Ethics of genetics
Key concepts: terminal states, clinical and biological death, "brain death", persistent vegetative states, resuscitation, active and passive
euthanasia, "social" euthanasia and "euthanasia of newborns", palliative medicine, hospice, personality, individual, body, "border situation", ethics, genetics, genomics, genome, gene therapy, prenatal diagnosis, eugenics, "new eugenics", transgene , nature, human, personality, freedom, genetic passport, artificial selection, biopolitics, totalitarianism, dignity of the individual, gene patenting, predictive medicine, the Human Genome Project.
Thematic plan of the seminar.
1. Understanding death and dying in various cultural and philosophical traditions.
2. The problem of human death criteria and moral and ideological understanding of personality. History of resuscitation. Biological and clinical death. The problem of brain death.
4. Psychology of terminal patients. The concept of E. Kübler-Ross “death as a “growth stage””. The right to the truth about the latest diagnosis. Palliative medicine.
5. Worldview foundations of "death support" The value of human life and the principle of autonomy human personality(metamorphoses of humanism). Definition, types and forms of euthanasia. The problem of suicide and euthanasia. Euthanasia in Nazi Germany. Legislative prohibition of euthanasia in Russia. Hospice movement against the legalization of euthanasia.
7. The problem of attitude to the dead body. Lessons in the history of pathological anatomy. Moral and ethical problems of autopsy.
8. History of genetics. International research project "Human Genome": features, results, prospects. “Universal Declaration on the Human Genome and on Human Rights” (UNESCO, 1997). Gene Patenting: An Ethical and Legal Assessment.
9. Ethical principles genomics:
a) privacy and confidentiality of genetic information(family, insurance companies, employers);
b) autonomy(voluntariness, awareness);
in) justice(incurable diseases, eugenics);
G) equal accessibility(free exchange of scientific information or
patenting);
e) quality(laboratory licensing and ethical review).
10. Therapeutic and predictive medicine - a paradigm shift. Ethical problems of applying the methods used by medicine for the diagnosis and correction of mutant genes (genetic screening and testing, genealogical method, prenatal diagnosis). Moral aspects of medical genetic counseling (directive and non-directive model).
11. Types of gene therapy - compensation for genetic defects (correction of a mutant gene) and the introduction of new properties into the cell (gene as a medicine). The degree of admissibility of interference in the human genetic apparatus. Genetic harm (changing the properties of existing organisms), genetic risk (the emergence of new dangerous organisms) and the problem of genetic security.
12. Ethical problems of germ cell gene therapy. Eugenics. Liberal and conservative assessment of the possibilities of changing and (or) improving human nature. Moral and ethical aspects of gene therapy of somatic cells. “Do No Harm” - the rationale for the priority of the therapeutic effect of gene therapy intervention over the possibility of causing damage. Adverse effects of somatic cell gene therapy.
13. Transgenic animals and plants. "Green revolution". Law of the Russian Federation “On state regulation in the field of genetic engineering activities” (1996).
14. Ethical corridor of stem cell transplantation technologies. Embryo Status and Moral and Ethical Problems of Therapeutic Cloning. Position of Christian Churches in Europe.
Topics of reports:
1. Resuscitation and moral and ethical problems of "dying management".
2. Medical criteria for human death: moral problems.
3. The problem of the equivalence of brain death and human death.
4. Influence of the patient's depressive self-assessment on the doctor's confidence in the hopelessness of the cure.
5. Truths and lies about "easy death" in medicine and the media (media). (How and why does the media create the image of an “easy death”?)
6. Professional ethics as a form of self-defense of the doctor's personality.
7. The moral responsibility of the doctor "in the face of death."
8. Roman F.M. Dostoevsky "Crime and Punishment" and problems of modern bioethics.
9. The problem of experiencing death in the work of L. N. Tolstoy “The Death of Ivan Ilyich”.
10. The phenomenon of “criminal statehood” (Karl Jaspers on the legalization of euthanasia in Nazi Germany).
12. Gene therapy: hopes and dangers.
13. International documents on ethical and legal regulation of human genome research.
14. Treatment with genes - fantasy or reality?
15. XXI century medicine and bio-power.
16. Eugenics as a form of solving the problem of quality and quantity of people.
7. Positive and negative eugenics.
8. The power of biotechnology and biopolitics.
Abstract topics:
1. "Physics" and "metaphysics" of death.
2. Euthanasia: the history of the problem.
3. The right to the truth about the latest diagnosis.
4. Attitude to the dead body in philosophical anthropology and pathological anatomy.
5. Death and dying as a stage of life.
6. Criteria for the death of a person and the status of a person.
7. History and logic of eugenics
8. Genomics under the “ethical microscope”.
9. Human cloning and the crisis of European humanism.
10. "Green Revolution": today and tomorrow.
11. Transgenic organisms and ecological catastrophe.
12. Moral assessment of biotechnology.
13. Therapeutic cloning in the context of the spiritual and moral dilemma "God-manhood-man-God".
Test questions:
1. What distinguishes and unites the concepts: “genome”, “genomics”, “gene therapy”, “medical genetics”?
2. Why and how is “predictive medicine” related to bioethics and biopolitics?
3. What is the moral and ethical inadmissibility of "artificial selection" in relation to a person?
4. What is the “genetic risk” of gene therapy procedures?
5. Can genetic engineering be ethically acceptable and genetically safe?
6. What is the difference between “old” and “new” eugenics?
7. List five ethical principles for the study of the human genome.
11. What is the content of the principle equal accessibility?
13. What is the basis of the ethical argumentation of the inadmissibility of germ cell gene therapy?
14. What is preferable from the point of view of the ethics of science - the right of ownership of the discovery or the right to free access to scientific discoveries?
15. Under what conditions can a “genetic passport” restrict a person's freedom?
16. What are the moral and ideological grounds for the liberal recognition of the acceptability of human cloning?
17. What is the motivation cognitive activity conservative scientist?
18. List specific examples of "utopian activism" in the history of science.
Is euthanasia prohibited by law in Russia, if so, in what documents?
19. What are the main arguments of the opponents of euthanasia.
20. What are the criteria currently used to ascertain the death of a person in Russia?
21. What are hospices and are there any in Russia?
22. What types of care are provided to patients in the hospice?
23. Is it legal for a doctor to give a terminally ill patient a diagnosis?
24. Name the main arguments of the opponents of perjury in medicine.
25. What are the limits of reliability of an unfavorable medical prognosis and diagnosis, considered as grounds for active euthanasia?
Mandatory literature:
1. I.V. Siluyanova. Bioethics in Russia: values and laws. M. 2001., pp. 101-120.
2. Introduction to bioethics. Ed. B.G. Yudin, P.D. Tishchenko. M.1998.
3. V.I. Ivanov, V.L. Izhevskaya, E.L. Dadali. Bioethical problems of medical genetics. / Medical law and ethics. 2002, no. 4, p. 41-67.
4. Favorova O.O., Kulakova O.G. Bioethical problems of gene therapy. / Medical law and ethics. 2002, No. 4, pp. 87-101.
5. Federal Law “On a temporary ban on human cloning” dated May 20, 2002, No. 54-FZ.
6. Fundamentals of the legislation of the Russian Federation on the protection of the health of citizens of 22.07.1993. No. 5487-1
7. Federal Law "On State Regulation in the Field of Genetic Engineering Activities" dated 05.07.96 86-FZ
8. Ethical and legal aspects of the project "Human Genome" (International documents and analytical materials). M.1998.
9. Ivanov V. I., Izhevskaya V. L. Human genetics: ethical problems of the present and future. Problems of Eugenics / Biomedical Ethics. Ed. Pokrovsky V. I. M., Medicine, 1997.
10. Grishina E. M., Ivanyushkin A. Ya., Kurilo L. F. Moral and ethical aspects of determining and choosing the sex of the fetus / / Medical Law and Ethics, M. - 2001, - No. 2, - p. 40-48.
Additional literature:
1. Altukhov Yu. P. About human cloning / Orthodoxy and problems of bioethics. Ed. prof. Siluyanova I. V. M., 2001, p. 67-71.
2. Balashov N. New achievements in the field of genomics: the view of an Orthodox Christian. / Medical Law and Ethics. No. 4, 2000, p. 39-50.
3. Zelenin A.V. Gene therapy: ethical aspects and problems of genetic safety. / Genetics., 1999, Vol. 35, pp. 1605-1612.
4. Obukhov M. Will humanity cross the “fatal line”? / Orthodoxy and problems of bioethics. Ed. prof. Siluyanova I. V. M., 2001, - p. 64-67.
