was carried out through the application of an online questionnaire that collected the socioeconomic characteristics of couples and identify how barriers to infertility care affect the most vulnerable populations. We included couples who sought medical assistance to achieve pregnancy at two clinics in the states of São Paulo and Minas Gerais. Results A total of 201 questionnaires were analyzed. Most couples self-declared as white and the average age of wives was 36 years and husbands 38 years. 65% (65%) of couples would proceed with the treatment in a different city to which they lived, 37% evaluated as having easy access to a medical specialist only after indication, and more than half of the participating have thought about giving up the treatment due to some difficulty in accessing it. 39% of participants sought more than one medical service to find better reception, 42% of couples sought more than one medical service to define where it would be better financially, and 67.2% referred to the high cost of treatments, that is, financial issues, as a great difficulty in accessing medical services and/or treatment. Although 72.6% of couples considered having a good quality of life, 54.2% admitted that infertility and the search for treatment generated anxiety/stress in the couple’s life. Conclusion There is a need for public education on reproductive health and for policymakers to raise awareness of the importance of the difficulty that many couples face in seeking treatment to become pregnant, especially in countries with less financial resources. Indeed, it is commonly accepted that there is a universal human right to access healthcare of appropriate quality as a matter of justice. Discussion of access to reproductive technologies should be considered taking into account the longstanding ethical debate regarding fertility, fecundity, and infertility, as well as reproductive care.

The National Medical Commission of India introduced the Competency Based Curriculum in Medical Education for undergraduate medical students in 2019 with a new module named Attitude, Ethics and Communication (AETCOM) across the country. There was a consensus for teaching medical ethics in an integrated way, suggesting dedicated hours in each phase of undergraduate training. The AETCOM module was prepared and circulated as a guide to acquire necessary competency in attitudinal, ethical and communication domains. This study was aimed to explore the perceptions of students and medical teachers and identify the challenges in teaching and learning process of the newly implemented AETCOM module. It was a mixed method designed study with structured questionnaires for students and teachers at various medical schools in India. Based on the quantitative data, in-depth interviews with medical teachers were undertaken. Challenges were perceived by both students and teachers. The students had a mixed perception, facing difficulties in passive learning with scarce resource materials. Challenges identified by teachers were a lack of knowledge and skills required for teaching bioethics, the logistics of managing large numbers of students in the stipulated time frame, interdisciplinary integration—both horizontal and vertical, and assessment program in terms competency-based education. The study draws the attention of all stakeholders for a revision and efforts for further improvement in the teaching and assessment process, and setting a standard model in medical education in India.

The Baby Care Scale was designed to assess the involvement of father in infant care during pregnancy and the postpartum period. This study aimed to examine the psychometric characteristics of the BCS – antenatal and BCS – postnatal versions. A sample of 100 primiparous fathers completed the BCS-AN and/or the BCS-PN and self-reported the measures of anxiety and depressive symptoms and of father–infant emotional involvement during pregnancy and the postpartum period, respectively. Good internal consistency was found for both the BCS-AN and the BCS-PN. A two-factor model was found for both versions of the instrument: household tasks and infant care tasks. The BCS-AN and BCS-PN subscales revealed good internal consistency. Higher scores on the BCS-AN predicted higher scores on the BCS-PN. Significant associations were found among the BCS, depressive and anxiety symptoms, and father–infant emotional involvement, revealing good criterion validity. This study suggested that both the BCS-AN and the BCS-PN are reliable multidimensional self-report measures that assess the involvement of father in infant care during pregnancy and the postpartum period.

The European Union faced high risks from personal data proliferation to individuals’ privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual’s control over their data is the so-called “right to be forgotten”, the right to obtain from the controller the erasure of records. In gender transition, this right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted—in particular, health data—is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between “the right to self-determination”, “the right to delete”, and “the right to identity and individuality”. Conclusions on the ethical admissibility of the ‘right to be forgotten’ to control gender-affirming information are presented.

