Access to Healthcare
The starting point for this chapter is the understanding that access to healthcare is a universal right of all humans and cannot be reduced to an object of consumption that is only accessible to people with the economic capacity to acquire it. The theoretical reference point for this focus is UNESCO’s Universal Declaration on Bioethics and Human Rights, in its articles 10, 14, and 15, which deal, respectively, with “equality, justice, and equity,” “social responsibility and health,” and “sharing of benefits,” along with the interrelations and complementarity that exist between these principles. This chapter is presented with division into three topics. Firstly, the reasons for choosing human rights as the foundation for studies are discussed, and some theoretical reference points enabling better comprehension of the basis that sustains the ideas presented are developed. Following this, equity is presented as an indispensable principle that should be incorporated into the discussion, thus reinforcing the understanding that unequal people and populations should be treated in a compensatory manner, with the aim of seeking true equality based on the humanitarian disposition of recognizing every individual’s rights starting from their needs and differences. Lastly, this chapter seeks to address the difficult problem of prioritizing the allocation of scarce resources so that access to healthcare is enabled for as many people as possible. This entry therefore intends to show that access to healthcare for all people, independent of their income level, should be considered to be a human right and that going beyond the obligations of governments and the private sector to support inclusive programs, the struggle of social movements towards better living and health conditions for all people without distinction should also be considered to be legitimate.
KeywordsAccess to healthcare Public health Human rights Justice Equity
Studies on access to healthcare can focus on a variety of angles and perspectives. Thus, in order to analyze this subject, it is firstly necessary to establish theoretical and applied scenarios for the approach taken. From a macroscopic view of the subject, two major issues need to be faced. One of these relates to establishing the type of healthcare to which reference will be made, i.e., whether the desired focus is on primary care or health promotion, secondary care (specific, specialized, or therapeutic), or comprehensive care relating to both primary and secondary levels together. The other issue, which is more complex, relates to the polemical concept of what is understood in real practice by “access to healthcare” in the contemporary context of most countries. This access might be regarded as an asset for consumption, i.e., as merchandise similar to other objects that are offered through the free market to users, to be commercialized in accordance with the rules of free supply and demand. Alternatively, this access might be interpreted as a universal human right that is established from the time of birth and is the public responsibility of the state and/or a matter of individuals’ or groups’ solidarity with their fellow human beings, to which all people should have access, without distinction.
In the first of these situations, the objective is to focus on healthcare in its entirety, i.e., from the most basic to the most complex actions, including not only what is understood by “access to healthcare” or “access to health-related assistance,” but also simply “access to health” in its broadest spectrum: not only biological but also social (in the sense of universality of access for individuals’ inclusion in the care system), economic (in the sense of costs), and political (in the sense of defining governments in relation to their public policies).
The promotion of health and social development for their people is a central purpose of governments that all sectors of society share. Taking into account that the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition, progress in science and technology should advance: a) access to quality health care and essential medicines, especially for the health of women, because health is essential to life itself and must be considered to be a social and human good…. (UNESCO 2005)
In addition, Article 15 of the same declaration will be used. This deals with “sharing of benefits,” which states that the benefits derived from scientific research should also envisage “access to quality healthcare” (topic b) and “support for health services” (topic d) (UNESCO 2005).
Based on these foundations, it can be comprehended that access to healthcare is a universal right of all human beings, such that people can fully benefit from the actions required for achieving this. Healthcare should not be reduced to a simple consumable object that can be acquired within the market of life only by individuals or groups of individuals who have the financial resources available for this.
Within this order of ideas, and with the aim of maintaining harmony with the epistemological proposal laid out above, the presentation of this subject will be divided into three major subtopics. Firstly, the reason for choosing the angle of human rights as the conduit for studying the universalization of access to healthcare is examined, through developing some theoretical reference points that enable better comprehension of the basis that sustains the ideas presented. Following this, it is sought to clearly show that there is no point in discussing global bioethics in academic books, with the courage to go into thorny topics like the high costs relating to access to comprehensive healthcare for people at the beginning of the twenty-first century. One essential principle to be incorporated in this regard is equity, with regard to the need for unequal compensatory treatment for individuals and populations that are also unequal, with the aim (still globally distant, but which needs to be pursued) of seeking and attaining true equality based on the humanitarian disposition to give equal recognition to each individual’s rights according to their needs and differences. Lastly, this entry addresses the no less thorny issue of prioritization of resource allocation so that access to healthcare can be achieved for as many people as possible who need it.
