Medical Ethics I Dr Martin Dyar Large Chemistry Theatre, 10am 20th October, 2008 Lecture One of Five: Bioethics: Introduction and Historical Overview

What are we doing when we are engaged in philosophy? ‘The role of the philosopher is to remain obstinately curious about what is usually taken for granted …’ (Evans, 2001) Clarity, depth, and consistency of statement and perception. Example of a student breaching confidentiality: Why is it wrong? Values and interests. Justification? Virtue, duty (view of patient), rights, consequences.

What are we doing when we are involved in ethics? Ethical issues emerge when certain actions ought or ought not to be performed because of the impact these actions can be expected to have on the interests of others. As we grow up, we come to understand morality as a set of normative standards about doing good, avoiding harm, respecting others, keeping promises, and acting fairly, as well as standards of character and moral excellence. Our moral life has traditionally been examined from three perspectives: virtue, duty, and the consequences of our actions. Emmanuel Levinas: The ‘Face to Face’ relationship. The role of the ego. The Other. Conversation. Medicine and technology deflecting the Face to Face? George Eliot. ‘The other side of silence.’ Ted Hughes’ Crow: ‘Ought I to stop eating and try to become the light?’ A vegetarian vision. An agony of Kinship. The internal, unreflective and sometimes blind nature of ethical responses and ideas, and of course, the endurance of the unethical A medical ethics course: the effort to be systematic, to enter a discourse, to pursue clarity and depth, with the aim of developing the ability to negotiate the complex, the dramatic, but also the more everyday moral concerns in medicine. Three key things in note 1: ought and ought not. Impact. And the interests of others.

What are we doing when we are engaged in medical ethics? ‘Medical ethics is the application of ethical reasoning to medical decision making’ (BMA) We assume that there is a set of tools, concepts, principles, resources, methods, practices and habits that we can master, then apply. A search for morally acceptable and reasoned answers in situations where different moral concerns, interests or priorities conflict … involving critical scrutiny of the issues and careful consideration of various options The process through which a decision is made is often as important as the decision itself, and the ability to justify is always central. Clarity and Depth: explaining your position. If this class was merely a reading of the medical council code, what would be missing? What is insufficient about conformity to professional standards in terms of the new medical ethics? Dramatic: Jehovah’s witness, requests for assisted suicide, assisted reproduction, public health and alcohol advertising. Ordinary: communication with individual patients, their families, standards of confidentiality and consent (information, deception), multicultural society, multi-disciplinary team. Instead of telling you you should. I have begun by asking what should means? Suggesting its role in moral discourse. The moral understanding and awareness that we are attempting to promote is much deeper.

Early and traditional medical ethics The medicine man is an age old figure, representing what Levinas has termed the primordial category of analgesia Many examples of medical ethics before Hippocrates (c. 500BC) Code of Harrumabi (c. 1750BC) set penalties for failed procedures Hinduism: Ayur Veda: warns against injuring or abandoning the patient, and against treating the king’s enemies The fundamental, ancient human gesture that underlies all of medical activity. The response to suffering of another. Harumabi: Early example of regulation, codification, and an acknowledgement of the tension between harm and benefit that defines medicine to this day, and the need not to leave ethical decisions to the whim or guess work of the individual practitioner. Examples of bias in the early texts. Ayur Veda: discriminating against your patients is important part of ethical practice!

The Hippocratic Oath ‘I will use dietetic measures to the use and profit of the sick according to my capacity and understanding.’ Honour one’s teacher like a parent, ‘share his fate and if the occasion arise supply him with the necessaries of life’ Twofold significance of the Oath: it establishes the principles of beneficence and non-maleficence prohibition of potions and poisons for abortion and euthanasia affirms the view of the sanctity of life Bias towards the teacher.

to pursue patients’ best medical interests The Hippocratic Oath and its successors emphasised the following medical duties to pursue patients’ best medical interests to avoid harming or exploiting them and to maintain their confidences Portrait of Dr. Gachet, by Van Gogh. Foxglove, from which digitalis is derived, for heart conditions (stimulates heart muscle) represents his profession. Healer of the heart. Good friend of Van Gogh’s. Van Gogh was aiming in this painting for a balance of Meloncholy and wisdom.