The allocation of resources for health, as well as the distribution of other social goods, being a political problem, can also be observed as belonging to the universe of distributive justice, considering that all citizens must have the necessary means for an acceptable physical, psychological and social performance. Individual autonomy, paradigm of a full citizenship in a modern society, cannot otherwise be achieved. Human dignity seems to imply that no citizen can be excluded from the basic health system due to the lack of financial resources. Indeed, equal access of all citizens to basic social goods and therefore to key places in society – principle of fair equality of opportunities – is one of the core aspects of Rawls's difference principle. It is, in essence, about ensuring the exercise of the right to individual self-determination in the relationship between the individual and society, as well as the right to play a social role according to skills and merit. But, it is not only the theory of the social contract that provides for a fair equality of opportunities. Different perspectives of justice contemplate this ideal. As suggested by Tristram Engelhardt Jr individual autonomy must be interpreted as a value in itself and a determining factor for the exercise of a full citizenship. But, justice is an ideal that must be progressively built. Whether in a specific society or on a global scale. And, the great challenge of humanity is precisely to recognize the existing intercultural differences and propose sufficiently flexible ideological systems that can be applied in different countries with very different levels of social and economic development. Without detracting from the ethical principles that should underpin the construction of the 21st century global society.

One thousand four-hundred thirty Portuguese psychologists answered a questionnaire that had been designed in order to ascertain the level of acceptability of a set of proposed ethical principles, which subsequently served as a basis for the Portuguese Psychologists’ Ethics Code. On the one hand, the results show that, as expected, the ethical principles rated high on the evaluation scale. On the other hand, the results also highlighted the need for a formal regulation of the practice of psychology in Portugal, especially in view of participants’ noticeable failure to recognize the importance of the principle of professional integrity. The responsibility of psychologists in modern societies is huge. As such, the large number of different training programs in Portugal, and the implied lack of a strong professional identity, is a cause of concern. The creation of a professional association allows an external identification of the profession in terms of aims and methods. The main goal of such an association is to promote public trust and enhance public demand. The results also indicate that training and experience lead to a higher valorization of ethical principles, and this is an insight that will be of great importance to the professional practice of psychology.

Background:The theoretical framework of Jϋrgen Habermas suggests that effective communication requires competent participants with an objective attitude that complies with the rules and worlds designated as objective, social and subjective. This situation determines communicative action, which stimulates the search for mutual understanding and results in a process of interaction that promotes self-determination.Objectives:In this study, the discharge letters of patients with myocardial infarction were explored regarding the provision of information. The patient’s right to information and the duty of informing were analysed according to the perspective of Jϋrgen Habermas.Research design:This was a cross-sectional analysis of all discharge letters that were directly related to nursing interventions regarding the provision of information to 106 patients. In this major study, the difficulties faced by patients who experienced a myocardial infarction and the changes in their lifestyles were analysed based on the type of information received.Ethical considerations:The hospital Ethics Committee approved the study, which complied with ethical principles and required informed consent.Findings:In the nursing letters, interventions related to the provision of information were conducted at an average of 3.59 interventions per patient. For 8.5% of the patients, however, no interventions related to the provision of information were performed. The most common area of information during hospitalisation was related to the management of signs and symptoms and applied to 90.6% patients.Discussion:The nursing interventions did not cover patient education, transition processes or awareness of the disease. Thus, the right to information can be questioned.Conclusion:Information is a right, and communication is extremely important. Health professionals should be aware of this importance regarding both care management and the satisfaction guarantee. The sharing of information by health professionals based on their competency is essential for patients to exercise their right to self-determination and decision-making.

In most western countries, there is a ‘human organ shortage’ with waiting lists for the performance of transplantation. In a recent report of the UNOS Ethics Committee it is stated that there are approximately 31,000 potential recipients on waiting lists, but only one fourth of potential donors gave their specific consent.Xenotransplantation – defined as the transplantation of animal cells, tissues or organs into human beings – is associated with particular ethical dilemmas, namely the problems of efficiency and safety of this medical procedure. The objective of this study is to analyse the ethical dilemmas in xenotransplantation with the background of a personal view of moral life. Also, xenotransplantation will be evaluated as far as the legal regulation of transplantation is concerned. In particular, we will consider patients rights in accordance with existing laws on organ and tissue transplantation, animal research and clinical trials.

