It is acceptable in the Western society that clinical decisions are carried out in accordance with the patient's wish and approval (the patient's autonomy) as well established in the Israeli law since 1996. The lack of consent regarding this point may cause difficulties in doctor-patient relations. Our study compares the doctors' concept of autonomy and that of hospitalized patients in the unique Western medical center of Be'er Sheva, who come from a variety of cultures- Western and Eastern, immigrants and seniors, Jews and Arabs (mostly of Bedouin tribes).
A non-intervening, prospective questionnaire which included two parts was used. The first part included epidemiological data and doctors' views concerning given statements, whereas the second part used a comparison regarding the doctors' and the patients' judgment of subjects related to the patient's autonomy, the doctor's and the family's authority as seen in clinical cases. A questionnaire was handed out to 105 doctors and to 150 patients, both divided to 3 subgroups: senior Jews, new Russian immigrants and Arabs.
The doctors (5.88 of 7 average) as well as the patients (6.19 average of 7) considered supplying the patient with information concerning his disease of utmost significance and they also expressed their wish to exercise a mutual partnership in the process of making medical decisions regarding the disease and its treatment.
On the other hand, patients feel they do not get the information they require from their doctors and they grade their knowledge of their disease as mediocre, despite the fact that most doctors report that they give their patients detailed information and the majority (about 85%) of all groups express their wish that the patient should be active in planning his treatment and follow-up programs. The majority of both doctors and patients consent that a terminal patient who wishes to terminate his life should not be ventilated even if the doctor and his family members approve of it. Yet, the doctors' consent is more significantly than the patients'.
There is a higher consent among patients that the family of an HIV patient should be informed of the status of his disease despite his objection, compared to the doctors', regardless of cultural or religious differences. There was a significant difference in the attitude towards Autonomy between the Arab patients group and the other two patients groups. The Arabs expressed less interest in their autonomy, especially in their wish to get information about their disease.
The study reveals that doctors approve of the patient's autonomy much more than the patients themselves. Cultural context influences the attitude towards Autonomy and the doctor-patient-family relationship in making clinical decisions. Clinical care givers should be aware of those cultural differences which may exist between patients who were born, raised and educated in the same land and get their medical treatment in the same hospital. Cultural differences may also influence the patients' satisfaction with and response to the treatment, as well as their relation and cooperation with the medical team. Doctors' vs. patients' approach.
Asymmetry of the attitude to truth-telling to dying patients in Latvia
Neiders, Ivars; Silis Vents; Sile, Vija
It is difficult nowadays to avoid being shocked after discovering that the virtue of sincerity in physician–patient relationship has been neglected in almost all ethical codes till the middle of the 20-th Century. Such neglect is almost unimaginable after radical changes in medical ethics that have taken place since then, namely, the heavy emphasis on mutual trust, patient’s autonomy and informed decision-making. There seems to be a widespread consensus that all things being equal it is a physician's duty to tell the truth to their patients, even in cases when the news are very bad. This attitude hardly needs any defence nowadays.
However, it does not follow from the above consensus that both involved parties have the same attitude towards truth-telling. A number of empirical studies indicate that in spite of the fact that many physicians assume that patients generally do not want to learn the sad truth about their condition; most patients express the desire to know news even if they are bad. What is paradoxical in the case of physicians is the sort of double standard in their attitude toward truth-telling, i.e., one the one hand, most medical professionals say that they would not speak openly to their patients, on the other hand they themselves wish that they would be told the truth. We call this the asymmetry of the attitude to truth-telling (AATT).
There are reasons to believe that attitudes to truth-telling may vary from society to society. As the tradition of paternalism inherited from soviet health care system has not been completely extinguished yet, we conjecture that AATT characterizes Latvian health care professionals as well. To test this hypothesis we plan to conduct a survey and to compare the attitude to truth telling of medical students to that of practicing physicians. We hope to establish, whether doctors are prone to AATT and how their attitudes differ (if at all) from those of students. Another question we want to address in our paper is what (if anything) should be done with the way of how young doctors are trained. This in turn requires a deeper understanding of AATT itself.
Respect for personal identity and justice in genetic testing and counseling, with a special focus on Italian law
The paper will concern the topic "Respect for personal identity and justice in genetic testing and counseling, with a special focus on Italian law". The aim is to work out, in the light of a critical analysis of law, the relevance of genetic testing and counseling, with attention to personal identity and justice. Knowledge that may and might be obtained through genetics (as regards pathologies or the risk of occurrence) raise a lot of questions: the acquisition of awareness of possible risks and benefits (as regards the subject or the embryo/foetus), the capacity of acceptance of the answer when there is no possibility of therapy (graduating the right to know and the right not to know), the conflict between the individual interest and the others or society, the possibility of diffusion of information with implications on the intimacy of the subject or on discriminations. In this field informed consent is not sufficient: the social interest needs a balance between private and public sphere and it is necessary to outline the relations between freedom and responsibility. The increasing request of genetic tests tends to show and highlight these problems.