Access to Healthcare as a Human Right
In 1978, in the city of Alma Ata, in Kazakhstan, an assembly of the World Health Organization defined “health for all in the year 2000” as a target to be reached. Although this phrase might, at first view, seem to be merely utopian, with an unachievable objective, it stimulated both industrialized nations and poor countries to reflect more objectively on the worldwide health situation at that time and on the rights of individuals and peoples on the five continents to universal access to health and the basic care inherent to this.
The Brazilian Josué de Castro, who was president of the Executive Council of the United Nations Food and Agriculture Organization (FAO) between 1952 and 1956, wrote the unsettling book Geography of Hunger (Geografia da Fome; Castro 1948) in the now long-ago year of 1946, followed soon afterwards by the no less disturbing book Geopolitics of Hunger (Geopolítica da Fome; Castro 1951). Both of these books laid bare the map of the scourge that afflicted a large proportion of the population at that time. Almost 70 years later, despite enormous advances in the fields of science and technology, the panorama has unfortunately changed much less than what was expected.
In the specific field of health, in which topics that seem distant, like hunger, as mentioned above, and also more recent topics like obesity form part of its expanded scope, events have not occurred any differently. On the one hand, the industrialized countries, together with some privileged population segments in peripheral countries, have experienced extraordinary discoveries in this sector, which have provided access to new techniques, supplies, and medications, among other factors and activities, thereby adding many years to these people’s lives, with quality. On the other hand, in a diametrically opposite situation, an enormous number of people in peripheral countries, especially in the southern hemisphere of the world, continue to suffer and die from the same diseases that their parents and grandparents suffered and died from in previous generations. The international statistics show that there have only been modest changes in the epidemiological picture of these diseases.
While life expectancy at birth in Western Europe, North America, or Japan exceeded 80 years of age at the beginning of the twenty-first century, it remains at around 40 years in a large number of African countries like Burkina Faso and Sierra Leone, among others. In other words, individuals of the same species Homo sapiens, with identical genomic programming, through having had the privilege of being born in a “better” place, will be allocated twice as much lifespan as others who did not have the same luck. This picture is real, concrete, and current, and it needs to be noted that it is occurring in a world in which developed countries are demanding global compliance with democratic ideals and human rights, in which worldwide food production is known to be sufficient to ensure that the world’s seven billion inhabitants can have three meals a day, and in which the world’s economies combined greatly surpass the capacity to provide proper work, transportation, and housing so as to provide the conditions for individuals and people to survive with a minimum of well-being and dignity. Nonetheless, none of these ideals are being realized.
The consequences of this entire situation take material shape in the precarious living conditions of these people, which weakens them at an early age and makes them sick without the possibility of gaining access to the minimum care required to attend to their health. The concentration of resources and supplies in some places, in contrast to inequality and inaccessibility in other places, remains enormous. Investments of only a few tens of dollars per person/year in many African countries show that the scarcity of resources for application within healthcare is a reality. These amounts invested are well below what has been stipulated by the World Health Organization (WHO) as the minimum necessary.
In addition to the scarcity of public resources for investment in healthcare in poor countries, extreme poverty continues to be one of the most deadly threats to life in the globalized world of the twenty-first century, no matter how much this may seem paradoxical, considering that almost 50 years has passed since man reached the moon and that we have now entered the era of multiple organ transplantation, nanotechnology, and cell therapy. This is a crucial aspect of the problem that cannot be left aside in any responsible discussion relating to universal human rights and access to healthcare.
However, if the right to healthcare touches on key issues relating to social justice, nonfulfillment of this right can be seen to be a consequence of administrative inefficiency. Through the requirement to fulfill the right to healthcare, countries and peoples may face all of these issues, indicated repeatedly in different worldwide reports on health around the world. Situations such as social exclusion and extreme poverty therefore not only impede fulfillment of the social and historical right to healthcare but also particularly place obstacles that hinder fulfillment of the most fundamental human right, i.e., the right to life itself, through one of its primary requisites – the right to healthcare.
Although the problems are quite different in industrialized developed countries, these countries have their own problems to face up to and resolve. If for poor countries the central question is to decide where to cut resources, in the light of day-to-day situations of economic scarcity, the discussions in the more fortunate nations generally revolve around priorities and, at most, practical measures for rationalization of expenditure. Nonetheless, a new element has emerged in recent decades becoming subject to reservations among some experts that did sharpest criticism related with the high cost resulting from the use of new technologies. These costs are bringing almost insuperable difficulties with regard to maintaining public and social security healthcare systems, even in developed countries.