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated

Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels’ “accountability for reasonableness” methodology. However, a question still remains: is “accountability for reasonableness” not only legitimate but also fair? The objective of this paper is to try to adjust “accountability for reasonableness” to the World Health Organization’s holistic view of health and propose an evolutionary perspective in relation to the “normal” functioning standard proposed by Norman Daniels. To accomplish this purpose the authors depart from the “normal” functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the “normal” functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper “equal opportunity function” might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an “all or nothing” basis but can contribute to a hierarchy system of priorities in health care

In most western countries, there is a 'human organ shortage' with waiting lists for the performance of transplantation. In a recent report of the UNOS Ethics Committee it is stated that there are approximately 31,000 potential recipients on waiting lists, but only one fourth of potential donors give their specific consent. Xenotransplantation--defined as the transplantation of animal cells, tissues or organs into human beings--is associated with particular ethical dilemmas, namely the problems of efficiency and safety of this medical procedure. The objective of this study is to analyse the ethical dilemmas in xenotransplantation with the background of a personal view of moral life. Also, xenotransplantation will be evaluated as far as the legal regulation of transplantation is concerned. In particular, we will consider patients rights in accordance with existing laws on organ and tissue transplantation, animal research and clinical trials

In congenitally or prelingually deaf childrencochlear implantation is open to seriousethical challenge. The ethical dimension ofthis technology is closely related to both asocial standard of quality of life and to theuncertainty of the overall results of cochlearimplantation. Uncertainty with regards theacquisition of oral communicative skills.However, in the western world, available datasuggest that deafness is associated with thelowest educational level and the lowest familyincome. Notwithstanding the existence of aDeaf-World, deafness should be considered as ahandicap. Therefore, society should provide themeans for the fulfilment of a deaf child'sspecific needs.For the time being there is no definitiveanswer with regard the best way to rehabilitatea particular deaf child. Therefore,communitarian values may be acceptable. If thedeaf child parents' decide not to implant,their decision should be respected. Guardiansare entitled to determine which standard ofbest interest to use in a specificcircumstance. They are the proper judges ofwhat (re)habilitation process is best for theirdeaf child. However, most deaf children areborn to two hearing parents. Probably, theywill not be acculturated in the Deaf-World. Itfollows that cochlear implantation is awelcomed (re)habilitation technology.If auditory (re)habilitation will in the futureprovide the necessary communicative skills, inparticular oral language acquisition, customs,values and attitudes of the hearing worldshould be regarded as necessary to accomplish adeaf child's right to an open future. Ifcochlear implantation technology will provideall deaf children with the capacity to developacceptable oral communicative skills –whatever the hearing status of the family andthe cultural environment – then auditory(re)habilitation will be an ethical imperative.

The health sector is facing many challenges, and there is a need to maintain the delivery of high‐quality health‐care. Issues related to equity and access to health‐care have emerged in a context of an economic recession in which the sustainability of the health system depends on everyone, including the actions and decisions of professionals. Therefore, nurses and their skills may be the answer to ethical, professional and community health management, but this recession could lead to major problems in the education of nurses in daily health‐care practice. Due to the limited availability of resources, nurses are increasingly taking leadership positions, continuing to develop their critical abilities and thinking skills, and considering sciences such as deontology and ethics. The main goals of this study were to reflect on the economic recession and its impact on health‐care and to demonstrate the contribution of nursing to the sustainability of health‐care and in the promotion of individuals' dignity. The authors conclude that health‐care depends on economic redistribution and, in this context, needs to be equitable and fair. Nurses have the responsibility to develop their profession according to the underlying sciences and can therefore strategically help the healthcare system.

Questions of social justice and health-care costs are some of the concerns of society. The cost caused by cardiovascular diseases can have an enormous impact, and it is important to know what patients think about illness costs when they are hospitalized. Two interviews were realized in a longitudinal study, in a sample of 106 patients submitted to expensive techniques in Cardiology (Portugal), to understand the patients’ perception about the health costs and behavior changes based on awareness. We can conclude that cardiovascular diseases are a global phenomenon that generally affects all social groups. From those interviewed, 83% of the patients agree about getting information concerning the treatments and intervention costs during hospitalization because the information about costs can bring the necessary tools for improvement in patients and health resources; 70.8% of the patients say that this information could bring awareness to the patient’s life, enhancing responsibility and personal autonomy