5. Fundamentals of the social concept of the Russian Orthodox Church. Chapter XII.
Bioethics. / Newsletter of the Department for External Church Relations of the Moscow Patriarchate. 2000, no. 8, p. 77-80.
6. Tishchenko P. D. Bio-power in the era of biotechnology. M., 2001, 177 p.
7. Favorova O.O. Treatment with genes - fantasy or reality? / Sorovsky educational journal. 1997, No. 2, p. 21-27.
eight. . Elisabeth Kübler-Ross. About death and dying. Per. from English. K. "Sofia", 2001. 320 p.
9. Voyno-Yasenetsky V.F. Essays on purulent surgery. M., Medgiz., 1946.
10. Andrey Kuraev, deacon. Christian philosophy and pantheism. M., 1997. p. 23.
11. Heidegger M. Overcoming metaphysics / Time and being (articles and speeches). M., 1993, p. 189-190.
12. Barbour Yen. Religion and science: history and modernity. M., 2000, p. 229.
13. Rozanov V.V. Regarding one concern, Mr. L.N. Tolstoy / The Legend of the Grand Inquisitor F.M. Dostoevsky. M., 1996.
14. Anatoly (Berestov) hieromonk. Medical and moral problems of euthanasia. / Orthodoxy and problems of bioethics. M., Life, 2001, p. 23-27.
15. Berdyaev N.A. Experience of Eschatological Metaphysics / The Kingdom of the Spirit and the Kingdom of Caesar. M., 1995.
16. Lossky V.N. Theological concept of the human person / Theology and Theophany. M., 2000.
17. Florovsky George. Metaphysical premises of utopianism / The Way, No. 4. Paris, 1926,
Lesson 5.
Moral problems of organ and tissue transplantation.
Ethical and legal aspects of psychiatry and psychotherapy.
Key concepts: transplantation, donor, recipient, (homo-), (allo-), transplant, commercialization, brain death, persistent vegetative state, personality, organ explantation, routine sampling, presumption of consent (“unsolicited consent”), presumption of disagreement (“solicited consent”) ”), “donor card”, “organ donation”, waiting list, histocompatibility, xenotransplantation, rejection, xenozoonosis, fetal tissues, nonviolence, utilitarianism, altruism psychiatry, psychology, consciousness, unconsciousness, psychopathology, personality development, worldview, capacity, involuntary / forced hospitalization, human rights, "punitive psychiatry", criminal and civil law, psychotherapy, personality, etiology of psychopathy, deviation, sexopathology, "sexual revolution", drug addiction, classification of psychopathologies..
Thematic plan of the seminar.
1. Transplantation: history of development. The main ethical problems of transplantation. Legal contradictions in domestic legislation and
their ethical grounds (Criminal Code of the Russian Federation (Article 120), Law of the Russian Federation “On Transplantation of Human Organs and (or) Tissues” (1993), Law “On Burial and Funeral Business” (1996), international documents).
2. The problem of commercialization of transplantation. Moral and ethical grounds for the ban on the sale and purchase of human organs and (or) tissues.
3. Development of neuroresuscitation and formation of criteria for brain death. The definition of "brain death": medical (level), philosophical, moral, ethical and legal problems. Persistent vegetative states. Precedents for the rehabilitation of patients with persistent vegetative states. The specifics of the attitude of staff towards patients in a persistent vegetative state and their relatives.
4. Basic ethical and organizational requirements (principles) to ascertaining the death of a person according to the criteria of brain death: principle unified approach, principle collegiality, principle organizational and financial independence of brigades.
5. Ethical principles of explantation (withdrawal) of organs and tissues from a corpse. Types of regulation: routine fence, presumption of consent, presumption of disagreement. Arguments of supporters of the presumption of disagreement.
6. Basic ethical and legal principles of organ harvesting from a living healthy donor. Donor rights.
7. Problems of distribution of donor organs. Medical and ethical criteria for a fair distribution of donor organs (waiting list): histocompatibility, urgency, priority.
8. Xenotransplantation long-term risk assessment. Medical reasons for not using animal organs.
9. Moral and ethical aspects of the use of organs from incompetent donors (children, mentally ill persons) and donors with a sharp restriction of freedom of choice (prisoners sentenced to death).
10. Moral and ethical aspects of the unacceptability of the use of fetal tissues in transplantology.
11. Psychopathology and culture. Features of psychiatry as a medical discipline. Significance of the sociocultural context for psychiatry and psychotherapy. “The image of a person” and the concept of “illness” in psychiatry and psychotherapy. The meaning of psychiatric explanatory concepts (mythological, mechanistic, energy, organic, mental theories). Natural science (biological, anatomical and physiological) model in psychiatric thinking and the formation of scientific psychiatry. Worldview and the problem of the etiology of mental illness ("psychopathy", "obsession", "viciousness", "foolishness", "bliss", "wretchedness").
12. Features of the relationship between the doctor and the patient in psychiatry and psychotherapy. Patient incompetence and vulnerability. Physician's personal responsibility. Features of the “do no harm” principle in medical interventions in psychiatry and psychotherapy.
1Z. Freud on the specifics of the relationship between a doctor and a patient in psychiatry (the concepts of “transfer” and “countertransfer”). The specifics of medical secrecy in psychiatry. Mercy and respect for the human dignity of persons with mental disorders. The concept of “professional independence” and legal guarantees for the protection of the professional independence of a psychiatrist.
14. Abuse of psychiatry. Instruction of the Ministry of Health, the Ministry of Internal Affairs, the Ministry of Justice, the Prosecutor General of the USSR, 1948 “On the procedure for the application of compulsory treatment and other medical measures in relation to mental patients who have committed a crime.” The concepts of "political psychiatry", "punitive psychiatry", "independent psychiatry". Forensic psychiatric examination.
Law of the Russian Federation “On psychiatric care and guarantees of the rights of citizens in its provision” (1993) Moral and ethical aspects of consent and refusal of psychiatric care. Grounds for hospitalization and involuntary treatment. Rights of a patient in a psychiatric hospital (Article 37).
15. Ethical problems of medical sexology and sexologists. The role of moral and ideological orientations in understanding the "norm" and "pathology" of sexual behavior. International Classification of Diseases 8th (1965), 9th 9th (1975), 10th (1993) Revision: the concepts of “sexual perversion” and “sexual preference”. Two European sexual revolutions. Mental health and moral culture.
16. Drug addiction. Moral and ethical foundations and psychiatric methods of overcoming drug addiction. Modern mass culture and drugs. Christianity as a spiritual and practical antidote to drug addiction.
Topics of reports:
1. 1. Contradictions of legal regulation of transplantation and their ethical grounds.
2. Medical criteria for the death of a person and the moral status of a person.
3. Persistent vegetative states and brain death: the problem of equivalence.
4. Ethical and legal problems of the distribution of donor organs and ways to solve them.
5. Comparative characteristics presumptions of consent ("unsolicited consent") and presumptions of disagreement ("solicited consent").
6. World experience in solving the problem of graft removal from living and deceased donors.
7. Moral problems of searching for a “potential donor”.
8. Danger of reification of human organs and tissues in transplantology.
9. Materialism in psychiatry.
10. Depressive disorders in the light of moral anthropology.
11. Personality structure and psychosomatics.
12. Is there a crisis in the relationship between the doctor and the patient?
13. Counseling and psychotherapy: is commonality possible?
14. Principles of organization of monastic counseling. Constantinople hospitals.
15. The first and last classifications of psychoses - a comparative analysis.
16. Forensic psychopathology
17. The ideological "testament" of Pinel.
18. Spiritualism on the etiology of psychoses.
19. The dispute between "psychics" and "somatics".
20. The lack of unity of "scientific" views as a methodological and ethical problem of psychology, psychiatry and psychotherapy.
21. Lombroso and criminal anthropology (genius and insanity).
22. “Antipsychiatry” is a cultural phenomenon of the 20th century.
23. K. Jaspers and the basic concepts of “general psychopathology”.
24. Modern theories of personality psychopathology.
Abstract topics:
1. Ethical problems of transplantology.
2. The principle of utility in utilitarianism.
3. Commercialization of transplantology and the principle of justice.
4. The problem of the relationship between social and biological in human death.
5. Xenotransplantology: medical and ethical problems and prospects.
6. Psychotherapeutic pluralism as an ethical problem.
7. Ethics and philosophy of psychopathology.
8. Methodological role of the ethical and philosophical worldview in psychiatry.
9. The essence of personality as the main problem of psychopathology.
10. Modes of scientific character in psychiatry.
11. "The image of man" in modern psychotherapy.
12. “Political psychiatry” and “independent psychiatry” are reasons for incompatibility.