Daniel Callahan, co-founder and emeritus president of the Hastings Center of New York, has been a continual critic in relation to situations of the type described above, throughout his long professional and academic career of more than 50 years. He has always considered the limits imposed on the field of healthcare as an “insult” to medicine and to the inexorable process of “human finitude.” In his view, enormous powers for minimizing this process are now available through new therapeutic possibilities that bring new hope (Callahan 1994). Callahan is an expert who has continually and insistently advocated public and universal healthcare that would use rationalization measures if resources were insufficient. However, he would go further: in his view, such measures should be debated publicly and be defined with prior clarity by governments, instead of simply showing tolerant acceptance of the marginalization of poor people and losing the confidence of physicians. Because of such circumstances, physicians might find themselves obliged to participate in activities such as so-called administrative medicine, which in the view of many Latin American researchers, for example, are ethically dubious.
After some 30–40 years of international government and private efforts and research, and after the spending of billions of dollars, they are all getting steadily worse, with little progress of any serious kind being made. Perhaps there is a certain masochism (or maybe hubris) in going after such a difficult and often depressing topic, but there was another reason for my choice as well: in every case there is agreement that dealing with the problem requires massive changes in deeply embedded cultures, behavior, and ways of life. (p. 250)
Equity, High Costs, and Access to Healthcare
UNESCO’s Universal Declaration on Bioethics and Human Rights also incorporated the noun “equity” in its body of principles, through inclusion in Article 10 together with the topics of “equality” and “justice,” with the following wording: “The fundamental equality of all human beings in dignity and rights is to be respected so that they are treated justly and equitably” (UNESCO 2005). Although the topic of equity is also addressed in other chapters, reference is made to it here with the aim of reinforcing the “Interrelation and complementarity of the principles” that is proposed in Article 26 of this declaration, which gives it even more harmony and consistency: “The Declaration is to be understood as a whole and the principles are to be understood as complementary and interrelated. Each principle is to be considered in the context of the other principles, as appropriate and relevant in the circumstances” (UNESCO 2005).
Taking into consideration that people’s right to have access to healthcare constitutes an affirmative reference value in the context of bioethics, the question that emerges is: how can this right be put into practice? This is precisely why a reflection on equity is included in this discussion.
Even if under other names, the references to equity go back to the times of ancient Greece, and they pass through Roman law and into the Middle Ages, to arrive finally in modern times, starting in the period immediately after the Second World War. In this most recent period, it has become applied preferentially in the field of justice, thereby receiving different interpretations. Social movements, and especially those involved in struggles against different forms of gender, race, and sex discrimination, were its main precursors. More recently, starting in the 1970s, the concept began to be increasingly adapted and incorporated into the healthcare sector, especially in discussions relating to decision-making in the light of scarcities within resource distribution in the field of public healthcare.
At a meeting held in Geneva in 1996, which had the objective of reviewing the World Health Organization’s targets relating to the proposal for “health for all in the year 2000” (Bryant et al. 1996), equity was taken up again with renewed vigor and became a key word within the field of public health and healthcare at the end of the twentieth century
Basically, equity signifies a disposition to give equal recognition of each individual’s rights, starting from these individuals’ differences (Rawls 1999). Equality is the desired consequence of equity, and equity is the starting point for equality. In other words, it is only through recognizing the differences and the diverse needs of social subjects that equality can be reached. Equity is no more than an ideological starting point from which differences would tend to be annulled. Equity is the arrival point for social justice and the reference point for human rights, from which the next step should be recognition of participative citizenship (Garrafa et al. 1997).
Equity is therefore the ethical basis that should guide the decision-making process in allocating resources in order to optimize access to healthcare. Through using this principle, along with the principles of individual and public responsibility and justice, it is possible to bring the right to healthcare closer to material shape. Equity, i.e., recognition of different needs among subjects who are also different, in order to reach equal rights, is one of the paths of ethical practice towards achievement of universal human rights, between these and the right to life. In this analytical slice, equity is represented by the possibility that people might be attended in relation to their health problems. Equity is therefore a principle that enables resolution of a reasonable proportion of the distortions in access to healthcare, through providing the conditions for increasing the possibilities of life for significant portions of the population.