The specific challenges of genetic testing and counseling depend on the type of genetic test that is performed: diagnostic, predictive, susceptibility, pharmacogenetic, carrier, prenatal or preimplantation genetic testing. Also the ethical problems related to genetic counseling depend largely on the kind of test that is at stake. Prenatal and preimplantation counseling might have to deal with the status of the human embryo; carrier counseling will frequently be confronted with the issue of reproductive health; the counseling of children will have to cope with this issue of (lack of ) autonomy. What is common in most forms of genetic counseling and testing is the issue of privacy and confidentiality.
According to this, we want to expose the solutions adopted in Italian law on this issue within the more general principles laid down by the Oviedo Convention on Human Rights and Biomedicine. (The content of the paper is a part of the results obtained in the course of the research “Gen-Etica”, funded by the Italian Ministry for University and Research and done by the Centre for Studies on Biolaw LUMSA – Rome, directed by Prof. Laura Palazzani).
The methodological problems and the ethical dilemmas in triage
In this paper I argue that triage is a standard procedure in health care. It is just the “usual practice” which is caused by the scarcity or the shortage of resources, on the one hand, and the fluctuating demand, on the other. However, I claim that there are indeed problems and dilemmas caused by this procedure which arise from the criteria that are used in its application under radically varying circumstances.
Conditions that require triage range from extreme cases of natural disasters such as earthquakes, floods, epidemics, a tsunami, a volcano eruption to plain man-made disasters such as wars and terrorist attacks. However, the most common and the most problematic cases are those which are the outcome of shortages that result either from bad planning or from the specific political priorities set in financing the various sectors of health care, e.g., in intensive care, neo-natal care, mental health etc.
The criteria which are used in triage, that is in deciding who is to be treated first or treated at all, are the “conclusions” of informal arguments. The grounds, the reasons, the premises in these arguments derive from the political, the social and the ideological environment existing at the time, the present economic conditions and the available resources. The generally accepted -at the time- moral theory and the medical knowledge concerning the nature of the problem at hand play also a very important role. Lastly, the psychological factor, i.e. the reaction of individual health care providers to critical conditions may alter the designed course of things, the pre-determined policies and apply extraordinary ad hoc measures.
I claim, also, that the methodological problems and the ethical dilemmas arising out of triage are the result of the arguments employed for its justification. The core question which has to be answered is who is going to be treated first or, to use a term that I have employed repeatedly in the past, how and why is one going to be considered a “morally significant addressee of an action”.
Ethical Considerations of Triage – The IDF Humanitarian Mission to Haiti as a Case Study
Natural disasters occurring in populated areas may lead to multi-casualty events and to extensive destruction of infrastructures, including medical facilities. Humanitarian aid delegations sent to disaster zones to provide medical treatment have to cope with, among other pressing needs, the complicated issue of patients' prioritization under circumstances of scarcity of resources. The IDF (Israel Defense Force) humanitarian mission to Haiti (January 2010) is presented as a case study for the various considerations that ought to be included in designing the clinical-ethical policy of a field hospital and for setting priorities between patients.
Two principal questions will be discussed. The first is related to the application of principles of justice: Do the concept of justice and the rules of justice also apply under circumstances of severe scarcity, or are these rules negated, as suggested by David Hume? I argue, contrary to Hume, that the concept of justice and its principles apply even under circumstances of severe scarcity; moreover, the moral obligation to act upon them is not dependent on their advantage to the whole society. The second question deals with the substance of these rules of justice. Here, egalitarian and utilitarian considerations are examined within the context of establishing priorities between patients, and a complex utilitarian account is suggested as a triage model. A critical review of the hospital officers’ decisions at the field hospital in Haiti is examined according to the guidelines of this suggested model.
Knowing where you come from”: the meaning of genetic relatedness and the right of donor-conceived offspring to know their genetic origins
The community of donor-conceived offspring is now coming of age and the voices and concerns of these individuals are coming to the forefront. A growing body of literature is currently emerging, describing their experiences and unique perspectives and fuelling the debate about the right to know one’s genetic origins.
In this paper, I argue that different claims are being made under the umbrella concept of ‘the right to know one’s genetic origins’ in a manner that confounds the debate. To achieve greater conceptual clarity we should distinguish between at least four aspects of this right. Each of these aspects relies on a distinctive understanding of the meaning of ‘genetic relatedness’ and can be addressed by a different policy. The paper delineates these different policies and meanings.