The essence of the Hippocratic tradition The definitive feature of [the Hippocratic Oath] is the commitment of the physician to benefiting the patient without any acknowledgment of patients’ rights, such as the right to be told the truth or to give consent before being treated. The more purely Hippocratic codes also pay no attention to the welfare of society or other individuals (Veatch)

Critical analysis of issues is not part of traditional medical ethics Ethical norms were imparted and enforced in the process of medical socialisation, and reinforced by written codes, typically based on the H.O., without explicit analysis of the issues involved. Percival’s influential 1803 code was originally composed to meet the needs of a group of overworked and quarrelling doctors in Manchester.

Medical ethics can be understood both in traditional terms and as a new analytical practice, bioethics Traditional medical ethics: ‘the standards of professional competence that the profession expects of its members’ (Boyd 1997) Until the middle of the twentieth century, paternalism was the norm and traditional medical ethics was less concerned with respect for patients’ autonomy or with justice. I want to explore that change for you today in order to develop a sense of what we mean by medical ethics in the modern sense of the term.

What is the new medical ethics? A critical process through which substantive ethical claims are justified (or criticised) in the light of argument and counterargument. Informed by a wide variety of perspectives, including multicultural insight, and various academic disciplines such as moral philosophy, law, the social sciences, history and theology, including more recently literature and the arts. Medical ethics has ceased to be the sole domain of doctors: ‘part of the general moral and ethical order by which we live’ and increasingly in practice ‘tested against the principles of society.’ (Kennedy, 1981) We can continue with this question in two ways: How does it differ from the traditional form, and what factors prompted its emergence.

How does bioethics, or modern medical ethics, differ from traditional medical ethics? It is not limited to questioning the ethical dimensions of doctor-patient and doctor-doctor relationships It’s goal is not the development of, or adherence to, a code or set of precepts (professionalisation) but a better understanding of the issues (Percival’s Role) It is prepared to ask deep philosophical questions about the nature of ethics, the value of life, what it is to be a person, what it means to be a doctor, the significance of being human, and the experience of illness. It embraces issues of public policy and the direction and control of science It is interdisciplinary, presupposing the broad social and cultural significance of medicine In Levinasian terms: a wider realm of others has been granted moral significance. Bioethics attempts to respond more profoundly. We can get a sense of what modern medical ethics is trying to do by distinguishing it from traditional medical ethics.

What factors prompted the emergence of the new medical ethics? 1 Medical atrocities of the Nazi doctors: Nuremburg Code, 1946: first articulation of informed consent: The patient or subject has the right to be informed of the relevant facts of what is being proposed and to approve or disapprove before the doctor proceeds Changing social attitudes, including less deference to authority More assertive attitudes to individual rights and self determination A shift from the preoccupation of medical ethics with the individual patient at the expense of the community The increasing plurality of cultural and religious norms The advent of human rights New, more powerful, more expensive medical technologies, including those with the capacity to prolong life, alter psychological states, impede and enhance reproductive capacity, and change our genetic structure.

What factors prompted the emergence of bioethics, or the new medical ethics? 2 Social and cultural change advanced the questioning spirit, less deference for authority: Civil rights movement, focussing on justice and inequality Cuban Missile crisis and Vietnam war, renewed questioning of war and nuclear weapons Student activism, calls for greater social relevance in university courses Feminism, contraception, abortion, reproductive rights Growth in ‘patient rights’ movement: a growing concern about the power exercised by doctors and scientists Feminism gave a new self-consciousness and self-awareness to the nursing profession. Nursing Code, 1965: ‘The nurse is under an obligation to carry out the physician’s orders intelligently and loyally’ ‘The first and most helpful criticism I ever received from a doctor was when he told me that I was supposed to be simply an intelligent machine for the purpose of carrying out his orders’ (Dock, 1917) 1973: The nurses ‘primary responsibility’ is no longer doctors but patients, ‘those people who require nursing care.’ Why the growing interest in health care ethics? A new spirit of questioning, a social and intellectual impetus for equality and the interrogation of old authority. An understanding that medical science was not ‘all good.’ The values behind its delivery must be examined. A new consciousness, concerned with benefit, vulnerability, compassion, rights, accountability. Social ownership of medicine. An image of a peace activist.