Evidence-Based Medicine (EBM) is defined as the conscious, and judicious use of current best evidence in making decisions about the care of individual patients. The greater the level of evidence the greater the grade of recommendation. This pioneering explicit concept of EBM is embedded in a particular view of medical practice namely the singular nature of the patient-physician relation and the commitment of the latter towards a specific goal: the treatment and the well being of his or her client. Nevertheless, in many European countries as well as the United States, this integration of the best evidence from systematic research with clinical expertise and patient values appears to be re-interpreted in light of the scarcity of healthcare resources. The purpose of this paper is double. First, to claim that from an ethical perspective EBM should be a guideline to clinical practice; and second, that in specific circumstances EBM might be a useful tool in macro-allocation of healthcare resources. Methodologically the author follows Norman Daniels' theory of democratic accountability to justify this assumption. That is, choices in healthcare must be accountable by democratic procedures. This perspective of distributive justice is responsible for the scope and limits of healthcare services. It follows that particular entitlements to healthcare — namely expensive innovative treatments and medicines —may be fairly restricted as long as this decision is socially and democratically accountable and imposed by financial restrictions of the system. In conclusion, the implementation of EBM, as long as it limits the access to drugs and treatments of unproven scientific results is in accordance with this perspective. The use of EBM is regarded as an instrument to facilitate the access of all citizens to a reasonable level of healthcare and to promote the efficiency of the system

The increasing costs of healthcare delivery led to different political and administrative approaches trying to preserve the core values of the welfare state. This approach has well documented weaknesses namely with regard to healthcare rationing. The objective of this paper is to evaluate if independent healthcare regulation is an important tool with regard to the construction of fair processes for setting limits to healthcare. Methodologically the authors depart from Norman Daniels’ and James Sabin’s theory of accountability for reasonableness and try to determine if new regulatory models—namely independent agencies—perform better with regard to the public disclosure of the reasons and rationales of healthcare rationing. In publicly financed healthcare systems independent regulation is an important tool to assure fair and reasonable procedures of prioritising services. In accordance with the principle of public accountability, independent regulatory agencies are particularly well suited to assure publicity of the decision-making processes, relevance of the rationale involved and particularly mechanisms for challenge and dispute resolution regarding limit setting decisions. It follows that independent healthcare regulation could be regarded not only as an instrument for performance improvement but also as a tool of social justice. The authors conclude by stating that accountability for reasonableness should be regarded as a landmark of any healthcare reform. And therefore regulators have the social task of assuring that the rationales for limit-setting decisions are clearly accessible to the public

Changes in modern societies originate the perception that ethical behaviour is essential in organization’s practices especially in the way they deal with aspects such as human rights. These issues are usually under the umbrella of the concept of social responsibility. Recently the Report of the International Bioethics Committee of UNESCO on Social Responsibility and Health has addressed this concept of social responsibility in the context of health care delivery suggesting a new paradigm in hospital governance. The objective of this paper is to address the issue of corporate social responsibility in health care, namely in the hospital setting, emphasising the special governance arrangements of such complex organisations and to evaluate if new models of hospital management (entrepreneurism) will need robust mechanisms of corporate governance to fulfil its social responsiveness. The scope of this responsible behaviour requires hospitals to fulfil its social and market objectives, in accordance to the law and general ethical standards. Social responsibility includes aspects like abstention of harm to the environment or the protection of the interests of all the stakeholders enrolled in the deliverance of health care. In conclusion, adequate corporate governance and corporate strategy are the gold standard of social responsibility. In a competitive market hospital governance will be optimised if the organization culture is reframed to meet stakeholders’ demands for unequivocal assurances on ethical behaviour. Health care organizations should abide to this new governance approach that is to create organisation value through performance, conformance and responsibility

In all countries where health care access is considered a social right, regulation is both a tool of performance improvement as well as an instrument of social justice. Both social (equity in access) and economical (promoting competition) regulation are at stake due to the nature of the good itself. Different modalities of regulation do exist and usually new regulatory cycles include the creation of stronger regulatory agencies. Indeed, health care regulation is rising steadily in most developed countries as a consequence of the introduction of the New Public Management perspective to provide essential public goods.Health care is delivered by different organisations with very different cultural backgrounds—public and private (profit and non-profit)—that should be accountable for their decisions. Control by regulatory agencies is instrumental to accomplish this goal. However, there is some dispute with regards the degree of regulatory autonomy. The objective of this paper is to determine if independent regulatory agencies (IRAs) are effective in carrying out health care regulation. The authors apply Walshe’s analytical framework to the Regulatory Authority of Health (Portugal) to answer the question if independent regulation works.In conclusion, the two year experience of the Regulatory Authority of Health is important not only because the primary goals of independent regulation were achieved but also because this authority is now a full partner in the health care sector. However, independent agencies need to develop strong mechanisms of accountability because good regulatory governance is the paradigm of this institutional innovation.