This paper thus describes four aspects of the right: the medical aspect which points towards the right to know one’s full medical history and to know medically relevant genetic information about the donor; the identity aspect which points towards the right to personal information about the donor as a person (narrative information) that would assist offspring in overcoming identity issues; the relational aspect which points towards the right to know the full identity of the donor in order to contact him or her and attempt to establish a relationship; and the parental disclosure aspect which relates to the right to know the truth about the circumstances of one’s conception as trumping parents’ right to privacy.
I argue that each of these aspects is based on a different understanding of the meaning of genetic relatedness. The medical aspect expresses a narrow understanding of genetic relatedness as meaningful solely in a biological sense; the identity aspect expresses a broader understanding of genetic relatedness as having an effect on personal identity; the relational aspect expresses an extensive understanding of genetic relatedness as justifying an appeal for a personal relationship; and the parental disclosure aspect expresses the most far-reaching understanding of genetic relatedness, seeing it as creating a connection powerful enough to justify state intrusion into the family.
Each of these aspects can be addressed by a different policy solution, from disclosure of medical history and genetic information, through disclosure of de-identified personal information, all the way to disclosure of donor identity and to legal enforcement of truth-telling within the family. I therefore argue that these policy options are based on distinctive notions of the role that genetic relatedness should play in the construction of families and in social life. As we expand the scope of the meaning of genetic relatedness, we expand the scope of the right and provide justification for policies that allow it to trump the rights of other parties.
Ethical decision-making by terminally ill patients
End-of-life issues are a standard topic of medical ethics. The vast literature of the last couple of decades however focused most frequently on the moral perspective of providers of medical care or assistance to die, and of those regulating such interventions or omissions that can hasten death. The moral perspective of patients, whose life is primarily affected, is rarely treated. There are several reasons for this. One of them is respect of patients’ autonomy, another is the fact that ‘patient’ is no professional role with a need of a professional ethos. Questions in the providers’ and regulators’ moral perspectives are for instance these: Is it permissible to offer assistance to suicide, if a patient wishes so? Is it acceptable (socially, morally, legally, politically etc.) that certain practices of assisted dying are tolerated? In the mindset underlying this predominant way of constructing the ethical questions, patients’ wishes are treated such as they were givens. The wishes need to be based on relevant ‘information’, and the information process is indeed a topic in medical ethics. But the development of a wish, or the conflicts it encapsulates are rarely looked at. Ultimately, the patients’ wishes remain outside the ethical discussion.
With the advent of empirical methodology and the inclusion of narrative approaches in biomedical ethics, this situation has started to change. The patient is currently (re-)discovered as a moral agent in medicine. We report from a study conducted at three different palliative care settings in Switzerland, with 120 analyzed semi-structured interviews with 30 terminally ill oncology patients, their close relatives and their caregivers. They were focused on the patients’ wishes in regard to their life’s end, and on the ethical implications of the corresponding decisions. To avoid bias, we didn’t narrow the study focus to a wish to hasten death, but interviewed patients with different sorts of ideas towards their dying. The data has been analyzed and interpreted using phenomenological and hermeneutical methodology.
Results show that terminally ill persons can experience and mean quite different things when expressing a wish to die and that deeper knowledge about these differences is indeed ethically relevant. Neither is a wish to die always a wish to hasten death, nor is it always stable, transports continuously the same meaning over the course of time, nor can it be understood outside personal relationships. The data also provide insight into complex, often ambivalent processes of decision-making at the end of life where patients constitute themselves as moral agents and as reflecting ethical subjects. We present several cases and argue that in order to better understand these processes with the view to a patient-centred medical ethics at the end of life, the patients’ voices, their own narratives, need to be heard. A wish to die is not only a wish that one’s life may end at some time and in a certain way, but also an articulation of sense, a reclaim of ethical meaning as a social and moral actor in the face the radical contingency of death.
Introduction to special session
Transplantation medicine has special political and ethical implications in situations of political conflict, in particular if donor-recipient relationships cross the borderlines of a conflict. Humanity in such situations can materialize in the gift of life and in the difficult organizational measures that are necessary for the transplantation. All acts involved, however, are inevitably also political acts that in a certain way relate to the conflict. Whether they are intended to or not, they are seen as answers to the conflict. These acts include the gift of tissue or organs, the way stories are told, the media coverage of success and failure, the images used, even the way the events become a topic in the social sciences or ethics.
What can we learn from the experiences in such cases? How can we study these practices fairly? Which effects can the results of the studies have? How can they be used for deepening or for alleviating the conflict? How can we do justice to the people involved, who suffer both from disease, loss, and bereavement? How can medical philosophy and medical ethics discuss these questions? - I will summarize the story of The Heart of Jenin as it is told in the film, and briefly develop a rough framework for the ethical and philosophical discussion.