Establishing priorities within the specific field of access to healthcare, which is one of the central issues of the debate on the ethics of allocation of resources and of the field of public healthcare itself, is to hierarchize human needs. In this regard, managers who are tasked with making decisions regarding putting priorities into practice should avoid falling into perverse extremes like those that have already occurred in certain places. For example, in some places, special committees designated by the public authorities have ended up establishing linear lists of priorities for medical attendance, without taking care to place each case or specific situation in its context. These are established on the basis of highly dubious criteria relating to localized policies of clientelism that have an absolute distance from ethics. For example, it is not correct to horizontally and uncritically place citizens who are alcoholics (and who are therefore ill) in the last place on the waiting list for liver transplantation.
Medical investigation will lead us to extraordinary solutions, but these will be so expensive that they will give rise to tremendous social divisions. Preventive therapies that might be applied before irreversible lesions appear may even extend average lifespans by another 20 years… However, the social consequences of this biological revolution will be unpredictable. It is clear than such therapies will not have the capacity to benefit ten billion individuals and that the benefits will only reach those who have the means to pay for them. (p. 23)
Concern regarding this problem has grown according to how matters have been conveyed at international level. The impossibility of reconciling contradictory aims between each other, such as rationalization and containment of costs, quality of care, equality of access to healthcare services, and free choices of those providing and those receiving the treatment, requires reflection even by people who have always advocated the universal right to healthcare and to its provision. Whether from a cultural and moral point of view, or whether in relation to the practical effects from these rights, all of the abovementioned rights were winners during a large proportion of the twentieth century, when the welfare state theory was a current topic in many countries, especially in Western Europe (Berlinguer 1996a).
According to Amartya Sen and Bernard Kliksberg (2010), equity includes issues that are directly related to implementation of healthcare and with the capacity to produce good health, not only with regard specifically to the distribution of care and the way in which it can be accessed but also including legal justice and thus associating with this the importance of nondiscrimination in delivering healthcare services. Moreover, in their view, the commitment towards equity in healthcare should include broader topics within the field of social justice and within equity overall, without ever losing sight of flexibility of resources and the possible reach and impact that might be achieved through different social arrangements that could possibly be constructed politically.
Access to Healthcare and Prioritization of Resource Allocation
Today, it is no longer possible to continue to consider precepts and values as variables that are solely derived emotively or individually, or as used to be said formerly, in a “superstructural manner.” Ethical issues in practically all fields of human activity, in a large proportion of the countries in the present globalized world, historically ended up acquiring public connotations and thus ceased to be merely problems of individual conscience, to be resolved privately and within an intimate sphere. The present focus does not have the intention of clashing with the discourse of autonomy. On the contrary, it seeks only to avoid the maximalist connotation that this important bioethical principle has been acquiring, especially through some academic voices within Anglo-Saxon culture, within which this principle is quite frequently deliberately channeled towards individuality, which in turn slides towards individualism and ends up in inevitable egoism. This is generally incompatible with implementation of public policies (and even private policies) that are morally fair and politically balanced towards the common good.
Hans Jonas (1990) was one of the authors who most dedicated himself in the twentieth century to issues relating to the ethics of responsibility. According to his line of ideas, for example, with regard to the field of science and the right of access to it, freedom to create and use new knowledge should maintain a relationship with individual and public responsibility, in applying discoveries and their consequences.
With regard to the “ethics of public responsibility,” one aspect of this that should not be left aside in health-related reflections relates to definition of the priorities for the state’s investments, including examination of the destination, allocation, distribution, and control of financial resources that are directed towards the sector. Differently from the industrialized countries, the peripheral nations experience paradoxical situations going from the persistent presence of common diseases of poverty (dengue, malaria, Chagas, schistosomiasis, yellow fever, and so on) to significant levels in mortality statistics of issues that also occur frequently in countries that are more advanced (cancer, cardiovascular problems, stroke, traffic accidents, and so on). As diagnostic methods have become more expensive and technology has become naturally more sophisticated, the resources applied to healthcare have started to become insufficient, even in the rich countries of the northern hemisphere. The discussion on “priorities” has started to acquire increasingly dramatic ethical connotations. It is therefore the responsibility of the state and of the public and private institutions to individualize the moral solutions through which shortages can be addressed. Such solutions need to be free from both unfair discrimination and the tyranny of minorities (Harris 1988). Especially in the context of poorer countries, the expression “individualization of moral solutions” or “prioritization of public resources” ought to mean “preferential attention to the majority of the population that is in need.” This is a matter that needs to be addressed through understanding and using the focus of equity.