13. Europe: two sexual revolutions.
14. Drug addiction as a form of personality psychopathology.
15. Humanitarian and natural science paradigms in psychiatry.
Test questions:
1. What are the main legal documents regulating transplantation in Russia?
2. Who performed the world's first successful human heart transplant?
3. Is it permissible, according to our domestic and foreign legislation, to buy and sell human organs and (or) tissues?
4. 4. What are the criteria for the death of a person (tradition and innovation)?
5. Are the concepts of "persistent vegetative state" and "brain death" equivalent?
6. What are the three main ethical and organizational principles that should be followed when ascertaining the death of a person according to the criteria of brain death?
7. What is the presumption of consent and the presumption of disagreement of the donor?
8. What kind of presumption is the most ethically acceptable?
9. What kind of presumption is legally fixed in Russia?
10. Is it possible to use organs and tissues of a living healthy donor in Russia, if “yes”, what are the sufficient (mandatory) conditions that must be met?
11. What criteria underlie the decision made by physicians when distributing donor organs to recipients?
12. Name two main reasons why xenotransplantation cannot go beyond the scope of a scientific experiment and become a clinical practice.
13. What is the moral evil of trafficking in human organs?
14. Is it logical to say that a person retains the right to his body after death?
15. Is it possible to provide a natural scientific justification for donation?
16. Is it moral to extend the life of some people at the expense of others?
17. Does death have an ethical meaning?
eighteen. . How does the dependence of psychiatry, psychology and psychotherapy on the sociocultural context manifest itself? Give examples.
19. Why is the understanding of personality a major problem in psychopathology?
20. What are the limitations of the natural science model of psychiatric thinking?
21. What is the main difference between psychiatry and other medical disciplines?
22. Does psychology study the “soul” of a person?
23. List the features of the relationship between the doctor and the patient in psychiatry.
24. Is it possible to carry out property transactions with a patient when providing psychiatric care?
25. List the rules prohibiting intimate relationships between a doctor and a patient (AMA).
26. Expand the content of the concept of "professional independence of a psychiatrist."
27. List the rights of a patient in a psychiatric hospital (Article 37 of the Law of the Russian Federation “On Psychiatric Care”).
28. Medical secrecy in psychiatry and surgery: what is the difference?
29. Name the permissible and possible forms of cooperation between a psychiatrist and a priest.
30. What is the difference between the concepts of “sexual perversion” and “sexual preference”?
31. Is it permissible to provide pastoral assistance to a drug addict in psychiatric treatment? Why?
Mandatory literature:
1. Siluyanova I. V. Bioethics in Russia: values and laws. M., 2001, pp. 161-174.
2. Law of the Russian Federation "On transplantation of human organs and (or) tissues" dated 22.12.1992. No. 4180-1.
3. Instructions for ascertaining the death of a person based on the diagnosis of brain death. / Medical Law and Ethics, 2000, No. 3, p. 6-14.
4. Shumakov V. I., Tonevitsky A. G. Immunological and physiological problems of xenotransplantation. M., Science. 2000. 144 p.
5. Introduction to bioethics. Ed. B.G. Yudin, P.D. Tishchenko. M.1998.
6. Sgreccia Elio, Tambone Victor. Bioethics (textbook). M., 2002, pp. 322-345.
7. Mirsky M. B. History of Russian transplantology. M., Medicine. 1985.
8. Stetsenko S. G. Regulation of donation as a factor in the regulation of transplantation. /Medical Law and Ethics. 2000, no. 2, p. 44-53.
9. Salnikov V. P., Stetsenko S. G. Transplantation of human organs and tissues: the problem of legal regulation. St. Petersburg, 2000.
10. Council on Ethical and Judicial Affais AMA - Ethical Issues in the Distribution of Organs for Transplantation. Arch.Jntern. Med. 1995, 155, 29-40.
11. Federal Law “On burial and funeral business” dated 12.01.1996, No. 8-FZ.
12. Constitution of the Russian Federation (12.12.1993)
13. Fundamentals of the legislation of the Russian Federation on the protection of the health of citizens of 22.07.1993. No. 5487-1
14. Law of the Russian Federation "On psychiatric care and guarantees of the rights of citizens in its provision" dated 02.07.1992. No. 3185-1
15. Law of the Russian Federation "On medical insurance of citizens of the Russian Federation" dated 28.06.1991 No. 1499-1
16. Federal Law "On Narcotic Drugs and Psychotropic Substances" of 08.01.1998 No. 3-FZ
17. Korkina M.V., Lakosina N.D., Lichko A.E. Psychiatry. M. Medicine. 1995
18. Clinical psychiatry. Translation from English. supplemented. Ch. editor T.B. Dmitriev. M .: "Geotar-medicine". 1998.
19. A. Kempinski. Existential psychiatry. M.-S.-Petersburg. 1998.
20. T.B. Dmitrieva Psychiatry as an object of ethical regulation./ Actual problems of bioethics in Russia. Materials of the International scientific-practical conference. M., -2000, - p. 58-68.
21. Ethics of practical psychiatry. Guide for doctors. Ed. prof. V.A. Tikhonenko and A.Ya. Ivanyushkin. M. RIO GNTSSiSP them. V.P. Serobsky. 1996.
22. Jaspers K. General psychopathology. M. Practice. 1997.
23. Bryazhnikov N.S. Ethical problems of psychology. Teaching aid. MPSI, M., 2002.
Additional literature:
1. 1.Transplantology. Management. Ed. Academician V. Shumakova. M. 1995.
2. Belyaev V. Head of Professor Dowell. Amphibian Man. M. 2002.
3. Bulgakov M. Heart of a dog. Sobr. op. in five volumes. T. 3, M., 1989, pp. 119-211.
4. Fundamentals of the social concept of the Russian Orthodox Church. Chapter XII. Bioethics./ Newsletter of the Department for External Church Relations of the Moscow Patriarchate. 2000, No. 8, pp. 80-81.
5. Mironenko A. Cannibalism at the end of the twentieth century. Transplantation: ethics, morality, law./ Medical newspaper. No. 11, November, 2000, p. 16-17.
6. Avdeev D.A. Spiritual essence of mental disorders. M. Russian chronograph. 1998.
7. Bratus B.S. Christian and secular psychotherapy. / Moscow Psychotherapeutic Journal. No. 4, 1997, pp. 7-20.
8. Spiritual foundations of drug addiction. Ed. hierom. Anatoly (Berestov). M.2002.
9. Kannibakh Yu. History of psychiatry. Moscow. MDG IHL VOS.1994.
10. Markova N.E. Cultural intervention. M. 2001.
11. Melekhov. D.E. Psychiatry and problems of spiritual life./Psychiatry and actual problems of spiritual life. M. St. Philaret Moscow Higher Orthodox Christian School. 1997.p.5-62.
12. Metropolitan Anthony of Surozh. Spirituality and sincerity. / Moscow Psychotherapeutic Journal. No. 4, 1997s. 27-33.
13. Mikhailov G. Our soul. Ontology of psychic reality. St. Petersburg, 1999.
14. Fundamentals of the social concept of the Russian Orthodox Church. Chapter XI. Health of the individual and the people. / Newsletter of the Department for External Church Relations of the Moscow Patriarchate. 2000, no. 8.
15. Prokopenko. A.S. Mad psychiatry. Secret materials on the use of psychiatry in the USSR for punitive purposes. M. "Top Secret". 1997.
16. Siluyanova I.V. Bioethics in Russia: values and laws. M. Chief doctor. 2002. pp. 120-138.
17. Foucault M. The history of madness in the classical era. St. Petersburg. 1997.
Appendix 1
Glossary
abstinence- abstinence from the use of psychoactive substances.
advocacy- actions and measures that influence people who make socially significant decisions.
Questionnaire- a type of questionnaire used to collect data in a public opinion poll. The questionnaire is a document containing a set of questions formulated and interconnected according to certain rules.
Outreach work(eng. outreach - external contact) - a form of promotion of services provided by medical services and public organizations, to the target community.
Safe conditions for humans- the state of the environment in which there is no danger harmful effects its factors per person;
Secondary exchange of injection equipment- a form of work in which a significant amount of syringe exchange occurs through the so-called "secondary networks". These can be pharmacies and health clinics or, more commonly, networks of project volunteers who are drug users.
State sanitary and epidemiological rules and regulations - regulatory legal acts that establish sanitary and epidemiological requirements (including criteria for the safety and (or) harmlessness of environmental factors for humans, hygienic and other standards), non-compliance with which creates a threat to human life or health, as well as the threat of the emergence and spread of diseases;
State Sanitary and Epidemiological Supervision– activities to prevent, detect, suppress violations of the legislation of the Russian Federation in the field of ensuring the sanitary and epidemiological welfare of the population in order to protect the health and environment of adults and children.