What factors prompted the emergence of bioethics, or the new medical ethics? 3 Bioethics began to take shape as a field of study in the 1960s. A response to new developments in clinical medicine: dialysis, organ transplants, artificial ventilators; and in medical science: IVF, related reproductive technologies, contraceptives, prenatal testing. The new challenges and choices prompted a growth in academic comment. Moral philosophy: shift from meta-ethics to applied ethics. New structures emerged. Hastings Center and the Kennedy Institute. Journal of medical ethics. The understanding that new developments within medicine and the life sciences were raising ethical issues for society as a whole In the 1970s the term ‘bioethics’ came to refer to the growing interest in the ethical issues arising from healthcare and the biomedical sciences We can also get a clearer sense of the phenomenon of modern medical ethics or bioethics by asking what gave birth to the discipline as it now appears and functions.

What factors prompted the emergence of bioethics, or the new medical ethics? 4 ‘Outsider’ involvement in the previously largely closed medical world, such as philosophers, theologians, lawyers, sociologists and psychologists, looking in and offering their views. The beginnings of acceptance that insights from these varying perspectives could be helpful in the development of medicine; The philosophically more critical, analytic, and multidisciplinary approach to ethical issues arising within the clinical practice of medicine Increasing realisation that medical ethics needed to extend its sphere of interest beyond the clinical encounter into broader social issues such as the fair and beneficial distribution of healthcare facilities My anecdote about anaesthetist/ethicist. These aspects continue to define bioethics.

What factors prompted the emergence of bioethics, or the new medical ethics? 5 A sense of the profession’s obligation to become involved, as health care professionals, in trying to remedy social factors that impinged adversely on people’s health. Lifestyle: unhealthy diet, smoking, and lack of exercise; environmental pollution; overpopulation; even unemployment, poverty, crime, and warfare.

The shift to the new medical ethics: summary As a result of major changes, medical ethics had to develop a more analytical approach. A clear shift from the previous reliance on medical paternalism to a doctor-patient partnership approach, adding respect for patients’ autonomy and an increasing awareness of justice to the traditional Hippocratic concern to provide health benefits with minimal harm.

Bioethics infrastructures: a global field of inquiry The first institutions and centres of bioethics: 1969, the Institute of Society, Ethics and Life Sciences (the Hastings Centre). Daniel Callahan. Hastings Centre Report. 1971, Kennedy Institute of Human Reproduction and Bioethics at Georgetown University. First use of the term bioethics. UK: 1963 London Medical Group. 1975, Journal of Medical Ethics. Similarly: Nordic, Netherlands and Benelux. Germany slower. Interdisciplinary aspect: a field of learning and inquiry defined by its movement across subjects: Moral philosophy, moral theology, law (the big three), history, psychology, economics, philosophy, literature, anthropology, sociology. Subject also includes: politicians, the media, and the general public. Undergraduate and postgraduate bioethics teaching now commonplace, and nursing and medical schools see it as integral to their curricula Policy and Consultation: Irish Council for Bioethics

New advances: new moral questions Dialysis Machines Dialysis Machines: it was now possible to sustain kidney failure patients who previously would have died. More renal disease patients than machines, too expensive to make universally available. 1962, Artificial Kidney Centre in Seattle, set up a committee to select patients for treatment, the god committee. A bias was found in its decisions, towards those of the same social class and ethnic background as its members