Integrity and human cloning
The birth of Dolly the cloned sheep, in 1997, ignited a worldwide debate about the rightness and wrongness of human reproductive cloning. At present, most scientists agree that cloning poses risks of serious congenital anomalies and premature death to clones. The risks constitute a compelling argument against using the procedure on humans. However, even if, at some future time, the technology became safe and effective, many ethicists, lawyers and policymakers would still argue that it should be banned, because it is contrary to human dignity and integrity.
The aim of my presentation is to analyze the worthiness of moral and legal objection towards human reproductive cloning grounded in the right to integrity. This right is used as a main argument against the technology, in particular, in the Charter of Fundamental Rights of the European Union. Art. 3 of the Charter states that “everyone has the right to respect for his or her physical and mental integrity” (sec.1), and in the fields of medicine and biology the prohibition of the reproductive cloning of human beings must be respected (sec. 2, iv). It is also explicitly enshrined in the paragraph 1 of the WHO Resolution WHA51.10 (Ethical, scientific and social implications of cloning in human health).
Firstly, I will discuss what the right to integrity means and how it relates to the right to (genetic) identity as conceptualized in the existing international regulatory framework concerning new genetic and reprogenetic technologies? Using existing scientific and legal literature, I will create a matrix of the contemporary interpretations (senses) of the concept of human integrity, similar to the working model of human dignity developed by Steven Malby (Health and Human Rights, 2002 6(1):102-135). Next, I will test selected elements of human reproductive cloning against each of the integrity concepts contained in the matrix. Finally, I will argue that the concept of human integrity may provide a legitimate rationale for introducing a priori a total ban on human reproductive cloning only if the human integrity is understood as a collective human genetic identity and it can be proved that cloning will lead to the erosion of the "genetic heritage of mankind". At the end, I will comment on Norberto Nuno Gomesde Andrade’s criticism of the idea of a collective, static and heritable genetic identity (Human Genetic Manipulation and the Right to Identity: The Contradictions of Human Rights Law in Regulating the Human Genome, Scripted 2010, vol. 7, no 3: 430-452), and the relation between human dignity and integrity, and practical consequences of the conceptual distinction.
Sexuality education policies for youth: a value-neutral science-based only approach?
Education policies are a keystone to tackle the risks of pregnancy, HIV and sexually transmitted infections among adolescents. However, several authors have criticized the interference of ideology or beliefs in specific interventions applied to sexual education programs. For example, abstinence education is considered non-effective and based on moral and religious beliefs of their proponents. Conversely, there is a growing consensus supporting the so called “comprehensive” sex education programs based mainly supposedly on scientific evidence. A frequent opinion is that using scientific evidence instead of moral debates will help to definitely address sexual risk-taking by teens when public health decisions have to be taken.
The general aim of this paper is to explore why sexuality education policies might neither be neutral or only based on science. The following ideas will be applied to this issue.
The application of biomedical paradigms from evidence-based medicine to public health is necessary but insufficient. It is difficult to extrapolate evidence from clinical trials or meta-analysis into health policy because the contexts of new interventions also have to be taken into account. Science will frequently help policy makers to frame problems but will not necessarily provide a single and “objective” solution. Specific solutions come from a combination of systematic reviews and expert opinions, which involve judgment. The problem with consensus is the elimination of alternatives that may be valuable for the decision-making process of complex problems. A better alternative in health policy might be to articulate the broadest set of plausible interpretations, options and perspectives imagined by the best experts, and in line with scientific evidence, rather than forcing convergence to an allegedly unified idea supposedly only based on science.
It seems logical to think that public health policies should be as neutral as possible and therefore be based on objective measures of harms, benefits and effectiveness. However, facts are relevant to value judgments but they do not settle value disputes on their own. Health promotion policies necessarily include value judgments as well. These judgments relate to the way in which problems are defined and what is taken to be indicators of success. For example, neutrality is naïve in debates about contraception, where some see contraceptives as useful tools for ensuring the safety of sexually active teenagers, while others denounce contraception as licensing unhealthy and immoral behavior. Both perspectives can be confirmed using scientific studies.
Education and health promotion are related to health behaviors. The ethics of changing behaviors depends on which aspect is being targeted. There is a continuum from less to more controversial interventions. Attempts to modify lifestyles related to sexuality raise deep questions because they affect not only health but values that concern the whole person. Parents have different views as to what education is acceptable to influence adolescents’ sexual behavior. Discrimination is possible albeit using apparently neutral practices because persons with a given trait (religious or cultural) can end up disadvantaged with respect to their right to choose a specific education for their children.