Narcotics Anonymous groups- a social movement of self-help groups that aim to recover from drug addiction. Founded by analogy with the earlier movement "Alcoholics Anonymous". Drug addiction treatment in groups is carried out according to the "12 Steps" program - a system of recovery based on the recognition of one's addiction and communication with the "Higher Power".
Mutual Aid Group- regularly gathering groups of people united by a common life problem or situation. The organizers and responsible persons in the group are the participants themselves. The group can be led by a facilitator who must also share the problem or situation that brings the other members together. Self-help groups recognized effective method to improve the quality of life and develop the activism of people with chronic diseases belonging to stigmatized groups.
support groups- regularly gathering groups of people united by a common problem or situation. They serve to exchange experience, information and provide support. The organizer of such groups is a public or state organization. The group is led by a professional facilitator, usually a member of the host organization. Support groups are considered to be an effective method for improving the quality of life of people, especially those living with chronic diseases and those belonging to stigmatized groups.
Risk group (At - risk population).- a group whose members are vulnerable or likely to be harmed by certain medical, social circumstances or exposures environment; the group in which the implementation or implementation of the intervention program is planned.
Group social- a relatively stable set of people united by a common interest, as well as cultures, values and norms of behavior that are in more or less systematic interaction.
Volunteer (volunteer)- a person who voluntarily, i.e. of his own free will, he decided to devote part of his life to other people, helping them cope with life's difficulties. Volunteers are people of various professions, ages, social strata who have realized that there are problems in the world that can only be dealt with by everyone together.
Volunteer- a person who voluntarily participates in any activity that does not provide for material reward. In public and state organizations - a person who works in them without pay. Volunteering is usually associated with ideological and social motives.
Discrimination- unreasonable restrictions on the rights and freedoms of people, usually because of their belonging to a group stigmatized in society. It is a direct consequence of stigma.
Access to care (access to care) - the degree of proximity to the population of the necessary health services and the adequacy of satisfaction of patients, taking into account their demographic characteristics and incomes, with medical care (in terms of time, volume and quality).
Morbidity- an indicator of public health that characterizes the prevalence, structure and dynamics of registered diseases among the population as a whole or in its individual groups for a certain period of time (year) and serves as one of the criteria for evaluating the work of a doctor, medical institution, health authority.
Illness (illness)- any subjective or objective deviation from the normal physiological state of the body.
task- a measurable state or level of an object (process, phenomenon, system) at each stage of achieving the final goal, which has an appropriate justification and time limits.
Health care (in the narrow,departmental meaning)- the totality of all industry resources and achievements of medical science in the form of clinical and organizational technologies aimed at the prevention and restoration of health and ability to work.
Health care (as a system of measures to preserve, strengthen and restore the health of the population)- a system of socio-economic and medical measures, the purpose of which is to preserve and improve the level of health of each individual and the population as a whole and to make a positive contribution to the development of social production and the creation of the national income of the country.
Performance indicators - indicators that allow evaluating the organization and provision of medical care, as well as the effectiveness and efficiency of medical care (financial stability of institutions, the use of qualified personnel, patient satisfaction, etc.)
Quality indicators of medical care (quality indicator)- indicators that are used to characterize both the positive and negative aspects of medical activity, its individual stages, sections and directions (the frequency of repeated hospitalizations, the proportion of doctors and health facilities that carry out clinical guidelines, etc.).
Innovation - development and implementation of various kinds of innovations that generate significant changes in social practice.
Integration- the process of combining the efforts of various subsystems (divisions) to achieve the goals of the organization.
Interview– a method of collecting social data at the individual level.
Customer- a legal or natural person using the services of another natural or legal person. In support services, customers are all people who receive service services directly or remotely, for example, when reading printed materials. In support services for people with HIV, clients are also sexual partners, close relatives and relatives of HIV-positive people.
commercial sex- the provision of sexual services for payment to one or more partners. In any case, the sexual partner is constant.
Legalization- a policy aimed at the partial or full legalization of certain drugs.
Marginalization- a policy that desocializes a group of drug users.
Mobile syringe exchange- a mobile station located in a bus or minibus. Moves along a certain route and schedule to certain points in the city with a large concentration of drug users. Provides access to Harm Reduction services.
Monitoring- purposeful activity associated with constant or periodic observation, assessment and forecast of the state of the observed object (process, phenomenon, system) in order to develop it in the desired direction.
2) the process of tracking the state of a system or phenomenon by certain methods.
Monitoring (controlling) quality (quality control)– application of effective methods (tools), measures and statistical methods for measuring and predicting quality.
Motivation- the process of motivating a person to act in order to achieve goals.
Addiction- a disease caused by dependence on a narcotic drug or psychotropic substance.
drug scene- a concept based on the analysis of the most common drugs, the presence of traffic, the socio-demographic characteristics of the community of drug users, the presence of medical, social, etc. services for drug users, economic situation, the epidemiological situation in a particular region.
- 36.84 KbFederal State Autonomous Educational Institution of Higher Professional Education
"BELGOROD STATE NATIONAL RESEARCH UNIVERSITY"
Department of Psychiatry, Narcology, Clinical Psychology
Abstract on the topic:
"Right to the truth about the latest diagnosis"
Performed
Student group 091209
Cherevatova Olga Grigorievna
checked
Mitin Maxim Sergeevich
Belgorod 2012
Introduction………………………………………………………………………. 3 page
Perjury…………………………………………………………….. 5 pages
Psychology of terminal patients………………………………………… 5 pages
Points for and against"…………………………………………………. 7 page
The sequence of stages of the patient's reaction……………………………... 8 pages
How to and how not to behave with a dying patient………. 10 pages
Conclusion…………………………………………………… ………………. 12 pages
List of used literature………………………………………… 13 pages
Introduction
The domestic tradition of not informing a seriously ill patient about his diagnosis, based on the medical tradition of sparing the patient's psyche, has been debatable for many years. The legislator does not dare to put an end to this issue. Doctors, relatives and even friends can know about a fatal diagnosis, and the patient himself often remains in the dark until the last moment. What is more from such silence - benefit or harm - neither the attending physicians, nor psychologists, nor deontologists (specialists in medical ethics) can unambiguously say. On one side of the scale - the right of a person to know what is happening to him, on the other - the negative consequences of such knowledge, characteristic of representatives of our culture with its fear of death. The decision often remains on the conscience of the doctor.
In many areas of medicine, patient awareness is one of the conditions for successful treatment. Only by informing the patient of the diagnosis, one can hope for the correct treatment outside the health facility, adherence to the regimen, changing the lifestyle to one that will contribute to his recovery. But how to inform the patient of an oncological diagnosis, so as not to finish him off with the terrible truth? And although any patient over the age of 14 has the right to full information about their health status and diagnosis, it is often impossible to get a truthful answer even in response to a direct question: “Doctor, do I have cancer?”.
In the West, the problem of silence has been radically solved - to inform the patient about everything that concerns his health, even in the case of hopeless diseases, if the very fact of reporting a diagnosis does not give instant complications. Simply put, no one will immediately tell a person with a myocardial infarction a week ago about a freshly diagnosed carcinoma (one of the forms of cancer), even in America, which is concerned about the rights of the patient. But from those patients whose risk of dying this very hour is not documented, nothing will be hidden.
In theory, it is possible NOT to report the diagnosis only if the patient himself does NOT want to know it, and then if the disease is NOT dangerous to others. But for the humanism of physicians, there is a backlash in the fundamentals of the legislation of the Russian Federation on health protection: the actions of a doctor to conceal a diagnosis can be considered lawful if three conditions are met at the same time: this is done to free the patient from moral suffering in the event of a fatal illness that does not endanger the health of other people . That is, cancer in the last stage with metastases for the benefit of the patient can be called anything, but any infectious disease is not.
However, the problem is that there is no approach that will be a boon for everyone. And here comes into force not only the medical aspect (reflection of the news on the state of health, possible refusal of therapy or, on the contrary, more conscious treatment planning, etc.) aspect, but also the moral and ethical one. Which is higher: the right of a person to know that he is dying, or the false maintenance of hope in him in an attempt to ease the last days?
"Perjury"
The duty of "perjury" in relation to incurable and dying patients was a deontological (from the Greek deon - duty, logos - word, doctrine) norm of Soviet medicine. The doctor's right to "perjury" in order to ensure the right of a terminally ill person to ignorance was considered as a feature of professional medical ethics in comparison with universal morality.