New advances: new moral questions Heart transplants and respirators Christiaan Barnard, 1967, first heart transplant: ‘a new era of medicine’ Linked to the development of ventilators and the introduction of the concept of brain death Respirators could save many lives, but not all those whose hearts kept beating ever recovered any other significant functions. In some cases, their brains had ceased to function altogether. The realisation that such patients could be a source of organs for transplantation led to the setting up of the Harvard Brain Death Committee, and its recommendation that the absence of all ‘discernible central nervous activity’ should be ‘a new criterion for death.’ The recommendation has subsequently been adopted almost everywhere New question: when should a patient be declared dead: the boundaries of life had been pushed. Should a transplant be part of normal medical care? Should medical science do what medical science can do? The natural aspect of death is distorted, its inevitability veiled in technological promise.

New advances: new moral questions Saving and prolonging the lives of incompetent patients The unclear status of the incompetent patient: if a patient is unable to say ‘no’, does this mean that his or her life must always be prolonged for as a long as possible, even if the patient’s prospects are very poor? Can we talk about proper limits? Duff and Campbell, NEJM, 1973: non-treatment decisions in the special care nursery. Attempt to break ‘the public and professional silence on a major taboo.’ Out of 299 infants, 49 had died as a result of a non-treatment decision. Were these decisions sound? Is either more important: sanctity or quality of life? What are the proper limits to the provision of care, saving and prolonging life, when care is available? Medical futility? Having left an era of relative helplessness, the modern doctor is unlikely to relinquish the ground he has gained on death and disease. Keeping me breathing is medical success. Keeping me out of the grave, even if I am unconscious. When is medical futility relevant? There is also the issue of neglecting the vulnerable.

New advances: new ethical questions Karen Ann Quinlan Feeding tube and respirator coming to symbolise an ‘oppressive medical technology’ (Pence) Details of Karen’s condition: PVS (although term was not in use), with dramatic movements, suggesting resistance and pain. Hospital gave her ‘1 in a million’ chance of recovery, a chance some felt the hospital must offer. Eventually moved from ICU to ER, because she was not in need of a heart monitor Parents reassured by their parish priest, that according to Pope Pius XII, extraordinary means (like the MA-1 respirator) are not morally required of catholics. Family requested that treatment be withdrawn, hospital refused. A lawyer for Karen’s doctor said that turning off the respirator would be ‘like turning on the gas chamber’ In 1957, a group of anaesthesiologists asked Pope Pius XII what they owed to dying patients. The pope said that they need not take ‘heroic’ steps to keep such patients alive: patients were owed merely ordinary, but not extraordinary, care. Pence, 48.

Quinlan Implications of the case: the moral and legal difference between so-called ordinary and extraordinary means of treatment, the role of parents or guardians in medical end-of-life decisions, the validity of an incompetent patient’s previously expressed wishes regarding life-sustaining treatment. New Jersey Supreme Court decided that life support could be discontinued without the treating doctor being deemed to have committed an unlawful homicide.

Controversies that intensified the scrutiny of the ethics of research The Brooklyn Jewish Chronic Disease Hospital (injection with live cancer cells, no consent) Willowbrook State Hospital NY, 1954. (children with learning disabilities inoculated with hepatitis) Tuskegee, Alabama (1930-1970, a study of the ‘natural history’ of syphilis in untreated African-American men)

Landmark in the promotion and articulation of research ethics 1973, US National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research: regulations to protect the rights and interests of subjects of research. Hugely influential. The Belmont Report: early articulation of ethical principles: respect for persons, beneficence, justice. Later embraced by Beauchamp and Childress, Principles of Biomedical Ethics.