The issue of allocation and distribution of healthcare resources is therefore acquiring ever greater political and social importance. It has a direct relationship with determination of the state’s investment priorities and how much of the state’s overall budget will be allocated to the healthcare sector. This decision is inevitably political (Garrafa 1995). In addition, the compliance with what each country’s legislation has determined as the percentages destined for healthcare should also be analyzed, along with (as already stated) the priorities that some initiatives should receive in relation to others.
… ethical reflection places us under the obligation to make choices. It obliges us to seek solutions, from among the variety that are possible, that correspond not only to the criteria of efficiency and efficacy and to the balance between costs and benefits, but also above all to the requirements of priority, equity and morality…. (p. 22)
At the same time as the different communication media of the entire planet announce new discoveries and extraordinary advances within the fields of science and technology relating to healthcare every day, the world continues to live with the same health problems as observed many decades ago, particularly among the nations of the southern hemisphere, although similar situations are also being recorded on the peripheries of major cities in the northern hemisphere. Although these problems may have diminished quantitatively over the most recent years, solutions compatible with minimum levels of respect for human dignity are still far from being reached. At the same time as people living in some places on the planet are accustomed to access to high-complexity technology such as bone marrow transplantation or clinical use of embryonic stem cells, thousands of adults in children continue to die without healthcare in other places every day, from simple problems that could have been avoided through routine healthcare measures.
Faced with contexts like this, humanity oscillates between hope and repugnance: hope that the economy, science, and medical technology will be able to supplant these unacceptable situations such that the world might surmount the contradiction of moving forward with one foot in the nineteenth century and the other in the twenty-first, and repugnance towards the persistent continuation of daily life in which so many children, women, and elderly people scattered across the world do not have access to any type of healthcare (Berlinguer and Garrafa 1996).
Thus, the (bio)ethical conflicts generated through the contradiction that exists between the evolution of the contemporary world, with scientific and technological progress in the biomedical fields, and people’s sharing of and access to the benefits resulting from this progress are increasingly delicate. Sometimes, in different places around the world, the fragile border separating these situations has been broken, often in an unacceptable manner. Distortions are thus created, such as those that exist in issues relating to inaccessibility among the poorest sectors of the population, considered globally, with regard not only to the benefits from technical-scientific development but also to the reach of the basic sanitary consumer goods that are indispensable for a dignified life, also including access to healthcare.
It needs to be highlighted once again in this conclusion that during the twentieth century, the average life expectancy of people around this planet practically doubled. This has given rise to much more significant numbers of people of advanced age who therefore need specialized geriatric care. In addition, the advances relating to new discoveries have made it possible for people with access to these new technologies to live longer. All of this has allowed significant portions of the population to incorporate more years into their lives, while also adding more quality of life to the years that remain to them. However, this new and positive picture generates an unprecedented economic impact regarding medical healthcare, with significant increases in the expenditure of this sector.
For this entire range of issues to be addressed more appropriately, the most correct manner is for each country or region of the world to start to interpret and act on their morally conflictive problems or situations with greater parsimony and balance, in accordance with their own social, cultural, economic, and biological contexts. Some political and social movements, such as those relating to women, blacks, and homosexuals, among others, have been managing to clearly show to the society and to the world not only the importance of understanding and respecting differences but also the strength of rightful collective action. The concept of difference, in relation to gender issues, in the same way as in relation to racial or sexual preference issues, cannot signify inequality (or inferiority). On the contrary, this should retrieve the democratic need for each situation to be contextualized exactly from these differential parameters, so that true equality can be sought. Likewise, organized groups that have clear objectives through implementing organic actions are achieving ever more attention in the media and public pressure on governments, towards gaining social space.
In summary, going from simple and direct issues such as those relating to the rights of a pregnant woman to those relating to equality of access to healthcare for all individuals without distinction (an achievement that is considered distant for some social groups), and despite the difficulties still faced, these issues may gain new impulses from social and political pressures developed through democratic movements and even through moral advances in governmental behavior (although this seems unlikely) and from society worldwide.
The aim of the entry was therefore to show that access to health and healthcare for all individuals, regardless of their income level, should be considered to be a human right that goes beyond the obligations of governments and the private sector to support inclusive programs. The struggles of different social movements towards defense of better conditions of life and health for all individuals without distinction should also be considered to be legitimate.
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