The basis of this feature are quite serious arguments. One of them is the role of the psycho-emotional factor of faith in the possibility of recovery, maintaining the struggle for life, and preventing severe spiritual despair. Since it was believed that the fear of death brings death closer, weakening the body in its fight against the disease, the communication of the true diagnosis of the disease was considered tantamount to a death sentence. However, there are cases when lying did more harm than good. Objective doubts about the well-being of the outcome of the disease cause anxiety in the patient and distrust of the doctor. The attitude and reaction to the disease in patients are different, they depend on the emotional and psychological make-up and on the value-worldview culture of the person.
Is it possible to open a diagnosis to a patient or relatives? Maybe we should keep it a secret? Or is it advisable to inform the patient of a less traumatic diagnosis? What should be the measure of truth? These questions will inevitably arise as long as healing and death exist.
Psychology of terminal patients
At present, numerous foreign studies of the psychology of terminal patients (terminus - end, limit) are available to Russian specialists. The conclusions and recommendations of scientists, as a rule, do not coincide with the principles of Soviet deontology. Studying the psychological state of terminal patients who learned about their fatal illness, Dr. E. Kübler-Ross and her colleagues came to the creation of the concept of "death as a stage of growth." Schematically, this concept is represented by five stages through which a dying person (usually an unbeliever) passes. The first stage is the “denial stage” (“no, not me”, “this is not cancer”); the second stage is “protest” (“why me?”); the third stage is "request for a delay" ("not yet", "a little more"), the fourth stage is "depression" ("yes, I'm dying"), and the last stage is "acceptance" ("let it be") .
The stage of "acceptance" attracts attention. According to experts, the emotional and psychological state of the patient at this stage changes fundamentally. The characteristics of this stage include such typical statements of once prosperous people: “In the last three months I have lived (a) more and better than in my entire life.” Surgeon Robert Mack, a patient with inoperable lung cancer, describing his experiences - fear, confusion, despair, finally states: “I am happier than I have ever been before. These days are now truly the best days of my life.” One Protestant priest, describing his terminal illness, calls it "the happiest time of my life." As a result, Dr. E. Kubler-Ross writes that “I would like cancer to be the cause of her death; she does not want to lose the period of personal growth that terminal illness brings with it. This position is the result of understanding the drama of human existence: only in the face of death does a person discover the meaning of life and death.
The results of scientific medical and psychological research coincide with the Christian attitude towards a dying person. Orthodoxy does not accept perjury at the bedside of a hopelessly ill, dying person. “Hiding information about a serious condition from a patient under the pretext of preserving his spiritual comfort often deprives the dying person of the opportunity to consciously prepare for death and spiritual comfort gained through participation in the sacraments of the Church, and also darkens his relationship with relatives and doctors with distrust.”
Arguing that the attitude of a doctor towards incurable and dying patients cannot be simply scientific, that this attitude always includes compassion, pity, respect for a person, readiness to alleviate his suffering, readiness to prolong his life, Metropolitan Anthony of Surozh draws attention to one "unscientific » approach - on the ability and "willingness to let a person die."
As practice shows, doctors are divided into 2 camps: those who believe that it is not worth telling the truth about a fatal diagnosis, and those who believe that such information will benefit the patient. As a rule, doctors use the following arguments in their judgments:
Arguments for
- When there is no need to hide anything from the patient, it is easier for specialists to plan treatment. And the patient has the opportunity to make a conscious choice of clinic and doctor.
- If the patient knows his diagnosis, it is easier to convince him of the need for radical treatment.
- Fighting a specific enemy is often more effective than fighting against who knows what.
- The patient has the opportunity to receive specialized psychological help such as cancer support groups.
- There is more trust in relationships with relatives who do not have to pretend that everything is in order.
- The patient has the ability to manage his life.
Arguments against
- Unpredictable consequences of psychological shock.
- The negative impact of self-hypnosis on the patient's condition.
- The inability to adequately assess the patient's condition (children, the elderly, patients with mental disorders).
Unfortunately, no matter what arguments for and against are given, doctors and relatives need to consider each situation with a potentially sad outcome individually, taking into account the characteristics of the character, condition, desire of a person to know or not to know the truth and prospects for treatment. But at the same time, it is better to leave the decision anyway to those whose life hangs in the balance. Find out whether a person wants to know or not to know the terrible truth can be done in a roundabout way. And if he wants, he must know her. And what to do with this truth is the personal choice of the patient. Will he go for a hopeless operation, refuse to be treated, commit suicide, open a cat shelter with the last money, want to make peace with his enemies, or pretend that nothing happened.
To speak or not to hush up the diagnosis is a problem, in the solution of which it is necessary to proceed from the aspirations of the patient himself, and not from the convenience of those around him. The task of relatives in such a situation is to help and support, and a person is free to end his days as he sees fit.
Patients' reactions to a doctor's report that they have a fatal illness can be varied. It is customary to divide them into a sequence of stages.
Stage one: denial and isolation.
"No, not me, it can't be!" Such initial denial is inherent in both patients who were told the truth at the very beginning of the development of the disease, and those who guessed the sad truth on their own. Denial - at least partial - is inherent in almost all patients, not only in the first stages of the disease, but also later, when it appears from time to time. Denial acts as a buffer against unexpected shock. It allows the patient to collect his thoughts, and later use other, less radical forms of protection. Denial is most often a temporary form of defense and is soon replaced by partial humility.
Stage two: anger.
The first reaction to the terrible news is the thought: “It’s not true, this cannot happen to me.” But later, when a person finally understands: “Yes, there is no mistake, it really is,” he has a different reaction. Fortunately or unfortunately, very few patients are able to cling to the fictitious world in which they remain healthy and happy to the very end.
When the patient is no longer able to deny the obvious, rage, irritation, envy and indignation begin to overwhelm him. The next logical question arises: “Why me?” In contrast to the denial stage, the anger and rage stage is very difficult for the patient's family and hospital staff to deal with. The reason is that the patient's indignation spreads in all directions and at times spills out on others quite unexpectedly. The problem is that few people try to put themselves in the shoes of the patient and imagine what this irritability might mean. If the patient is treated with respect and understanding, given time and attention, his tone of voice will soon become normal, and irritated demands will stop. He will know that he remains a significant person, that they care about him, want to help him live as long as possible. He will understand that in order to be listened to, it is not necessary to resort to outbursts of irritation.
Third stage: trade.
The third stage, when the patient tries to come to terms with the disease, is not so well known, but nevertheless very useful for the patient, although it does not last long. If at the first stage we could not openly admit the sad facts, and at the second stage we felt resentment towards others and God, then perhaps we will be able to come to some agreement that will delay the inevitable. A terminally ill patient resorts to similar techniques. He knows from past experience that there is always a faint hope of rewarding good behavior, the fulfillment of desires for special merit. His desire almost always consists first in prolonging life, and later is replaced by the hope of at least a few days without pain and inconvenience. In essence, such a deal is an attempt to delay the inevitable. It not only determines the reward "for exemplary behavior", but also establishes some kind of "final line" (one more performance, son's wedding, etc.). From a psychological point of view, promises can indicate hidden feelings of guilt. For this reason, it is very important that the hospital staff pay attention to such patient claims.
The sequence of stages of the patient's reaction……………………………... 8 pages
How to and how not to behave with a dying patient………. 10 pages
Conclusion……………………………………………………………………. 12 pages
List of used literature………………………………………… 13 pages
truthfulness rule states: when communicating with patients, it is necessary to inform them truthfully, in an accessible form and tactfully about the diagnosis and prognosis of the disease, available methods of treatment, their possible impact on the patient's lifestyle and quality of life, and about his rights. The implementation of this rule is necessary to ensure the autonomy of patients, to create for them the possibility of informed choice and control over their own lives. Sometimes this rule is used in the form of the prohibition against telling lies, i.e. say something that is false from the speaker's point of view. Some ethicists believe that the concept of truthfulness should also include the right of the interlocutor to receive a truthful message. A person is obliged to tell the truth only to those who have the right to know this truth. If a journalist meets a doctor on the street and asks: “Is it true that citizen N. has syphilis?”, then in this case the truthfulness rule does not impose any obligations on the doctor in his conversation with the questioner.
Compliance with the rule of truthfulness ensures the mutual trust of partners in social interaction. Even the most distrustful person, ready to suspect everyone he meets of deliberate deceit, is forced to trust either those who provided him with the minimum knowledge necessary to doubt, or the "expert" value judgments of outsiders to verify his suspicions. In any case, truthfulness and trust will form the basis on which he will have to rely, expressing his doubts, not to mention trying to somehow resolve them. The wider this foundation - the space of trusting social relations, in which a person is confident in the truthfulness of his partners, the more stable and fruitful his life is.
There is hardly an ethicist or physician who would deny the importance of the truthfulness rule. However, a different point of view prevailed in medicine for a long time, according to which it is inappropriate to tell the truth about the unfavorable prognosis for the patient of his disease. It was assumed that it could harm the patient's well-being, cause negative emotions, depression, etc. in him. As the American physician Joseph Collins wrote in 1927: "The art of medicine is largely the skill of preparing a mixture of deceit and truth." Therefore, "every doctor must cultivate in himself the ability to lie as a kind of artistic creativity". This kind of statement is not an exaggeration, at least in relation to the tradition that prevailed not only in Soviet medicine to hide from the patient the truth about the diagnosis of a malignant disease or the prognosis of an imminent death.
But the situation is changing. In recent years, the tradition of "holy lies" has become more and more the subject of serious criticism. The development of legal awareness and legal relations in healthcare is based on the recognition of the patient, even the seriously ill, as an equal subject in relations with medical workers. This is his life and he, as a person, has the right to decide - how to manage the little time that he has left. Therefore, the legislation in force in Russia guarantees the patient's right to truthful information about the diagnosis, prognosis and methods of treatment. Of course, information about a negative forecast can be traumatic. But in medical practice, such forms of addressing the patient and reporting unfavorable information that are less traumatic have already been developed. The doctor must be able to wield a word no worse than a scalpel.
Rule of privacy (privacy) states: without the consent of the patient, the doctor should not collect, accumulate and distribute (transfer or sell) information relating to his private life. Elements of private life are the fact of visiting a doctor, information about the patient's state of health, biological, psychological and other characteristics, methods of treatment, habits, lifestyle, etc. This rule protects the privacy of citizens from unauthorized intrusion by others - including doctors or scientists. Historically, it became relevant when, in the early 60s of the 20th century, wide areas of a person’s personal life (primarily sexuality) ceased to be the subject of medical control. For example, homosexuality from a mental disorder (perversion), which doctors unsuccessfully tried to treat, including surgically, turned into a "sexual orientation."
At present, the danger of criminal interference in the private life of citizens with the use of various kinds of encoded, stored on media and distributed on the Internet personal information is of particular importance.
In such cases, it is also appropriate to use another rule of bioethics - privacy policy(preservation of medical secrecy). Without the permission of the patient, it is forbidden to transfer to "third parties" information about his state of health, lifestyle and personal characteristics, as well as the fact of seeking medical help. This rule can be considered an integral part of the privacy rule, although it is usually considered as an independent one. If the rule of truthfulness ensures the openness of communication between partners in social interaction - doctors and patients, then the rule of confidentiality is designed to protect this unit of society from unauthorized intrusion from the outside by direct participants.
In the form of the concept of medical secrecy, the confidentiality rule is fixed in many ethical codes, starting with the Hippocratic oath and ending with the "Promise of the Doctor of the Russian Federation". Article 61 "Medical confidentiality" is devoted to confidentiality in the Fundamentals of the Legislation of the Russian Federation on the Protection of the Health of Citizens. The use of the term "medical" is justified by tradition, but is inaccurate on the merits of the matter, since we are talking about the obligations not only of doctors, but also of any other medical and pharmaceutical workers, as well as officials (for example, employees of investigative or judicial authorities, insurance companies) to whom medical information can be transferred in accordance with the law.
The legislation defines a rather narrow range of situations in which a medical worker has the right to transfer information known to him to third parties. First of all, we are talking about those cases when the patient is not able to independently express his will due to a violation of consciousness or because of minority.
The law also limits the operation of the confidentiality rule in the presence of a threat of the spread of infectious diseases, mass poisoning or injury. Just like the legislation of other countries, the law on the fundamentals of healthcare in the Russian Federation allows for a violation of confidentiality if the doctor has reason to believe that the patient's health disorder was the result of unlawful actions. An example would be gunshot or stab wounds. But in such cases, the law limits the circle of those persons to whom this information can be transferred, and they themselves become bound by the rule of confidentiality.
Voluntary informed consent rule prescribes: any medical intervention must be carried out with the consent of the patient, obtained voluntarily and on the basis of sufficient knowledge of the diagnosis and prognosis of the development of the disease, taking into account different treatment options. This rule is fundamentally important when performing any medical intervention.
When conducting a medical intervention or clinical trial, it is also necessary to inform the patient about the availability of alternative treatments, their availability, comparative effectiveness and risk. An essential element of informing should be information about the rights of patients and subjects in a given medical-prophylactic or research institution and how to protect them in cases where they are infringed in one way or another.
Historically, the rule of informed consent arose in connection with the problems of conducting scientific research on humans. This will be discussed in more detail in the presentation of topic 7. It should also be noted that both in world and domestic practice there was already a tradition of obtaining the patient's consent to the use of surgical methods of treatment. However, the informed consent rule is broader. simple receipt consent, primarily due to the fact that it aims to ensure voluntariness and freedom of choice of patients and subjects by adequately informing them.
According to the interpretation of the leading bioethical theorists T. L. Beechamp and J. F. Childress, the rule of voluntary informed consent allows us to solve three main tasks: 1) Ensure respect for the patient or the subject as an autonomous person who has the right to control all procedures or manipulations with his own body carried out in the course of treatment or scientific research. 2) Minimize the possibility of moral or material damage that may be caused to the patient as a result of dishonest treatment or experimentation. 3) Create conditions conducive to increasing the sense of responsibility of medical workers and researchers for the moral and physical well-being of patients and subjects.
The Russian word "doctor" literally means "he who lies." And not at all because our distant ancestors did not trust their doctors so much. It’s just that in ancient times the word “lie” meant only “to speak”, and the main means of treating any illness was precisely conspiracies from ailments. It can even be said that the Russian name of the healers reflected more respect for the word and its healing capabilities.
Nevertheless, quite recently, doctors under certain circumstances not only could, but were obliged to hide from patients the true state of affairs in relation to their health. Today, Russian law looks at this in a completely different way, but neither in society as a whole, nor among doctors, the question of the admissibility and justification of lies in such situations has not yet been finally resolved. It is, of course, about whether the doctor should always tell the patient his real diagnosis.
Blissful ignorance
“Surround the patient with love and reasonable conviction, but most importantly, leave him in the dark about what lies ahead for him, and especially about what threatens him,” Hippocrates, the most authoritative theorist of medical practice in the era of antiquity and the Middle Ages, recommended to his followers. Behind this advice is the idea of illness, first of all, as suffering, which the doctor is called upon to alleviate. From this point of view, it is quite enough that the patient only follows the instructions and appointments of the doctor, and his consciousness is not burdened with knowledge of possible unfavorable forecasts (including mortal danger), which aggravates physical suffering. "Who gave you the right to tell me about this?" - escaped from Sigmund Freud, who learned that he had cancer. The founder of psychoanalysis was certainly a man of courage and inquisitiveness, but he did not see the point in carrying a horror that could not be prevented. Moreover, he believed that the doctor had no right to put such a burden on the patient.
In addition, according to adherents of this tradition, a “terrible” diagnosis complicates treatment. As you know, the placebo effect works both ways, and if the patient is sure that nothing will help him, the effectiveness of almost any treatment is significantly reduced. For some patients, a diagnosis-sentence can lead to very reckless steps. Many publications on this topic describe a specific clinical case: a certain oncologist reported a disappointing diagnosis to a patient who gave the impression of a calm, confident and balanced person. He listened to the recommendations, took a referral for additional tests and hospitalization, thanked the doctor, went out into the corridor and threw himself out the window. True, the popularity of this story among defenders of the mystery of the diagnosis suggests that this case is almost unique. But who knows how many patients, having learned about the true state of affairs, refused treatment or simply lost the desire and strength to resist their illness?
Finally, there is always the possibility that a formidable diagnosis is erroneous, and then the suffering that he caused the patient will turn out to be completely in vain. It happens even more often that the doctor determined everything correctly, but the patient took his words too categorically, considering the probable sad outcome inevitable. Those who were close to Yevgeny Evstigneev in the last days of his life say that when a British physician explained to him possible options for treating coronary heart disease and spoke about the seriousness of his disease, the great artist was either due to a mistake of a translator, or under the influence some of his own experiences, he realized that his life was literally hanging by a thread and it was pointless to fight for it. The hair really broke off, and Yevgeny Alexandrovich died without waiting for the operation.
However, despite all these quite sound arguments, in the European medical tradition the concealment of the diagnosis from the patient has always been more the right of the doctor than his duty. The fact is that this approach is fraught with an unremovable ethical problem. Its proponents usually use euphonious words like "hiding the diagnosis." But if the doctor really wants the patient to be unaware of his doom, he must lie and lie as convincingly as possible. In response to the tense questions “Doctor, what is wrong with me? What awaits me? you can’t keep silent, change the subject, or casually drop “Why do you need to know this? Fulfill the assignments, and the rest is none of your business!” - the patient will immediately understand that the matter is bad.
However, such ethical subtleties did not bother Soviet medicine: diagnoses were falsified in it regularly, and not only when it came to incurable fatal diseases. Deliberately false diagnoses were entered both in the medical history of participants in the tests of weapons of mass destruction, and in the certificates of death of prisoners issued to their relatives. And these were not excesses, not abuses of individual physicians (occurring from time to time in any country), but, on the contrary, mandatory requirements, from which doctors practically could not evade. The same was true for the terminally ill. “It is known that “perjury” in relation to incurable and dying patients was the deontological norm of Soviet medicine,” writes Irina Siluyanova, head of the Department of Biomedical Ethics and Medical Law of the Russian State Medical University. The ban on telling the patient the truth was even given a theoretical justification: in the struggle for the life of the patient, every opportunity should be used, and as soon as the fear of death weakens the body in its fight against the disease, thereby bringing death closer, then telling the patient his true diagnosis was equated to not giving him adequate medical care. Thus, depriving a person of the right to reliable information about his own condition turned into the protection of his own right to medical care. Such reasoning would fit perfectly into the set of slogans from George Orwell's famous dystopia "1984": "freedom is slavery", "war is peace", etc.
The cure is worse than the disease
At the same time, in world medicine, this approach began to lose ground starting in the 1950s. Today, in the developed countries of Europe and North America, it is simply impossible: the standards and rules adopted there for the relationship between a doctor and a patient require that the latter be provided with all the information about his disease, the means of treatment used and their possible consequences.
There were several reasons for such a decisive turn. Western doctors have seen in practice that no matter how dangerous the cruel truth is for the patient, a merciful lie can do much more trouble. A false or embellished diagnosis may lead the patient to refuse radical treatment. It would seem, how much does this change when it comes to incurable diseases? But remember that more often than all other doctors to deceive patients happened to oncologists. Meanwhile, in recent decades, the diagnosis of cancer has ceased to be an unconditional death sentence - a number of malignant tumors can be completely cured, while modern medicine can extend the life of victims of others for years and decades. But self-healing from cancer is almost impossible - a patient who refuses intensive treatment is doomed to a quick and painful death. Under these conditions, hiding the true diagnosis from him became a direct threat to his life and contradicted the first commandment of medical ethics - "do no harm."
The concealment of the diagnosis also had other unpleasant consequences. Such a practice could not remain unknown to society for any length of time. Everyone knew that in hopeless cases, doctors do not tell the truth. And this meant that not a single patient with a more or less successful diagnosis could be sure of it, and what if this is just a calming camouflage, behind which a fatal illness actually lies? It turned out that, trying to save incurable patients from unnecessary suffering, doctors doomed many other people to the same suffering. And worst of all, this practice irreparably undermined the patient's trust in the doctor and medicine in general. Meanwhile, this trust is absolutely necessary for successful treatment.
There was another consideration: a doomed person has other priorities and a different price of time. And he has the right to know how much he has left to stay in this world in order to settle his affairs as far as possible: manage to dispose of property, complete a manuscript or project, make peace with once close people ... But you never know? Imagine a married couple who decide to have a child, not knowing that his father will not live to see him. In this situation, what is more important: to know about the disease or to be in the dark? A question to which there is still no clear answer. That is why the situation with the depressing effect of a fatal diagnosis on an incurable patient is far from simple.
In 1969, the book "On Death and Dying" was published in the United States and instantly became a bestseller. Its author, clinical psychologist Elisabeth Kübler-Ross, specifically explored the mental world of terminally ill people. In her opinion, a person's attitude to imminent and inevitable death goes through five stages. The penultimate of them is really depression, but after it there is still a stage of “accepting death”. The patients who are on it, having gone through despair, begin to feel their condition as the highest point of personal growth. “The happiest time of my life”, “over the past three months I have lived more and better than in my entire life”, “I am happier than I have ever been before” - said the interlocutors of Kübler-Ross. Most of them, by the way, were, if not atheists, then secular people, far from church life and strong religious feelings. As for the believers, their attitude towards death gave even less reason for the “merciful lie”: for them, the time before death is the most important period of earthly life and the last hope of gaining eternal life. “Hiding information from a patient about a serious condition under the pretext of preserving his spiritual comfort often deprives the dying person of the opportunity to consciously prepare for death and spiritual consolation,” says the Fundamentals of the Social Concept of the Russian Orthodox Church on this subject.
True, only a few of the patients with whom Dr. Kübler-Ross spoke reached the stage of accepting death. But her book made it clear that incurable patients who are trying to be kept in the dark about their condition experience not less, but more moral suffering than those who are honestly told about the imminent end.
Owner of your sufferingIn light of all this, the foundations of the practice of concealing a diagnosis seem very shaky. But the foregoing considerations would hardly suffice to decisively banish from medicine the approach that has dominated for centuries and sanctified by the name of Hippocrates. However, it was in the 1960s that a fundamentally new concept of medicine began to take shape in developed countries. Just then, in these countries, epidemics, wars and vitamin deficiencies for the first time in the history of mankind receded into the background. The main causes of death of people turned out to be cardiovascular and oncological diseases, from which neither vaccinations, nor sanitation, nor isolation of the carrier helped - none of the measures that in previous decades provided developed countries with a breakthrough in increasing life expectancy.
A new model of medicine just emerged as a response to this situation. One of its cornerstones is the idea of man's absolute sovereignty over his health and his body. No one has the right to impose on him any measures - no matter how useful or even saving. Such an understanding of medicine excludes the very question of the possibility of concealing the true diagnosis from the patient. The point is not even that it is more useful and effective for the treatment process - to report the diagnosis or hide it. The doctor simply does not have the right to hide anything from the patient regarding his illness and his future, this information does not belong to him, nor to the medical institution, nor to the medical community as a whole.
The basis of the relationship between the doctor and the patient in the new model was the principle of "informed consent". According to it, the doctor is obliged to inform the patient of all available information (necessarily explaining to the non-specialist in words what it means), suggest possible actions, talk about their likely consequences and risks. He may recommend one or another choice, but the decision is always made by the patient himself.
In fact, the new model completely deprives the healer of the opportunity to act on behalf of any higher powers (whether it be ancestral spirits or saints). Medicine is turning into a specific branch of the service sector. Of course, these are services of a special kind: the life and health of the “customer” depend on the skill and conscientiousness of their performer. In principle, however, the new relationship between a doctor and a patient is no different from the relationship between an auto mechanic or a hairdresser and their clients.
The principle of informed consent is enshrined in the documents of the World Medical Association (Lisbon Declaration on the Rights of the Patient, 1981) and World Organization Health (Declaration on the policy of ensuring the rights of the patient in Europe, 1994). In 1993, this principle became a law in Russia, being included in the Fundamentals of the Legislation of the Russian Federation on the Protection of the Health of Citizens. True, according to the testimony of the head of the department of standardization in healthcare at the Moscow Medical Academy (MMA), Professor Pavel Vorobyov, the procedure for obtaining the consent of the patient became possible only in 1999, after the relevant order of the ministry and the approval of the form of the document. Prior to this, only patients participating in international clinical trials were asked for consent. In practice, this rule began to be applied even later, and often purely formally (“Sign here!”) And not to all categories of patients. The Russian medical community took the new norm with a grain of salt. And hardly accepted it completely. “The right of the patient to know the exact diagnosis is deontologically completely wrong. The right of the patient to get acquainted with medical records is ruthless!” - says the chairman of the Moscow Society of Orthodox Doctors, co-chairman of the Church and Public Council on Bioethics, professor of the same MMA Alexander Nedostup. It turns out that unity this issue not only among physicians - opposite points of view can be heard even from fellow believers or employees of one leading medical university.
In this context, the interpretation of this issue in the Code of Medical Ethics of the Russian Federation, adopted in 1997 by the Second Pirogov Congress of Physicians, is interesting. Immediately after the fundamental provision “The patient has the right to comprehensive information about his state of health”, there are reservations: “... but he can refuse it or indicate the person who should be informed about his state of health” and even “information can be hidden from the patient in where there are substantial grounds for believing that it could seriously harm him.” However, the following phrase again restores the priority of the patient: "at the request of the patient clearly expressed, the doctor is obliged to provide him with complete information."
In part, this contradictory wording reflects the opinion prevailing in the medical community that the majority of Russians are not morally ready to receive all the information about their health and take full responsibility for it. Say, in the questionnaires, everyone is brave, everyone will write that they want to know the true diagnosis, and if you tell them this diagnosis, you can immediately prepare for the treatment of severe depression. Therefore, they say, the right to complete information should be recognized for the patient, but it should be given out only to those who actively demand it. However, even in this "moderate" understanding, the principle of informed consent precludes giving a patient a false diagnosis.
However, the careful phrases from the Code of Medical Ethics imply not only this.
Limits of the normIn 2001, a group of researchers conducted a postal survey of all Scottish consultant psychiatrists: the topic was discussing psychiatric diagnoses with patients. The majority of respondents (75% of specialists) agreed that it is the psychiatrist who should tell the patient that he has schizophrenia. However, in practice, only 59% of specialists do this. During subsequent meetings with the patient, this proportion gradually increases, but 15% of psychiatrists reported that they do not use the term "schizophrenia" at all in a conversation with a patient, even if the diagnosis is obvious. Only half of psychiatrists report personality disorders or signs of dementia (dementia), while almost all (95%) report emotional disorders or increased anxiety.
But in fact, what should be done in the case when the patient obviously cannot adequately perceive or even simply understand the words of the doctor? Of course, if he is declared incompetent by the court, the doctor conducts all further conversations only with his legal guardian representatives. But schizophrenia (at least in the stages that in question) does not imply that a person is immediately deprived of certain rights, including the right to receive information about the state of his health. And in any case, in order to deprive the patient of such a right, you must first recognize him as sick and inform him about it. Psychiatrists admit all this, but sometimes they are in no hurry to tell the patient about the established diagnosis: it's scary. Well, how can he, having heard a formidable word, cut off all contacts with the doctor and refuse to be treated? It is better to try, without frightening the patient, to persuade him to start treatment, and then he can be informed of the diagnosis. Or you can't tell...
The mentally ill (who, by the way, their mental illness does not protect in any way from ordinary somatic diseases, for example, cancer) is not the only category of patients in relation to which the literal application of the norm on “informed consent” is difficult. How, say, to be with children who also become victims of dangerous, and even incurable diseases? From a legal point of view, everything is clear: in any case, all decisions will be made by the parents, and it is necessary to talk with them. And, it would seem, children could be saved from terrible knowledge. Why is it for them?
However, according to the staff of the Russian Oncological scientific center, it is also better for children to be informed of the true diagnosis, then they can tolerate difficult treatment more easily and interact better with doctors. It turns out that an explanation, no matter how frightening it may sound, is still better than painful procedures without any explanation. However, according to oncologists, they do not tell children the word "cancer", which causes mystical horror. scientific names types of tumors are perceived much calmer.
It seems strange that the absolute priority of the will of the patient was recognized precisely at a time when the requirements for the professional qualifications of a doctor increased incredibly. But this has its own pattern. "War is too serious a matter to be entrusted to the military," Talleyrand once said. Apparently, this is true for all serious matters, including such a humane one as medicine.
Perhaps, only in our country the situation when doctors, relatives and even friends know the patient's diagnosis, and the patient himself remains in the dark, is the norm, not the exception.
What is more from such silence - benefit or harm - neither the attending physicians, nor psychologists, nor deontologists (specialists in ethics and morality in medicine) can unambiguously say. On one side of the scale is the right of a person to know what is happening to him, on the other - the negative consequences of such knowledge, which are characteristic of representatives of our culture with its fear of death.
medical approach
In many areas of medicine, patient awareness is one of the conditions for successful treatment. It is difficult to imagine a gynecologist who did not inform a pregnant woman about the threat of a miscarriage, or a hypertension discharged after a crisis without recommendations to monitor pressure.
Things are different with oncologists and other specialists who often face death. They need, on the one hand, not to finish off the patient with a terrible truth, on the other hand, to inform him about the possibilities of treatment.
In the West, the problem of silence has been radically solved - to inform the patient about everything that concerns his health, even in the case of hopeless diseases, if the mere fact of reporting a diagnosis does not give instant complications. Simply put, no one will immediately tell a person with a myocardial infarction a week ago about a freshly diagnosed carcinoma (one of the forms of cancer), even in America, which is concerned about the rights of the patient. But from those patients whose risk of dying this very hour is not documented, nothing will be hidden.
In domestic practice, the decision remains on the conscience of the doctor. It is still not always customary to report cancer and other adverse prognosis, although by law any patient over 14 years of age has the right to full information about their health status and diagnoses. Often you can not get a truthful answer even in response to a direct question "Doctor, do I have cancer?". Is it legal? Yes and no.
In theory, NOT Diagnosis can only be reported if the patient himself NOT wants to know him, even if the disease NOT dangerous to those around you. But for the humanism of physicians, there remains a loophole in the fundamentals of the Russian legislation on health protection: the actions of a doctor to conceal a diagnosis can be considered lawful if three conditions are simultaneously met: this is done for release the patient from moral suffering when deadly disease, which does not endanger the health of others. That is, cancer in the last stage with metastases for the benefit of the patient can be called anything, but any infectious disease is not.
However, the problem is that there is no approach that will be a boon for everyone. And here comes into force not only the medical aspect (reflection of the news on the state of health, possible refusal of therapy or, on the contrary, more conscious treatment planning, etc.) aspect, but also the moral and ethical one. Which is higher: the right of a person to know that he is dying, or the false maintenance of hope in him in an attempt to ease the last days?
death sentence
Is it possible to harm the terrible truth? Easy. If a person considers cancer to be a death sentence, then the great power of self-hypnosis can hasten a sad end even at those stages when a cure is possible.
Is it possible to say that the silence of the diagnosis is an unequivocal benefit? Unlikely. After all, we are not allowed to look at the situation through the eyes of the patient and understand how he wants to live the allotted time: do something important for himself, fulfill a dream, take care of loved ones, or remain in happy ignorance.
The lie "for good" has its supporters and opponents. Saying “better the bitter truth than sweet lies” is easier than taking hope away from a loved one. Yes, we will all die, but a healthy human psyche is characterized by the repression and denial of the irreparable, so ordinary citizens who are not philosophers or deeply religious rarely think about this side of life. And it is very difficult to predict the reaction of a person who has learned that he has a few days, weeks or months left to live.
Silence as a crime
In some situations, the concealment of a diagnosis by a doctor is a crime for which there is a very real criminal liability.
Criminal acts include:
- any attempt to cover up a medical error;
- concealment of the diagnosis for the appointment of paid unnecessary procedures;
- deterioration during the course of the disease, due to the patient's ignorance of the real state of affairs;
- not informing the patient about a contagious disease.
Almost half a century ago, psychiatrist Elisabeth Kübler-Ross described five psycho-emotional states that hopelessly ill patients go through: denial, aggression, bargaining with oneself, depression, and acceptance of the inevitable. Nothing has changed since then. Some have the strength to accept the disease and live with it for the allotted time (not to be confused with depressive passivity), someone remains at the stage of denial, depression or even aggression, making the existence of loved ones unbearable.
Meanwhile, not always the person from whom the diagnosis is hidden does not know him. How do you like the story about a 76-year-old grandmother with stomach cancer, who endured terrible pain for several months so that the children would not guess that she knew everything, and it was easier for them? Everything was revealed at the stage when the old woman began to scream in pain. I will not describe the state of already elderly people who realized that their mother suffered terribly because of their silence.
Tell or not?
Arguments for
- When there is no need to hide anything from the patient, it is easier for specialists to plan treatment. And the patient has the opportunity to make a conscious choice of clinic and doctor.
- If the patient knows his diagnosis, it is easier to convince him of the need for radical treatment.
- Fighting a specific enemy is often more effective than fighting against who knows what.
- The patient has the opportunity to receive specialized psychological assistance, for example, in support groups for cancer patients.
- There is more trust in relationships with relatives who do not have to pretend that everything is in order.
- The patient has the ability to manage his life.
Arguments against
- Unpredictable consequences of psychological shock.
- The negative impact of self-hypnosis on the patient's condition.
- The inability to adequately assess the patient's condition (children, the elderly, patients with mental disorders).
Unfortunately, no matter what arguments for and against are given, doctors and relatives need to consider each situation with a potentially sad outcome individually, taking into account the characteristics of the character, condition, desire of a person to know or not to know the truth and prospects for treatment. But at the same time, it is better to leave the decision anyway to those whose life hangs in the balance. Find out if the person wants to know the terrible truth or not (it can be done in a roundabout way). And if he wants, he must know her. And what to do with this truth is the personal choice of the patient. Will he go for a hopeless operation, refuse to be treated, commit suicide, open a cat shelter with the last money, want to make peace with his enemies, or pretend that nothing happened.
To speak or not to hush up the diagnosis is a problem, in the solution of which it is necessary to proceed from the aspirations of the patient himself, and not from the convenience of those around him. The task of relatives in such a situation is to help and support, and a person is free to end his days as he sees fit.
Olesya Sosnitskaya