Willowbrook State School, NY The number of residents with severe learning disability increased from 200 in 1949 to more than 6000 in 1963. Susceptible children were constantly admitted. Contagious hepatitis was persistent and endemic Dr. Krugman, 1971: ‘Viral hepatitis is so prevalent that newly admitted susceptible children become infected within 6 to 12 months. These children are a source of infection for the personnel who care for them and for their families if they visit with them. We were convinced that the solution of the hepatitis problem in this institution was dependent on the acquisition of new knowledge leading to the development of an effective immunizing agent.’

The justification of the Willowbrook study ‘Our proposal to expose a small number of newly admitted children (750-800 in total) to the Willowbrook strains of hepatitis virus was justified for the following reasons: 1) they were bound to be exposed to the same strains under the natural conditions existing in the institution 2) They would be admitted to a special, well-equipped, and well staffed unit where they would be isolated from exposure to other infectious diseases which were prevalent in the institution –namely, shigellosis, parasitic infections, and respiratory infections– thus, their exposure in the hepatitis unit would be associated with less risk than the type of institutional exposure where multiple infections could occur. 3) They were likely to have subclinical infection followed by immunity to particular hepatitis virus 4) Only children with parents who gave informed consent would be included.’ (Krugman, 1971)

Some criticisms of the ethics of the Willowbrook study Did the study offer some therapeutic benefit to the subjects, or only to others? Some have argued that there was no benefit to the children. The aim of the study was to determine the period of infectivity of hepatitis. It produced positive results. But it can be argued that an experiment is not justified by its results but is ‘ethical or not at its inception.’ Immunization was not the purpose, but merely a by-product, incidentally beneficial. There were alternative ways to control hepatitis. ‘The paediatricians duty is to improve the situation, not to take advantage of it for experimental purposes.’ Informed consent and the parents: questions around coercion and information

Some foundational assumptions in bioethics/schools of thought The foundation of respect for autonomy Utilitarian welfare maximisation Social justice The four principles Casuistry Virtue ethics Narrative ethics Feminist ethics Geocultural bioethics

What are the major areas of study in the new medical ethics? Issues stemming from health care relationships Issues of life and death The patient’s interests vs. the interests of others Issues of distributive justice Conceptual analysis Ethical issues in the practice of medical science – the impetus of Nuremburg Bioethics, Science, Technology and Society Environmental Ethics Medical Education, Medical Humanities

William Carlos Williams: ‘The Use of Force’ How does the story read: traditional or modern? Connotations of the title? Official procedure: Continuum of force Could it be written now? Blind to paternalism? Is there anything objectionable in the actions portrayed in this short story? What might have been done differently? Does the speaker reveal a sense of self-awareness? Is there ethical reasoning involved? Narrative ethics: what kind of effort or understanding? Is there a philosophy, a principled approach, evident here? The account is very candid. Is this part of an effort to be provocative? Does this create ethical ambiguity? What do you think motivates this character to be a doctor?

Political and Media interest: recent headlines? Saturday and Thursday’s papers ‘Psychiatric Patient Takes Case Against involuntary detention in hospital’ ‘Legal Basis urged for end of life treatment’ ‘Combative Exchanges over medical cards means testing’ (The Irish Times, Thursday, October 16th, 2008) The role of religion Must every doctor be a bioethicist?

Aims of the ethics course To provide students with training in the knowledge, skills and attitudes relevant to the development of ethical competence for medical practice, with particular emphasis on the role of patient-centred care. To promote the tools of ethical engagement, including ethical reasoning, information gathering, communication and debate, critical thought, compassionate response, and reflection. To ensure that students know the main professional obligations of doctors as endorsed by the institutions which regulate and influence medical practice. To equip students with a knowledge and understanding of the legal process and the legal obligations of medical practitioners, sufficient to enable them to practice medicine effectively and with minimal risk. To enable students to enjoy the intellectual satisfaction of debates within medical ethics and law, while appreciating that ethical and legal reasoning and critical reflection are integral aspects of their clinical decision-making and practice. To promote an appreciation of the convergence between medicine and the humanities, with particular emphasis on the contributions of philosophy, literature and film, to medical education.