O direito à proteçāo da saúde tende hoje a ser considerado como uma conquista civilizacional, o que faz com que a salvaguarda deste direito seja sobretudo uma responsabilidade da sociedade e das suas instituições democráticas. Tal como noutros países ocidentais, a existência em Portugal de um sistema público de proteçāo da saúde enquadra-se nesta dinâmica, sendo esse um factor decisivo para a melhoria sustentada dos indicadores de saúde da população portuguesa. Nessa medida, defende o autor do artigo, a política de saúde deve sempre tentar conciliar os princípios da equidade e da solidariedade com a vontade social, democraticamente determinada, atribuindo um carácter operacional a critérios de justiça social, fundamentais para uma política de protecção da saúde atenta às necessidades básicas dos cidadãos. Por outro lado, reconhece-se também que, não obstante o contributo fundamental do Serviço Nacional de Saúde para a protecção da saúde dos portugueses, a gestão estatal dos serviços públicos se tem revelado pouco eficiente. Daí a necessidade de se promover uma nova cultura na saúde fundada na convergência de dois factores aparentemente irreconciliáveis: a qualidade na prestação de cuidados de saúde e a optimização da utilização dos recursos disponíveis. Para isso, porém, é necessário perceber que a saúde e a sua protecgao são um bem económico altamente dispendioso e não "gratuito", ainda que frequentemente o seja no momento da utilização dos serviços. Daí se deriva também, segundo o autor, a necessidade de se promover a eficiência do ponto de vista económico através da adequada gestão dos recursos financeiros e dos meios humanos e materiais. De facto, mais do que um direito constitucional, a protecção da saúde deve ser considerada como um dos grandes pilares de uma sociedade democrática e plural. /// All countries face the issue of choice in health care. It is one of the main problems of pluralistic societies. Allocation of healthcare resources is clearly associated with the concept of distributive justice. But does justice, in this context, imply the existence of a right to healthcare? And if it does, is it a fundamental right? Moreover, does such a right, if it exists, include all types of healthcare services or should it be limited to selected types only? Thus, choices must be made and priorities must always be set. In the Portuguese Constitutional Law the right to healthcare services is regarded as a fundamental one. But in most European countries the right to healthcare is a social right, politically and not ethically determined. Hence, this issue is one of distributive justice the aim of which is to ensure that everyone has access to necessary care based on the substantive ethical principles of equity and solidarity. The article proposes that resource allocation is paramount in public policy particularly in regard to healthcare. But whatever the healthcare financing model, the problem is that the efficiency of the system might be related to the degree of state intervention on the healthcare market. Moreover, the ethical principles involved in the debate are associated to an agreed definition of human dignity. This concept implies that no citizen should be excluded from the health system due to lack of financial resources. In fact, the full achievement of personal liberty implies equal access to certain basic goods, namely to the healthcare services deemed necessary.

The lack of economic sustainability of most healthcare systems and a higher demand for quality and safety has contributed to the development of regulation as a decisive factor for modernisation, innovation and competitiveness in the health sector. The aim of this paper is to determine the importance of the principle of public accountability in healthcare regulation, stressing the fact that sunshine regulation—as a direct and transparent control over health activities—is vital for an effective regulatory activity, for an appropriate supervision of the different agents, to avoid quality shading problems and for healthy competition in this sector. Methodologically, the authors depart from Kieran Walshe’s regulatory theory that foresees healthcare regulation as an instrument of performance improvement and they articulate this theory with the different regulatory strategies. The authors conclude that sunshine regulation takes on a special relevance as, by promoting publicity of the performance indicators, it contributes directly and indirectly to an overall improvement of the healthcare services, namely in countries were citizens are more critical with regard to the overall performance of the system. Indeed, sunshine regulation contributes to the achievement of high levels of transparency, which are fundamental to overcoming some of the market failures that are inevitable in the transformation of a vertical and integrated public system into a decentralised network where entrepreneurialism appears to be the predominant culture.

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician–patient–family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached.